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Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”

 

The Best of 2018

As 2019 begins, we would like to take a moment to highlight a few of our most popular posts from 2018 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2018 one for the books, such as Marie Ennis-O’Connor, Casey Quinlan, and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated!

January

5 Ways to Have a Productive Day With a Chronic Illness

This post is designed to stop you in your tracks, and provide you with practical ways to have a productive day with a chronic illness.

Patient Advocacy: Understanding Your Illness

Marie Ennis-O’Connor teaches you which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.


February

The 7 Habits of Highly Effective Patient Advocates

This blog from Marie Ennis-O’Connor will help you to get motivated to reach your patient advocacy goals.

Negotiating Cancer: Tips From One Who’s Done It

Stefanie Joho shares what she has learned from her cancer journey and how it made her become a patient advocate.


March

Grief, Loss, and The Cancer Experience

Marie Ennis-O’Connor shares her top ten ways to cope with cancer grief.

What’s a Patient Scientist?

At the  Patients as Partners conference in early 2018, the term Patient Scientist was introduced and Jack Aiello shares what that means for him.


April

Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Marie Ennis O’Connor explains how to find, create, and use health-related hashtags to boost your patient advocacy.

MPN Patient Story: Ruth Gerwin

Ruth Gerwin shares her story and how MPNs have affected her.


May

What Does It Mean To Be An Empowered Patient?

Marie Ennis-O’Connor explores what it means to be an empowered patient today.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Carrie Ostrea shares her daughter’s story and what lead her to start the Little Miss Hannah Foundation.


June

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience to raise awareness and influence people to create a desired change. Marie Ennis-O’Connor shows you the steps you should take to create a compelling message to get your key issues across.

Patient Profile: Peter Blaze Corcoran

Prostate cancer survivor Peter Blaze Corcoran shares his story and what his disease has taught him.


July

Sleep Deprivation Caused By Cancer

The average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being, but that can be a challenge for cancer patients. Here are some tips to improve your sleep.

Coping with Scanxiety: Practical Tips From Cancer Patients

Cancer patients often experience anxiety about upcoming scans. This blog shares some practical tips for how you or a loved one can cope with it.


August

My Breast Cancer Story

Dr. Janet Maker shares her breast cancer experience and how she had to become an empowered patient.

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Having your own blog is a powerful way to boost your online advocacy, but how can you get more readers? Marie Ennis-O’Connor shares her 15 tips.


September

A Patient Engagement Manifesto – 6 Principles of Partnership

Marie Ennis-O’Connor discusses the need to find ways to engage patients meaningfully in healthcare design and then shares 6 guiding principles you can turn to when you are next called upon to take on a patient advisory role.

Reinventing the Clinical Trial: Start at the Ground Level

“We’re still stuck on the slow train when it comes to really reinventing the clinical trial.” In this blog, Casey Quinlan questions how we might challenge that stasis.


October

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

Breast Cancer Awareness Month is famously associated with pink everything – ribbons, clothing, yogurt, you name it! In her latest blog, Marie Ennis-O’Connor goes beyond pink and shares lessons learned from fellow breast cancer patients.

Patient Profiles: Breast Cancer Part I

This is the first blog in a three-part series that took a closer look at five breast cancer survivor stories and one caregiver in honor of October being Breast Cancer Awareness Month.


November

Returning to Work After Cancer Treatment Part I – Preparing the Ground

Returning to work after cancer diagnosis can be difficult and often brings mixed emotions. Marie Ennis-O’Connor shares practical solutions for helping with your re-entry into the workplace.

Nancy’s Lung Cancer Journey

In honor of November being Lung Cancer Awareness Month, our board member, Nancy, shared her lung cancer story.


December

5 Ways to Detect Cancer Before It’s Malignant

Like in most diseases early detection plays an important part in the prevention and intervention of diseases, so this blog show you 5 ways to help detect cancer.

Returning To Work During or After Cancer Treatment: Part 2

In this second part of a three-part series, Marie Ennis-O’Connor discusses common concerns on returning to work after a cancer diagnosis.

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

It’s October and the pink frenzy is in full force.  Breast Cancer Awareness Month (BCAM) is impossible to miss given the pink ribbon avalanche that arrives each Fall.  While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is  nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.”  Interestingly, some studies have even found that pink branding may actually lead the public to take breast cancer less seriously.

“The biggest issue I have with Breast Cancer Awareness month is that it’s not even really awareness,” writes Elizabeth McKenzie, who was diagnosed with breast cancer in 2012. “Awareness is mindfulness of all aspects of breast cancer, which to a certain respect, is different for all of us, based on medical differences in disease processes, treatment access, and personal, social-emotional and cognitive processes.”

Much of the criticism centers on breast cancer campaigns which over-sexualise the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialisation and sexualisation of the disease by the pink charities reinforces public awareness that breast cancer is gender specific. Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis. So, how about adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity?”

Over a decade ago on an October morning, I was diagnosed with breast cancer; a double reminder each year of the role this disease has played in my own life.   Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on this other side of cancer I see a broader picture, a richer landscape of many shades beyond pink. This post is intended to provide a truer picture of the lives of breast cancer patients in its many varied hues.  Wherever you are in your experience, whether you are caring for a loved one, recently diagnosed, finished treatment, or living with a recurrence or metastatic cancer, I hope this post will speak to you.

Lessons We’ve Learned From Each Other

Some of the most valuable lessons I’ve learned about breast cancer have come, not from my doctors, but from fellow patients. My doctors didn’t tell me about the effect of chemotherapy on my future fertility. I didn’t learn that treatment could damage my heart. And I finished treatment with no clue about late treatment side-effects or the risk of a cancer recurrence.

While valuing her oncologist’s expertise, Catherine Foy, who blogs at My Triple Negative Life, acknowledges that “within the online breast cancer community there will be someone awake somewhere in the world that can provide support and advice. For example, based on someone I followed I got my Vitamin D level checked which was very low and I am now on supplements. Other examples include creating awareness of late treatment side effects and reducing the feelings of isolation that some may experience.”

Liz O’Riordan, a breast surgeon diagnosed with recurrent breast cancer, and co-author of The Complete Guide to Breast Cancer, also refers to the feelings of isolation she experienced during her treatment. “I felt incredibly alone during my breast cancer treatment. I didn’t meet another patient at any of my chemo or radiotherapy sessions. All my advice was from amazing people on Twitter,” she says.  Liz offers this advice to patients undergoing chemotherapy:  “The two best tips I was given to reduce the side effects of chemo were: (1) Drink. Lots. Even when it taste disgusting. Ideally 3 litres a day. Try flavoured water or cordial. Carry a bottle everywhere you go. (2) Exercise. Walk for 30 minutes every day. You’ll hate me for making you. Some days you may have to stop and spit and pant and retch. But do it. You will feel better for it. And they were right. I did feel better.”

Barbara Jacoby of Let Life Happen agrees that we can learn valuable coping lessons from each other. “Whether it is a question of side effects that one is experiencing from a prescribed medication, or questions regarding treatment options or experiences or procedures, if you query a patient support or advocacy group, you are likely to find more answers and information from those who have had actual personal experiences with these issues. There is no doctor or group of medical professionals that has all of the information about real patient experiences and outcomes like any group of actual patients who have dealt with just about anything and everything imaginable on every level,” she says.

Both Catherine and Barbara believe that the information you get online should be shared and discussed with your doctors as the basis of shared decision making (the conversation that happens between a patient and clinician to reach a healthcare choice together).  “I value my oncologist’s advice and experience,” says Catherine, “and would usually discuss with him any new developments that I may have encountered through the various platforms on social media.”

Terri Coutee, a two-time breast cancer survivor, and founder of DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy, also embraces the concept of shared decision making and wants others to experience it too.  “I have had chemotherapy, radiation, two lumpectomies, a double mastectomy and breast reconstruction using my own tissue,” she says. ”Each of these occurrences was fraught with difficult decisions and hours of research to optimize my own health care plan. I left offices of various health care providers with armfuls of brochures and information to sort through and organize.”

Terri encourages patients to download the Breast Advocate App, a new tool to aid the shared decision making process.  The app was developed by plastic surgeon Dr Minas Chrysopoulo, whose patient population is primarily those affected by breast cancer or at high risk of developing breast cancer. “Shared decision making is an extremely powerful approach to deciding our treatment plans. Simply put, it empowers us and helps us advocate for ourselves,” explains Terri.  “As patients, we owe it to ourselves to embrace everyday conversations with our health care teams,” she says. “The information on the Breast Advocate app is informative, intuitive, and specific to your individual diagnosis or situation. There are treatment options with evidence-based articles to discuss with your healthcare team. It even features a community section. I encourage you to check out the wealth of shared decision-making information and download the Breast Advocate app to your phone.”

Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening, was completely unaware of the issue until she was diagnosed with breast cancer. “40% of women have Dense Breasts,” she explains. “A Mammogram is the only way to determine and measure Breast Density.  In Dense Breasts the reliability of screening mammograms can be reduced by as much as 50%.”   When you have a Mammogram, the radiologist reading it can tell if you have Dense Breasts.  Siobhan recommends you should ask for a copy of your radiology Mammogram report and ask if your breasts are dense. “If you have Dense Breasts you need to know and you should ask your Doctor/Radiologist about more personalised screening such as Breast Ultrasound or MRI,” she advises.

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC; also called stage 4, secondary, or advanced breast cancer) from online blogs and social media networks was revelatory for me. MBC is breast cancer that has spread beyond the breast — to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, it’s still referred to as breast cancer. Like Beth Gainer, who says, she learned “that anyone who’s been diagnosed with breast cancer is at risk,” I too have found, in Beth’s words, “what the metastatic breast cancer community has had to say has been a real eye-opener.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. As Catherine points out, “For me, breast cancer awareness month is for those who are not yet diagnosed or those newly diagnosed. The pink scene looks to future research and provides good information for those starting or in the midst of treatment. There is less focus on those of us living or dying with breast cancer.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

Joanne Taylor, a metastatic breast cancer patient and advocate, is pushing for more information and awareness of MBC.  She created this infographic to show the red flag symptoms of advanced breast cancer.

While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist.    “A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined,” says Joanne. “Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.”

One of the biggest misconceptions is that MBC is an instant death sentence. “We thought with BCAM coming up we would do something different to show how people could live well with MBC, so we started the #busylivingwithmets campaign,” explains Joanne. “Elizabeth had the idea, it was positive, it showed what people can do if they have access to drugs and surgery. I was her inspiration! If I can do it, others can as well – if they are given the right options.”

Lessons of Resilience, Connection, and Hope

Cancer can be a lonely and isolating experience, but it doesn’t have to be. “A friend told me to accept whatever help was offered, says breast cancer survivor Connie Rosser Riddle. “It was her way of saying to quit being Superwoman, that it was okay to be in need, vulnerable. It was best to be specific when folks asked, “What can I do for you?” My answer combined what that person was best at and where I needed help, and that made a good fit for both of us.”

Audrey Birt, diagnosed with breast cancer three times, shares lessons of courage, connection and resilience on her blog.  “Cancer taught me I’m more resilient than I would have believed, it helped make me braver,” she says. “It also taught me that life cannot be controlled. This made me more able to live in the moment, and for the moment.  That’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time.”

Ultimately however, the lessons you learn will be unique to you. “There is not a single person, story, book, lecture or talk, which will teach us all we need to know to understand the impact of cancer on our lives. That’s what we have to figure out for ourselves when we go through our own cancer experience,” says therapist, Karin Sieger . “Having been diagnosed twice with breast cancer all I can say is try and stay open minded – to your body, the illness, treatment options. You always have choices. Don’t get stuck in fear and don’t get stuck in complacency either. Live your life to the best of your ability and stay true to who you are – with or without cancer.”

A Patient Engagement Manifesto– 6 Principles of Partnership

Recently I presented at a conference on the topic of patient engagement. I spoke to the audience, mainly comprised of digital technology start-ups, about the need to find ways to engage patients meaningfully in healthcare design.  Too many developers think they understand what patients need, but in reality, many appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes.  A 2015 study from the New York University School of Medicine Department of Population Health reported that only 29% of smartphone owners using health apps say the apps have made a big impact on their health.

In thinking about this month’s blog topic, it occurred to me that it might be useful to have some guiding principles you can turn to when you are next called upon to take on a patient advisory role. Whether it’s a clinical trial, a new app, or improving hospital safety standards, patients and caregivers are increasingly becoming engaged in the design process.  However, not every organization understands how to engage patients in a purposeful way. Frequently patient participation never moves beyond a tokenistic consultation or a tick box exercise. So it’s up to us as patients and caregivers to lead the way and show the healthcare industry what meaningful engagement really looks like.

In my talk, I presented a roadmap to guide developers towards a worthwhile way to engage patients. A roadmap can be equally relevant to you as a patient advocate to guide your participation in the co-design process. Each of the following six principles reflect the value of patients as experts with rich insights and experience. Never underestimate the expertise you bring to healthcare and don’t allow others to minimize your contribution. Lived experience is equal to other forms of knowledge, evidence, and expertise.  Clinicians may be experts in disease, developers in technology, but you are the expert in your own life. You know better than anyone what it takes to live with your condition every day and which challenges you face in managing your illness. Ultimately, it is your insights that will help build a better healthcare system or solution.

6 Principles of Patient Engagement – From the Patient Perspective

1. Engage Us in Ways That Are Personally Meaningful

In an article entitled, Who Gives Us the Right to “Empower” Patients? , the authors point out that the health care system “continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.”

You cannot design health care solutions or services without taking into account patient values and preferences and the context in which we live our lives. Healthcare is complex; it’s connected to a lot of things which have nothing to do with technology. A failure to recognise the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted health initiatives.

2. Engage Us Where We Are – Not Where You Wish We Were

The most successful health applications are those that understand the real-life problems that come with living with a condition and creates solutions that meet real life needs. If an application does not solve a problem for the patient, it will not be adopted. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”

Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly? ’  If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

3. Engage Us Early in the Design Process

A report by Accenture revealed that just two percent of patients at hospitals are using proprietary health apps provided for them. This staggeringly low figure represents an alarming waste of resources. Accenture concluded that hospital apps are failing to engage patients by not aligning their functionality with what patients actually need. For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. If those hospital app developers had worked with patients from the earliest design stages, they would be much more likely to produce an end product that patients would actually want to use.  “Co-design,” in the words of Renza Scibilia in her recent post Co-designing Co-design, does not mean showing a finished product to someone and asking for ‘feedback.’” It’s about involving patients right from the start of the design process.

Similarly, when it comes to research, it’s important that patients frame the research question. Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.

4. Engage Us in Progress Reports

Genuine engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as contributors who have a sense of ownership in outcomes. However, I’ve lost count of the number of times I’ve been involved as a patient advisor on a research proposal or steering committee and received no updates on its progress.  In her brilliant post, Patient Engagement: You’re Doing it Wrong, Isabel Jordan captures the feeling of being used which many of us feel in this situation. “I traded my family’s story for what, exactly?” she asks, “I don’t know, because I was never informed. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.”

Sue Robbins, another vocal advocate of meaningful engagement agrees, and asks the question “how is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone?”

5. Engage Us as Equal Partners

I also believe that valuing patients as equal partners extends to paying them for their time and expertise. Not everyone agrees with this position. But if those round the table are being paid, why not the patient who is also sharing their time and expertise? As Annette McKinnon, a founding member of the Patient Advisors Network (PAN), puts it, “patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts?”

Tessa Richards, writing in the BMJ, puts forward arguments both for and against payment. Whether or not to pay a patient is contextual, however, she is clear that “in a consultation where other experts are being paid for their time, patients and patient advocates should be too, and this should be standardized. My time and experience are as valuable as any other person at the table who is getting paid for being there. It amazes me how often patients are just expected to be thankful to be invited.” To quote melanoma patient advocate, Kay Curtin, “This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.”

(Note: The Change Foundation in Canada has developed a useful decision tool to guide organizations on whether to pay “patient engagement participants.”)

6. Engage Us Beyond Our Stories

Jordan is unequivocal when she says, “stop engaging patients if you’re not actually ready to partner with them.  Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.”

Engaging with us starts with our stories, but it shouldn’t end with our stories. We are so much more than just “the patient story.” Dig beneath the story and you will find that a patient isn’t a disease with a body attached, but a life into which a disease has intruded. Our stories are not pawns to be used and then discarded.  Respect and value them for being, in the words of David Gilbert, Patient Director @SussexMSK, precious ‘jewels from the caves of suffering.’

(Note: PAN provides some excellent tips on its website, for patients and caregivers who are asked to share their story or experiences. It includes the advice to decline to share your story if you are not emotionally ready to do so.)

Final Thoughts:  Be Prepared To Say No

In a thought-provoking and wonderfully—articulated post on the nature of meaningful patient involvement in pediatric neurodisability research, Jennifer Johannesen suggests that “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”  I am in full agreement with Johannesen and find myself increasingly turning down requests to participate in projects these days on this basis.

I firmly believe that a shift away from the rhetoric of patient engagement towards a genuine model of partnership, needs to come from the ground-up. We as patients have to be, in Johannesen’s words the “conscience, and the critical voice.” We need to challenge patient tokenism and push for real outcomes. We need to spur organizations to design solutions that not only work technically, but make a real difference in the lives of patients.   Only then can we hope to see the true meaning of patient engagement become a reality. To steal a line from David Gilbert, “nobody is going to take us seriously if we don’t.”

 

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Have you ever had the sinking feeling of pouring your heart and soul into writing something you felt sure people will want to read, only to find this isn’t the case? That, apart from your Mom and your best friend, it feels like no one else is reading your blog?

Having your own blog is a powerful way to boost your online advocacy. Blogging shows your commitment and passion for your cause. It’s also an extremely effective way to build a community and engage more people in your cause. However, it can be disheartening to find yourself with so few readers.

If you want more than a handful of people to discover your valuable content, then this post is for you. I’m going to show you how to find more readers for your blog and promote it to a wider audience. The following tips come from my own experience as a blogger over the past nine years, along with tips from some of the smartest patient bloggers I know. I feel sure you’ll find their advice helpful as you focus on growing your own blog and building your readership.

Let’s get started right away with our first tip.

1. Optimize Your Blog’s UX

Let’s begin with how your blog looks. What is the user experience (UX) like for your readers? How easy is it to navigate around your blog? Susan Rahn gave her blog, StickIt2Stage4, a complete overhaul this year. “I updated the template to something that was more aesthetically pleasing and easier to navigate,” she told me when I asked her for her best tips on creating a better blog.

You should check also to see how easy your blog is to read on mobile devices. Does your site load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds (check your blog’s loading time with a tool like Load Impact).

2. Provide Helpful Information for Readers

While your blog may contain personal stories about your experience and that of others, it’s also a good idea to provide helpful resources for your readers. “Having pages that have helpful information such as organizations that offer conferences, support or help in some way – either financial or trips is very useful”, says Susan, “especially if you can personally recommend them.” Susan also suggests including a list of other bloggers that you read and can recommend to readers.

3. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

4. Hook Your Readers with a Great Headline

When it comes to writing your posts, spend some time creating a great headline. Your headline is the first (perhaps only) impression you make on a prospective reader. A good headline frames your content. No matter how amazing your content is, few people are going to click through to read it if they’re not immediately captivated by your headline. The kind of headlines which perform best include:

  • “How To” – e.g. “How to Prepare for Surgery”
  • List-Style – e.g. “5 Tips for Dealing with Chemotherapy”
  • Questions – e.g. “What is Chemo-Brain?”

Try adding “power” words and phrases to your headline, (such as best, tips, empowering, challenging) to create more engagement. Download a list of 90 headline power words here.

5. Keep Readers’ Attention with Your Introduction

When you have hooked readers with an irresistible headline, you want to keep them reading. Start by asking a question, or share a striking quote, a startling statistic or a personal story. Don’t make the intro over-long or your readers will quickly lose interest. Aim for around the 100-word mark. Make every word count. Establish your rhythm and pace with those first words – you can slow the rhythm down in the body of your post later if you wish.

6. Add Visual Appeal

We live in a visual world. If content is king, then visual content is queen. And when it comes to creating visual content, don’t be tempted to reach for the nearest stock photo. These days there’s no excuse for using boring stock images. In this post I share some of my favorite places to source images for free to enhance your social media posts. A good tip is to create your own graphics with the title of your blog and/or your name and include it each time you share a link to your blog on social media. People will soon start to recognize your own unique “brand.”

7. Maintain a Consistent Posting Schedule

To create and maintain interest you need to post consistently to be able to stay in front of your audience’s eyes. Dee Sparacio, who blogs at Women of Teal, says it’s important to maintain “a pretty regular schedule so your followers are not visiting your page and seeing an old post.” Barbara Jacoby, of Let Life Happen, told me that the only thing that she has ever done to promote her blog was “to consistently write and post a weekly blog and research and post a daily ‘In the News’ article.”

Nancy Stordahl, the creator of Nancy’s Point, also advocates for consistency. “Try to post consistently if you want to develop a loyal readership,” she says. “This takes commitment (work), which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

One of the best ways to keep a consistent schedule is to create recurring content on your blog. Readers will then come to expect and look forward to this content each week. Examples could be creating a weekly round-up post as I do on Journeying Beyond Breast Cancer, or a Monday Motivation post.

8. Leverage Guest Blogging

Whether you invite a guest blogger to blog on your site, or you guest blog for someone else, guest blogging is one of the most effective ways to increase your blog’s traffic. Not only do you get the opportunity to build your authority and increase your visibility, you can also leverage the social following of your guest blogger when you mention them on social media. Beth Gainer, who blogs at Calling The Shots, endorses this strategy. “Offer to guest post for others’ websites,” she recommends. “I have published several guest posts, and my posts have been shared. It’s a great way of having others notice your blog.”

9. Respond to Comments

Have you ever taken the time to leave a comment on a blog and had no response? It’s disappointing and may well discourage you from commenting again. An active comments section is a sign to others that your blog is a community that cares and wants to help each other. Susan Rahn believes that this kind of interaction is important. “It lets readers know you are paying attention and you care that they are reading,” she says.

Take time to comment also on others’ blogs. “By leaving a meaningful comment on a post, you not only build community with others,” says Beth Gainer, “but others can link to and get to know your blog. I try to leave thoughtful comments on others’ blogs because I am a part of a larger community of writers, and it helps to reach out. As an indirect result of my posting comments, bloggers have visited my site and left comments.”

10. Share Your Content on Social Media

Whether it’s a Twitter, Facebook, Snapchat, or an Instagram account, being active on social media is the best way to share your content with a wider audience. Dee Sparacio first set up a Twitter account with the name of her blog, @womenofteal to share her content. Then she started a Facebook page, again using her blog name. Dee advises setting up a specific page for your blog (and not just sharing via your personal Facebook account). “By having this blog page, I have people who follow me for my advocacy work follow that page and not my personal page.”

Susan Rahn also recommends connecting your blog to all your social media accounts. She has added a blog link to her Instagram bio too. “So all I need to do is create an Instagram post and direct followers to the link in my bio.”

11. Re-Share Older Blog Content

According to Susan, “re-sharing a blog post from time to time that is relevant to current events or conversations has been helpful” in growing her blog. “New followers may not have gone back through archives to read past posts so it’s new content for them,” she points out. This is a super tip. I’d add to this by saying that it’s a good idea to go back to the original post and see if it needs updating in light of current news or developments. Do you need to update a statistic or fact? Is there new research you can add to the post? Or a quote or comment to make it even stronger second time round?

12. Make It Easy To Share Your Content from Your Blog

When more people share your content, you increase the chance of driving more visitors to your blog. Make sure your social sharing buttons are clearly visible. By making it easy for visitors to your site to share your content, you increase the likelihood that they will take this action. To generate even more shares, install Click to Tweet, a handy tool which generates one-click tweet boxes or links that can be shared throughout your blog or via email.

13. Grow Your Online Followers

“Seek and ye shall find,” recommends Terri Coutee, founder DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy.   “I hold fast to this mantra even after blogging for over 3 years,” she says. “Just as with any business, bloggers must find who is interested in their content. Look for social media communities talking about what your blog content focuses on and cast a wide net. Don’t rely on just a few hashtags and groups. Visit those hashtags, those groups and see who they are connected to. Friend, like, re-tweet, and follow these people. Share your content across more than your own “wheelhouse” because when you least expect it, someone in one of those groups may need what you’re blogging about.”

The more people who follow you on social media, the more you can amplify your content and increase your social shares. Dee Sparacio recommends @mentioning (tagging) a person or an institution whenever you reference their research on your blog. This not only brings their attention to your blog, but it’s also a way to grow your followers. The key here is to find followers who share your interest and will be most likely to share your content. A great way to find like-minded followers is to join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc. If you’re new to Twitter chats, you can learn more about how to take part here.

14. Use Relevant Hashtags

Hashtags are a powerful way to maintain your visibility on Twitter and Instagram and boost engagement with your followers.  According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Hashtags can also expand the reach of your message beyond just those who follow you to help you grow your network. Be sure to include the relevant hashtags when you share a link to your blog on social media. For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

15. Send an e-Newsletter to Subscribers

Newsletters can help keep your blog top of mind with readers. Use it to send an email digest of your most recent blog posts or notify your subscribers when you publish a new post. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends Nancy Stordahl. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control. In my emails, I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers. Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Both Susan and Nancy use MailChimp as their email list provider. “I added a MailChimp widget that would popup to invite readers to subscribe (even though they are very annoying),” explains Susan. “Through that widget, I was able to set up an email blast at a predetermined time after a new blog was posted.”

Some bloggers are reluctant to set up a mailing list because they think it’s going to be a lot of hard work. Nancy has this advice to share: “Mailchimp is an easy setup and it’s free up to 2,000 subscribers. And don’t worry about how many subscribers you have. It takes a while to build a list of readers that truly want to read your posts. The ones that stick around are gems. It’s worth the extra work, for sure.”
If you’re interested in setting up your own email list, read How to Build Your Email List The Right Way to learn more.

Be Real, Be Authentic, Be You!

A final piece of advice is to be yourself and write from the heart. In Susan’s words, “Just be authentic. Be true to who you are. Let readers get to know you through your blog as if they are sitting down having coffee and conversation with you.”

Catherine Foy, who blogs at My Triple Negative Life, echoes Susan’s advice. “Be yourself when writing (as if you are talking/giving advice to a friend),” she says. “Don’t concentrate on follower numbers. Engage with like-minded people through social media or chats, follow people or organizations that you admire. Always be true to yourself and treat everyone online with respect.”

While it may be gratifying to have lots of blog readers, those numbers aren’t really what count. “We write for a reason and purpose,” Terri Coutee reminds us, “Telling your story should ultimately have the end goal of making a difference in someone’s life.” Even if you have only a handful of readers, you still have an incredible power. You have the ability to connect directly with every one of those readers and impact their lives. Perhaps it’s one piece of information which you share that’s the missing puzzle piece that someone needs right at that very moment of reading it.

If telling your personal story is the lifeline that even one reader needs to be able to hold on to hope, then your blog will be a precious gift to the patient community. As writer, Connie Rosser Riddle told me, the thing that sustains her blogging is writing from her passion. “Throughout life, I’ve been fascinated by stories, whether they were ones I read in books, or those of real life unfolding,” she explains. “Sometimes my blog posts concern my experience having triple-negative breast cancer. Those stories come from cancer intersecting with daily life, finding meaning in the moments of coping with reality and discovering beauty along the path.”

If you’d like to learn more about setting up your own blog from scratch, check out this guide.

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.


2020 Update: Patient Empowerment Revisited: What Does It Truly Mean To Patients?

 

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Grief, Loss, and the Cancer Experience

“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.

The 7 Habits of Highly Effective Patient Advocates

“Without doubt, you have to leave the comfort zone of base camp and confront an entirely new and unknown wilderness.” -Stephen Covey

Stephen Covey’s best-selling book, The 7 Habits of Highly Effective People was first published in 1989 as a business and self-help book. Covey presents an approach to being effective in attaining goals by aligning ourselves to what he calls “true north” principles. I was inspired reading this article by Melissa McAllister, to go back and read the principles behind the book to see how we might apply them to our advocacy work.

HABIT 1: Be Proactive

The first habit that Covey discusses is being proactive. I cannot think of a more apt description of patient advocacy – in order to be effective, we must be relentlessly proactive. Carolyn Thomas, a heart attack survivor, and author of A Woman’s Guide To Living With Heart Disease, tells the story of how her cardiac symptoms were dismissed when she was first admitted to the ER. She wonders had it been her daughter or sister experiencing the same symptoms, what would she have done? The answer: “screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.”

HABIT 2: Begin with the End in Mind

Habit 2 suggests that, in everything we do, we should begin with the end in mind. We should envision the end result clearly and work with purpose toward achieving our vision of optimum care for ourselves and others.  One of the best ways to incorporate Habit 2 into your life, according to Covey, is to develop a Personal Mission Statement. Consider creating a Mission Statement to put your advocacy goals in focus and make your vision a reality.

HABIT 3: Put First Things First

In order to be effective, we must learn to prioritize our day-to-day actions based on what is most important, not what is most urgent. This means learning how to say no in order to focus on our priorities. As Covey puts it, “The key is not to prioritize what’s on your schedule, but to schedule your priorities.”  Dee Sparacio, author, blogger and ovarian cancer advocate, recently wrote on her blog about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

These questions can be helpful for us to look at our own activities and decide which advocacy roles we want to put on the top of our priority list.

HABIT 4: Think Win-Win

In our advocacy work, we will inevitably find ourselves in a situation where our wants and needs conflict with another’s. In order to practice this habit, we must commit to creating Win-Win situations that are mutually beneficial to each party. While recognizing this might not always be possible, this habit reminds us that we must at least try to understand the other person’s point of view and work if possible towards a mutually satisfying outcome.

HABIT 5: Seek First to Understand, Then to Be Understood

Communication is one of the most important skills we can develop. While many advocates can speak well, how many of us are good listeners? Listening and hearing are not the same things. Most people listen with the intent to reply, not to understand. Poor listeners are unable to separate their own needs and interests from those of others. They are more likely to interrupt and to jump to conclusions about what the other person is saying. Active listening requires critical thinking skills and emotional intelligence.  Developing the ability to listen deeply allows us to respond with an open minded empathy to another’s situation. We are less inclined then to interpret the other person’s words solely from our own perspective and frame of reference.

HABIT 6: Synergize

Synergize is the habit of creative cooperation. Covey describes this habit as one in which the whole is great than the sum of its parts: “It’s a process, and through that process, people bring all their personal experience and expertise to the table. Together, they can produce far better results that they could individually.”  From our own advocacy work, we know this to be true. We are stronger together. When we bring our collective voices, skills, and experience together, we achieve more. Covey points out that valuing differences is what really drives synergy: “When people begin to interact together genuinely, and they’re open to each other’s influence, they begin to gain new insight. The capability of inventing new approaches is increased exponentially because of differences.”

HABIT 7: Sharpen the Saw

Habit 7 is focused around taking time to renew our resources and health to create a sustainable long-term environment for our advocacy work. “Sharpen the Saw”, writes Covey, “means preserving and enhancing the greatest asset you have—you.”  In our desire to effect change quickly we can easily burn-out. Renewing ourselves physically, spiritually, emotionally and mentally will help us practice each of these seven habits more effectively. 

Some Final Thoughts on Being an Effective Patient Advocate

 I asked some of my favorite patient advocates to share their thoughts on what makes an effective advocate. Here’s what they told me.

“Passion, persistence, patience. Self-leadership, clear vision, courage (at least sometimes!) ‘We’ attitude, optimism, hope, trust, belief in basic goodness. Ability to listen, collaborate, cajole, criticise (constructively), take criticism.” – Anne Lawlor, Founder, 22Q11 Ireland

“Knowing when you need to talk about your personal view or experience and when you need to garner input from other patients. Nobody’s voice speaks for everyone.” – Alison Fielding, Chair Cardiomyopathy UK

“Passion, tenacity and balance. If you don’t have a passion for what you do, you tend not to give your all. Tenacity for it is inevitable that someone will tell you no or close the door in your face. When that happens you must remember your passion. Balance because you need a life.” – Anne Marie, lung cancer patient and blogger at These Are My Scars

“Perseverance, stand your ground, listen, don’t be afraid (to ask questions or admit you don’t know something) – remind others you want the same.  Understand your goals, what are you trying to achieve and why.” – Julia, co-founder #BCCWW

“Passion, commitment, belief in what you are doing, being a voice for not just you but many, speaking out, assertive, having your opinion doesn’t matter if it’s unique, a great communicator and networker, good listener, resilience and determination.”  – Jo Taylor, Founder, After Breast Cancer Diagnosis

As you can see so many of these responses echo the 7 habits above.  Patient advocacy requires self-belief and a clear vision for what you want to achieve. Above all, it requires dedication, persistence and commitment. I am so proud to be able to work among such passionate patient advocates. The work is hard and often goes unnoticed, but your reach and impact is immeasurable.

Patient Advocacy: Understanding Your Illness

The news that you, or a loved one, has a serious illness can be a terrible blow.  You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

1. Obtaining Information From Your Doctors And Healthcare Team

Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions.  How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage.  Others say they didn’t receive enough information.  While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.

Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.

Some questions to ask your doctor about your diagnosis:

  • What are the symptoms of this illness?
  • What should you do if you notice new symptoms or if existing symptoms worsen?
  • Do you need any further diagnostic tests?
  • What are your treatment options?
  • What are the side-effects of the recommended treatment?
  • What are the benefits vs the risks?
  • What happens if you do nothing?
  • Are there other treatment options available?

Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.

2. Finding Reliable Information Online

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.

Here are some questions to help you determine the trustworthiness of online sources of information.

  • Who has produced the information?
  • Does the organization have commercial interests or another reason they are promoting this information?
  • Is the name of the organization and their aims in setting up the website clearly shown?
  • Does the site provide contact details if you have any questions?
  • Is the information on the website up to date?
  • Does it cite the source of the information that is being presented?
  • Does the site link with other reputable sites that give similar information?

3. Evaluating Medical News Reports

Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease.  As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.

The following questions will help you evaluate the reliability of medical news reporting.

  • Does the article support its claims with scientific research?
  • What is the original source of the article?
  • Who paid for and conducted the study?
  • How many people did the research study include?
  • Did the study include a control group?
  • What are the study’s limitations?
  • If it’s a clinical trial that is being reported on, what stage is the trial at?

Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.

4. Learning From Peers

From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses.  Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.

Final Thoughts

Understanding your illness is the first step on the path to advocating for yourself and others.

Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.

The Best of 2017

As 2018 begins, we would like to take a moment to highlight the top 10 most popular posts from 2017 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated.

How to Read and Understand A Scientific Paper

This guide will teach you how to read a scientific research paper so that you can come to an informed opinion on the latest research.

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. If you follow this step-by-step guide it will help you to help you become a more confident, prepared, and persuasive speaker.

How to Weigh Up the Benefits and Risks of Treatment…And Why It’s Important That You Do

This blog explores the question, “Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?”

Mapping the Patient Information Journey

Health information needs to change as you move along the patient pathway and research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making.

How to Cope With Cancer-Related Fatigue

Marie describes cancer-related fatigue (CRF) and six different ways for patients to manage it.

Patient Profile: Elizabeth Carswell

Elizabeth Carswell’s story of AML and how her child keeps her going is shared in this patient profile.

What Not to Say When You Don’t Know What to Say

Inspired by an Empowered #patientchat, Jennifer Lessinger put together a list of the most common comments patients hear and why you shouldn’t say them.

The Advocate’s Guide to Reporting Live from Conferences and Events

Marie shares her guidelines and tips for preparing to report live from your next conference or event.

The DisCONNECT OF CANCER

This blog discusses how a diagnosis and cancer can affect your relationships.

Patient Advocacy: Ten Tactics for Mastering Social Media Success

Here are ten tactics you can use to master social media, make your cause better known, and grow your online influence.

How To Boost Your Online Advocacy Through Blogging

Are you looking for a way to boost your advocacy activities online? One of the best ways to do this is to create a blog. Many patients blog about their illness as a way to advocate for better treatment and care and to provide guidance and support for other patients. Blogging shows your commitment and passion for your cause.  Because a blog is interactive (by allowing readers to post comments) it is also an extremely effective way to build a community and engage more people in your cause. If creating a blog is part of your plans for 2018, but you are not quite sure where to start, this step-by-step guide will get up and running in no time at all.

Step 1 Choose a Blogging Platform            

The first step is to choose your blogging software. Free blogging platforms are designed to be easy to use with pre-existing templates which you can personalize. Popular platforms include Blogger, Tumblr and WordPress. I use a WordPress site for my blog Journeying Beyond Breast Cancer.  The free version at WordPress.com is a good option if you want to try out blogging with little or no financial outlay. If however, you would like more functionality and the freedom to host your blog yourself, then you should choose WordPress.org.  I will focus on setting up a WordPress blog throughout this guide.

Step 2 Choose a Domain Name

Your domain name (also known as your URL) is your address on the web. Choose a domain name that is short, memorable and descriptive.  If you choose the free version of WordPress, your domain name will look something like this: yourname.wordpress.com. If you wish to omit ‘WordPress’ in the url, you have an option to pay an annual premium which costs around $18.

Step 3 Pick a Web Host

Web hosting is where your website lives on the internet. Every online site needs web hosting. If you choose WordPress.com your blog will automatically be hosted by WordPress.  If you decide to go with WordPress.org you will have to purchase hosting with a separate hosting company. There are many hosting companies to choose from, but the only hosting service officially recommended by WordPress is BlueHost.

Step 4 Install Your Blog

If you have chosen the free version of WordPress your blog will be installed automatically.  If you have purchased a hosting account, your provider will walk you through the steps needed to get your WordPress blog up and running.

Step 5 Configure Your Blog Settings

Now it’s time to set your blog’s title, tagline, language and visibility options.

Go to the General Settings of your WordPress dashboard.

The first setting you will see is Site Title. Your site title can be anything you’d like – it doesn’t have to be the same as your blog’s URL or your username.

Tagline is next and is a short description to describe what your blog is about. For example, the tagline of my blog is “Making Sense of The Breast Cancer Experience Together”.  Until you personalize your tagline the default is displayed as follows:

The Language option lets you select the language you wish to use on your blog.

Finally, the Privacy settings control your site’s visibility. Set this to Public if you want to be found by search engines.

Step 6 Design Your Blog

Designing your blog is the fun part and it starts with selecting a theme. WordPress has a wide range of paid and free themes for you to choose from. You can sort themes by filters like “popular”, “latest”, “featured” as well as several other filters. New themes are always being added so you can change your theme as often as you like. Clicking on a theme’s thumbnail will show you a preview of that theme so you can see how it will look before you activate it.

You can customize your chosen theme by adding your own header image if you wish, for example a picture of you or the logo of your organization.

Once you have selected your WordPress theme, you are now ready to create your first blog post.

Step 7 Creating Your First Blog Post

To write a blog post, click on the Posts » Add New menu in your WordPress dashboard. Enter your post title in the upper field and enter your post body content in the main post editing box below it.

Click on Add Media to include an image, document, audio or video file in your post.

Adding Categories and Tags to your posts will help you organize your blog posts. Categories are the general topic area you are writing about. Readers can browse specific categories to see all posts in the category. Tags refer to micro-categories for your blog. Posts with similar tags are linked together when a reader clicks one of the tags.  Here is a sample of some of the most commonly used tags on my blog.

The Preview button allows you to view your post before you publish it. You can save a draft of your post and come back later to edit or add more content to it. When you are happy with how your post is written, you can publish it either straight away, or you can schedule it for publication on a future time or date. You can also change the publish date to a date in the past to back-date posts.

How long should a blog post be?

There’s much debate on whether short or long blog posts work better. If you want your blog to rank on Google, then longer is better. This is because longer articles will contain more keywords, headings, links, and pictures. Aim for something between 1000 to 1500 words, but at the very least, your blog posts should be more than 300 words for Google to rank it. Just make sure that posts are easy to read by breaking up long text with headings, bullet points, short paragraphs and images.

A note on Posts vs Pages

Often WordPress beginners get confused between Posts and Pages. Posts are entries that display in reverse order on your blog. As you add more posts, older entries are moved further down and become less visible. Pages (such as About or Contact Me pages) are static and remain visible to readers.  To create a new page, go to Page -> Add New in your dashboard.

 Step 8 Attract Readers to Your Blog

Don’t get disheartened if visitors don’t flock to your blog right away. It takes time to build your readership, but there are a few things you can do to increase your blog’s visibility and attract more readers.

1. Post your content on social media

The best way to attract more readers is to post your blog content on social media. However don’t just post a link to your latest post – include images, pose a question, or add a startling statistic that will encourage readers to click on your link to find out more.

2. Make it easy to share your blog

To expand your blog’s reach on social media, encourage readers to share your posts after they have read them. Make it easy for them by adding highly visible social sharing buttons to all your posts.

3. Hook your readers with compelling headlines

Your headline is the first impression you make on a prospective reader. Just as we judge a book by its cover, we often judge a blog post by its title.  It’s fine to start writing your post with a working title, but when you have finished writing it, go back and spend some time creating a headline that will entice readers to click through and read the post. For tips on creating compelling headlines click here.

4. Use keywords in your blog posts

If you want to attract new readers to your blog, you want to make sure they’ll be able to find you when they search online.  It’s important therefore to include keywords in your content if you want to rank higher for particular search terms.

 5. Comment on other blogs

Most blogs have comment sections which allow you to comment with your blog’s url. Leaving a comment which adds to the conversation is a good way to interest others to click through to your blog.

6. Write a guest post for an established blog

 Offer to write a guest post for a blogger with an established readership. Include your blog’s url in your guest post.  Search engines like Google index blogs when they find them mentioned (in the form of links) on sites they have already ranked. The more high-quality links your blog has, the higher Google will rank you.

7. Maintain a consistent posting schedule

You need to post regularly to stay in front of your audience’s eyes and grow your readership.  Maintaining a regular publishing schedule means you should pace your posts so that there is something new to read on a consistent basis.

To wrap up, blogging is an extremely effective way to show people what you are passionate about and committed to. If you want to boost your online presence and grow your advocacy in 2018, starting a blog in the New Year is a great place to start.

Happy Blogging!

 Do you blog? Do you have any other tips to offer novice bloggers? Please share your tips and your blog’s url in the comments below.

A Woman’s Guide to Living with Heart Disease

It’s my great pleasure this month to interview Carolyn Thomas, journalist, blogger and heart health advocate. Her popular Heart Sisters blog was recently turned into a book, A Woman’s Guide to Living with Heart Disease. As a heart attack survivor Carolyn is on a mission to educate women about their heart health.

Hi Carolyn, can you tell us a little more about why and how you decided to create your blog Heart Sisters?

C.T. I launched Heart Sisters in 2009 as a static 3-page site for local individuals and groups wanting to book my presentations about women’s heart health. I had no clue that anybody outside of my hometown of Victoria here on the west coast of Canada would ever read it.  At the time, I’d recently graduated from the WomenHeart Science & Leadership Symposium for Women with Heart Disease at the prestigious Mayo Clinic, and I was very busy sharing what I’d learned during my Mayo training at these local presentations. I called these weekly talks my “Pinot & Prevention” events (booked at least three months in advance!) A reviewer at the time described my talks as “part cardiology boot camp, and part stand-up comedy!” I felt overwhelmed by the response, and I was also a heart patient living with ongoing cardiac issues! But there clearly seemed to be growing public interest in this topic! I started the blog using a free WordPress template mostly to share info about how to book one of my talks so I wouldn’t have to spend so much time on the phone! A few months in, it struck me that perhaps I should add some meaningful value-added content too, covering some of the more popular questions women were asking me during my heart presentations.  And here we are now, eight years and over 700 blog articles later, with over 12 million views from 190 countries!

That’s impressive! What do you think are some of the benefits for patients who blog?   

C.T. I suspect that many patients who start a blog do so for its therapeutic value. I’ve seen you describe it as “writing to heal”. We’re trying to somehow make sense out of a life-altering diagnosis that makes no sense. It’s also been said that when something terrible happens, the only good that can come of it is if you’re able to make things better for others because of it. And I love the remarkable sense of community that can emerge over time between my blog readers and me, and (even better!) between each other!  When I wrote in 2015 about the birth of my first grandbaby (our darling Everly Rose), I was moved to tears by comments coming in from so many women I’d never met, who were so happy sharing in my own joy.

Not everyone is comfortable with the term “survivor” to describe their experience. I’m curious to know what you think. Is there a “survivor mentality and/or personality”?

C.T.  Sometimes people who are introducing me at a conference or at an after-dinner presentation ask if I mind being referred to as a “survivor”. Considering the alternative, I don’t mind at all. I did survive. I survived being misdiagnosed in mid-heart attack and sent home from Emergency. I survived what doctors still call the “widow maker” heart attack (notice they don’t call it the “WIDOWER maker” when it happens to women like me!)  I survived what many do not.  But I didn’t survive it because I thought positive thoughts or had a better attitude than those who didn’t survive what I did.

We hear about the Survivor mentality (good) when it’s typically contrasted with the Victim mentality (bad). This makes some sense when we’re talking about human resilience, but honestly, there are few things less motivating or inspirational to me than listening to some chirpy survivor brag about doing triathlons or climbing mountains despite having survived ______ (insert horrific medical diagnosis/procedure here) while everybody applauds his/her spunk and winning attitude. Nobody supports wallowing in self-pitying victimhood, but the distressing implication when believing in a survivor mentality is that if only those poor unfortunates who died of the same horrific diagnosis had somehow tried more, been braver, worked harder, thought happier thoughts, etc., well, they might still be alive today. Heart disease last year killed about six times more women than breast cancer did – and those women who died (some of whom were my friends from our Mayo class of 2008) are no less brave than those, like me, who have been lucky enough to survive. So far.

Do you see any commonality in the experience of surviving a heart attack when you read cancer survivorship blogs?

C.T. I can’t speak for all survivorship blogs, of course, but I can say that the sense of not being the only one feeling this way can be a huge relief when we read somebody else describe what we’ve been going through, too –  especially for those I like to call the ‘freshly-diagnosed”.  One of my blog readers left a comment, for example, that simply asked: “Oh my God! Are you ME?”  Another important theme is that many patients facing a catastrophic diagnosis – no matter what that diagnosis might be – are suffering a sudden and profound loss of self, complete with an awful sense that my old self, who I was and how I identified myself in this life, has somehow crumbled away, but leaving nothing in its place to replace it yet –  that stark Before Diagnosis and After Diagnosis difference. I once described it as being like taking a trip to a foreign country we never, ever wanted to visit.

I agree with you – that sense of not feeling so alone in our illness is powerful. Do you think that the reach of our blogs can extend further, perhaps even influence the practice of healthcare?

C.T. I sure hope so!  For example, I’m a person who likes evidence, so both my Heart Sisters blog articles and my book contain detailed medical journal references to support research that I mention. I think it’s one of the reasons that Johns Hopkins University Press first asked me in 2015 to write a book for them based on my blog articles. I’m not a physician, but I include hundreds of citations in my book so that the women who show these to their physicians can feel comfortable sharing science-based medicine – not woo-woo snake oil.

I also have a couple of pet peeves I love to write (and rant!) about:

  1. the shockingly low rates of doctor referrals of eligible heart patients to life-saving cardiac rehabilitation programs
  2. the alarming failure of our healthcare system to implement mandatory reporting of diagnostic error

My fondest hope is that if I keep ranting about these two areas, and quoting every emerging study that validates the rant, someday both of these appalling situations will be finally addressed.

But I must tell you that one striking example I’m aware of on how my blog has influenced medical practice is a comment I received from a senior American paramedic who teaches emergency medicine to trainees. When I wrote a blog article about how women heart patients are treated differently in the back of the ambulance en route to hospital compared to their male counterparts experiencing identical symptoms, he wrote to me: “Carolyn, this stops today. With me! No more!” adding that his teaching curriculum would be immediately changed to reflect the study findings I’d written about. Something I wrote hit home for this man, who happened to be in a position to influence the education of future care providers. Wow!

Wow that’s incredible. It makes me so happy to know that there are health professionals out there who are paying attention to what we have to say online. I would also hope that in reading patient blogs they would come to a better understanding of the psycho-social aspects of serious illness. Do you think health professionals often ignore those aspects of illness which lie outside of the physical?

Yes. Next question?

Seriously, some physicians (particularly specialists) seem to forget that there is a whole entire person attached to the organ they happen to be focused on. As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained: “Cardiologists may not feel comfortable with touchy-feely stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.” I wrote a lot about this reality in my book, starting with wishing that I’d know before hospital discharge that post-heart attack depression is not only common, but also temporary and treatable. Mental health researchers call this ‘situational depression’. But not one person in that hospital – no doctor, no nurse, no janitor – nobody had warned me about the emotional and psychological fallout of such a life-altering medical crisis. It was five long months later when I showed up at Mayo Clinic that I finally learned that up to 65% of women with heart disease experience debilitating mental health symptoms after hospital discharge, yet only 10% are appropriately identified and treated.

That’s a sobering statistic. I believe we need to address these issues right at the point of diagnosis. What advice would you give to someone who is newly diagnosed with a serious illness?

C.W. That’s a frightening and surreal time for most of us. Let me quote my Alaska friend, Dr. Stephen Parker, who is both a cardiac psychologist and a survivor of multiple heart attacks himself, who says it beautifully when he talks about the “swirling emotions” that surround the freshly-diagnosed:

    • relief at survival
    • disbelief and anger that it happened
    • grief for everything that was and will be lost
    • gratitude to those who helped
    • extreme vulnerability in a previously safe world
    • fear of what the future might bring

So much depends on the diagnosis, the prognosis, the treatment plan, and the patient’s support community (if any). It can take a while for protective denial to wear thin so that we can begin to grasp, little by little, what is actually happening to us. It can feel like a roller coaster of ups and downs (mostly downs) in the early days. What I tell my own readers is this: your only job now is to become the world expert in your unique diagnosis. Knowledge truly is power, especially for women. And also – go outdoors. Spend as much time as you possibly can walking in nature. This won’t change your diagnosis at all, but you’ll be breathing fresh air and feeling the wind on your face.

We both share a low tolerance for certain metaphors used to describe illness. What are some of the metaphors you dislike the most? Do you think the language we choose to describe illness is important?

Thanks for asking about this. Language IS important!  In cardiology, for example, doctors talk blithely about the condition they call “heart failure” – as if they are utterly unaware how devastating those words can feel to a patient who hears them. Your heart is FAILING. Many  report that they feel unsure if they can even walk to the car after that. Doctors will also refer to patients who “failed” their treadmill stress test” or “failed the medication protocol”. Doctors use combat metaphors (“battling cancer” or “she’s a fighter”) which can make patients whose conditions decline feel like they’re clearly not fighting hard enough, or are somehow doing this wrong.

Do you think that patients sometimes don’t challenge their doctors because they fear they risk being labelled difficult? What advice would you give them and the healthcare professionals who treat them?

C.T. I believe this fear of being labelled a “difficult” patient is an overwhelming reality for far too many patients, and especially for women who have been socialized to be nice, to not make a fuss, to put the needs of others ahead of our own.  I like to quote landmark research published in the journal Health Affairs on this very subject.(1) This study was on how patients approach shared doctor-patient decision-making; the participants studied were wealthy, highly-educated residents of Palo Alto, the centre of Silicon Valley and home to the prestigious Stanford University. Yet the astonishing conclusion from researchers was the “fear of being categorized as ‘difficult’ prevents patients from participating more fully in their own health care.” Yes, even wealthy, educated, capable confident types!  And we are wise to avoid being seen as “difficult”. It turns out that another study last year suggested that diagnostic error rates actually go up if your doctor considers you to be “difficult”.(2)

How to get past this reluctance? I like to ask my Heart-Smart Women presentation audiences to guess what I would have done had it been my daughter or my sister or any other woman I love experiencing the same cardiac symptoms I was having? Like me, they agree that they’d be screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.

Finally Carolyn, your blog has captured hearts and minds across the globe – and now it has been turned into a book! Do you have any advice for any of our readers who might like to turn their own blog into a book?

C.T. I’d never even dreamed of writing a book based on my blog – right up until I was approached in September of 2015 by the Executive Editor of Johns Hopkins University Press (JHUP – the oldest academic publisher in North America!) who asked me out of the blue if I’d consider writing a book with them based on my blog articles. One of the many follow-up conversations I had with her over the next few weeks included this question: “Why would anybody buy a book when they could get most of the content for free by visiting my blog?”  That’s a good question for bloggers to ask themselves about their own project. I know a number of bloggers who have self-published their own blog-turned-book. There are pros and cons of each option: self-publishing vs. being published by an established traditional publisher. One thing I felt strongly about was that, even though my book is based on excerpts from hundreds of my original blog articles, I needed a very clear 10-chapter table of contents outline that carefully outlined the specific focus of each unique chapter.

What you don’t want to see is a series of disjointed chunks of your blog that look like they’ve been lifted willy-nilly and then tossed together like yesterday’s salad. Prepare to write lots of new transition sentences/paragraphs that will seamlessly link otherwise separate excerpts. This is much harder than you’d imagine! Also, as another blogger-turned-author Alice Callahan told me about writing her own book based on her “Science of Mom” blog: Don’t lose the unique ‘voice’ that you use in your blog writing.

Thank you Carolyn for taking the time to share your experience with our readers. It’s been a pleasure to interview you and learn from your story.

About The Book

A Woman’s Guide to Living with Heart Disease by Carolyn Thomas is published by Johns Hopkins University Press. It’s available in paperback, hard cover and eBook formats. Readers can save 20% off the list price by using the code HTWN when ordering directly from JHUP: https://jhupbooks.press.jhu.edu/content/womans-guide-living-heart-disease


Refs

  • Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Dominick L. Frosch et al. doi: 10.1377/hlthaff.2011.0576 Health Affairs. May 2012; vol. 31 no. 5 1030-1038.
  • Do patients’ disruptive behaviours influence the accuracy of a doctor’s diagnosis? A randomised experiment. S. Mamede et al. BMJ Qual Saf doi:10.1136/bmjqs-2015-00410. Online March 7, 2016.

12 Keys to Finding, Growing, and Nurturing Your Online Community

“If you want to go fast, go alone; if you want to go far, go together” – African Proverb

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation.  The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected to others who are going through the same experiences.   Online communities may be virtual, but they are no less real in terms of support and influence. We see just how much people are willing to reach out to others to provide advice and support – even to strangers online.

At the heart of a high-functioning social network is a strong sense of community.  Social media has accelerated the growth of patient and caregiver communities, allowing people to come together around shared experiences, regardless of time or place. For many of us, finding our online community has made a significant difference to how we cope with our illnesses.  From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our online community can make all the difference.

Your online community can be your eyes and ears, helping you find something you may have missed or not known about.  Isabel Jordan, the mother of a son with a rare disease, turned to her online community to help find a diagnosis for her son.  “Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”, she says. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.  Katherine Leon, an SCAD (spontaneous coronary artery dissection) patient, leveraged the power of her online community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic.

 

Five Ways to Find Your Online Community

Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are five practical ways to get started.

(1)  Find People to Follow on Twitter

Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow. You can also view my list of patient advocates on Twitter and add your own name to this list if you wish.

(2) Build Twitter Lists

Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others. Christina Lizaso, a moderator of the #gyncsm Twitter chat, has created several public lists worth subscribing to. See also this comprehensive list of patient chat community members created by Team Intake.Me. 

(3) Follow Relevant Conversations

The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example #cancer. Hashtags are a useful way to search for health related conversations.  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

(4) Join Twitter Chats

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

(5) Join Facebook, Google+ and LinkedIn Groups

On Facebook, Google+ and LinkedIn you can connect with other patients and join groups related to your disease or condition. Many organizations have a Facebook and LinkedIn presence and by following their pages you can keep informed of their activities and find other patients to connect with.

When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values? “Patients and caregivers seeking to join an online support community should ensure that they feel comfortable browsing a new online group before posting,” according to John Novack, Communications Director for Inspire, a healthcare social network with more than one million registered members. “Be an active lurker in a new group,” he advises, “and if possible, search for the topics most discussed there, because that will give you a sense of the overall focus of that community.”   Jo Taylor agrees: “Watch and lurk (i.e. you don’t have to contribute – just read what is said) or join in.  It’s up to you,” she says. “Don’t feel pressured to talk, but also don’t feel that you would say anything wrong.  It’s a friendly place.  Join in and meet others.” You might even find these online connections become friends offline too.  “I have met people from all over the world,” says Jo, “but some are in my own town and I see them regularly.  Whether you want online connections or face to face, both can happen due to the power of social media.”

 

7 Ways to Nurture Your Community

If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.

(1) Grow Your Community

A community is grown over time, not built overnight.  I reached out to Julia, also a moderator of #BCCWW, to ask about her experience of growing a Twitter chat. She explained that the community will evolve by trial and error, “but it’s important to know what it is you are aiming to achieve and why. If you can get that clear”, she says, “It will follow from there”.

Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that is key to building a successful online community.  As Erin Gilmer, founder of The Research Loop, points out, sometimes it may seem like there are only two people in a Twitter chat, but it turns out to be more, because many patients “lurk” but don’t feel comfortable tweeting openly. “Even if it’s just two of you,” she remarks, “it’s still a community.”

However, if your community is new you will want to build up your initial numbers to get started. Go through your e-mail contacts list and invite relevant people to join your community. Do the same with your followers on Twitter, Facebook, LinkedIn and any other social networks you are active on. Ask existing members to invite their friends.  When choosing which social network to communicate on, go for the platform your audience is most familiar and comfortable with.

(2) Provide Valuable Information

Building a sustainable community requires you to provide value and be responsive to the needs of that community. Think about how your group will become the go-to information resource for your members. This means you will need to create and share information on a consistent basis. Don’t automatically assume you know what the group need. Ask questions to better understand their issues and concerns. Invite researchers, physicians and other healthcare professionals to answer questions for your community through Facebook, LinkedIn, Twitter and blogs.

(3) Connect Members to Each Other

As humans we have an innate desire to feel connected with others who are going through the same experiences we are. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.” In the future new online tools will come and go, but our innate desire to reach out, to connect, and to help one another will remain.  “People seek community online to connect with other people”, says Colleen Young, Director of Community, Mayo Clinic Connect at Mayo Clinic. “If you want to build a thriving community, focus on the people, help them connect and get them talking.”  Introduce members to each other and connect like-minded people.  Think about how you might create common bonds, cultivate a sense of belonging, and build strong relationship among members.

(4) Listen: Don’t Judge

Do listen to your community and try to address their legitimate concerns. You may not agree with everyone in your group, but try to understand where they are coming from. Determine whether negative comments have any merit. This doesn’t mean you have to engage with trolls or unwarranted criticism. Sometimes people just want to cause drama or discord, so it’s important to put clear policies in place which protect you and your community from abuse.

(5) Reach Out and Support the Community

Collaboration, not control is at the heart of a successful community.  Reach out to your members and find out how you can help and support them. Find answers to their questions, retweet, favorite and share their content with others.  Equally, don’t try to do everything yourself. Co-create content with your members and ask for help when you need answers and support too.

(6) Nurture Your Community

When you nurture relationships in a human way, they flourish like friendships in our personal lives. Take time each day to interact personally by welcoming new followers, answering questions, acknowledging comments, addressing members by their name and thanking people for contributing to the conversation.  Also, take time to acknowledge birthdays, milestones and other achievements.

(7) Be Open, Honest and Transparent

Be open and transparent in all your online activities. Without honesty, you have no trust or credibility. Model the behavior you wish to see in the community. Be willing to self-disclose and encourage self-disclosure in others by creating a safe space for members that welcomes open and honest discussions.

Bonus Tip: Broaden Your Reach

If your goal in creating a community online is to influence policy or improve communication with a wider healthcare audience, you will need to broaden your reach to create impact. “Patient advocates who lead successful online groups and chats have to establish credibility with all stakeholders in a particular therapeutic area, if the advocates want to broaden beyond establishing groups of only patients,” says John Novack. “Some Twitter chat communities like #BCSM, #LCSM and #GYNCSM are powerful”, he notes, “because caregivers, clinicians, and technology leaders are regularly involved.”

Building a community is an ongoing process; it requires an investment of time, and according to Annette McKinnon, “a core group of committed and persistent people.” It’s about building trust, connecting people, and providing valuable information and support over the long-term. Your community is always about something greater than yourself. The best communities will provide a safe space to support each other, mentor and help each other grow. Whether you are joining a group for the first time or starting your own online community, consider how you might contribute your unique experience and expertise to make the group a more connected and inclusive space.  Finally, it’s important to have realistic expectations. A community requires “balance, and equanimity; a generosity of spirit; an expectation of complexity; a tolerance of frustration; a desire to listen, and to give,” says Andrew Spong, Lead, Health Equals.   “The truth may be that communities are less cohesive than they appear,” Spong reflects, “but they are still the best tools we have to create bonds with others of like minds and experience.”

Related Reading

#PatientChat transcript on online communities