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Patient Advocacy: How to Create a Visually Compelling Message

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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. An effective advocacy message is credible, clear and convincing.  When it comes to creating content to support your message, the type of content you create matters.

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 information more quickly. Furthermore, in an increasingly crowded social media landscape, images can break through the online clutter so more people can find your message.

6 reasons why visual content is effective at getting your message across

  1. People are drawn to images. Eye-tracking studies show people spend longer looking at images on a website than reading text.
  2. People connect more emotionally with images than text.
  3. Our brains process images faster – up to 60,000 times faster than text.
  4. We remember pictures better than any other stimuli. According to neuroscientist, John Medina, we will remember 10 percent of information three days later. But if we add a picture recall goes up to 65 percent.
  5. Images are a universal language. They can be understood regardless of language differences.
  6. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content according to research by Buffer.

How to create your own eye-catching visuals

It used to be the case that to create graphics you had to have graphic design skills, but now any one of us can design eye-catching images using a variety of free and easy-to use apps and online tools.   Below you’ll find listed some of my favorite sites which I use to create professional looking graphics – without spending a cent.

  1. Canva is one of my every-day go-to tools when I am creating visuals. Whether you want to create a Twitter post or Facebook header image, you can do so quickly using Canva’s drag and drop editor. Select from a number of pre-set designs or create something from scratch. It has a multitude of layout options, fonts, images and illustrations to choose from.  You can also add elements such as custom icons, fonts, charts, and illustrations.
  2. Quotes Cover turns quotes or short text into images for social media. You can also use it to create high-resolution images for posters or other print design. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.
  3. Stencil is a super quick and easy way to create graphics. It gives you access to 860,000+ background images. You can add whatever text and/or graphics you’d like to these and directly share them on social media. If you like sharing quotes on social media you can take advantage of their ready to add quotes feature.
  4. Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.
  5. Infographics are a great way to present your data in a creative and visually appealing way (see this infographic created by metastatic breast cancer advocate, Jo Taylor, to raise awareness of the signs of secondary breast cancer). To create your own infographics, use a tool like am.
  6. Use Screencastify to create screenshots. This is one of the easiest ways to create images to simply and clearly explain a concept. I also use Snagit and Awesome Screenshot to create my screenshots.
  7. Social Media Resizer is a useful tool to optimize your images for each of the social media sites you are sharing on.  If you don’t size your images correctly for each social network, people won’t be able to see or read them clearly.

Where to find the best images for your graphics

I’m sure you already know that you can’t simply use pictures that appear on Google’s image search. Instead, you need to use a site that provides images licensed as “Creative Commons” — this means the pictures are completely free to be used for personal purposes. The following list of image sites are all great sources of Creative Commons (CC) images.

  1. Flickr is a popular photo sharing platform that allows users to store, sort, search, and share their photos online. It includes a section for photos that have been shared with a Creative Commons license.
  2. FreePik offers users, high quality graphic designs and illustrations. It operates on a freemium business model which means, the majority of the resources offered at Freepik can be used for free, only having to credit the author of the illustration to Freepik.
  3. Pexels provides over 3,800 high resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the CC license.
  4. Pixabay hosts over 650,000 free stock photos, vectors, and art illustrations free of copyrights under Creative Commons. The site also has a collection of stock videos. On the home page, you’ll find a small, curated collection of images and a search bar for more targeted results.
  5. Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.
  6. The New York Public Library This site is a living database with new materials added every day, featuring prints, photographs, maps, manuscripts, streaming video, and more.

With so many tools out there, there is no excuse for poor-quality visuals.  Whether it’s a Facebook cover photo, a blog image, or an infographic, there are tools for every skill level. Experiment to find which tools work for you and use them to add more visual appeal to your social media campaigns.

Leveraging Social Media for Patient Advocacy #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice

Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 

Just Start

 

 

 

 

Think About When You Were Sick

 

 

 

 

Full Chat

 

Applying Patient Advocacy Initiatives to Your Patient Journey #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on applying patient advocacy initiatives to the patient journey with special guest Seth Rotberg (@Srotberg15). Seth is a rare disease advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. The #patientchat community came together and shared their best advice and tips.

Top Tweets and Advice

 

You Have Power

 

 

 

 

Be Confident

 

 

 

 

Patient Advocacy Has Benefits

 

 

Full Chat

 

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

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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 Graphics — Even If You’re 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 Live, Instagram 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!

 

Patient Advocacy: Six Steps to Craft a Compelling Message

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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.”

Patient Advocacy: Understanding Your Illness

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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

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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

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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.

Patient Advocacy: Ten Tactics for Mastering Social Media Success

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Social media extends beyond the world of Facebook and Twitter. It encompasses blogs and other newer social platforms such as Instagram, Snapchat and Pinterest. If you want to raise awareness of your cause, amplify your patient advocacy activities, and create change where it’s needed most, social media is an important channel to share your message with the world.

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

1. Define Your Purpose

The success of any strategy, whether it happens on or off line, starts with defining a clear purpose for your activities. Ask yourself what you want to achieve with social media and then set specific and actionable goals to achieve it. Goals are the forerunner to success. You need big-picture long-term goals and smaller weekly or monthly goals that allow you to stay on track. For a goal to become a reality it needs to be specific, measurable, attainable, and realistic, as well as time specific. These are often called SMART goals.

Let’s take as an example, a goal to grow your Twitter followers, the following are the steps you would take to make this goal SMART.

  • Specific. The more specific you can be in defining your goals, the easier it will be to clearly see what it is you are trying to achieve.
  • Measurable. Give your goal a number. For example you could state you want to double the number of your existing Twitter followers or grow your following by 10%.
  • Attainable. Is your goal attainable? Can you realistically double the number of your Twitter followers? Or should you aim for a smaller increase to start with?
  • Relevant. Does this goal support your organization’s (or your own personal) objectives, vision, or values?
  • Time Specific. Give your goal a deadline, for example, “I will double my Twitter follower numbers by 10% in three months.”

2. Perfect Your Social Profiles

As I’ve written here before, patient advocates who are looking to change hearts and minds should consider the image they present online. 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 questions in mind.

  1. Do you need to update your bio with new information? Is there a project you are currently working on? Or a campaign you are part of?  Add this information to your biographical details.
  2. 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. You also 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.

3. Focus on Being The Expert One Channel 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 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. Look back on the past six months and ask yourself what you were good at doing. What worked well for you? Then do more of the same. Aim to become known as the go-to expert on one channel before you move on to the next one.

4. Create Share-Worthy Content

If you want people to share your content, you need to give them something worth sharing. The New York Times did a fascinating study a few years ago on the psychology of social sharing. It revealed that people want to connect to other like-minded people and they want to support issues they care about. Above all they want to share content that will be useful for those others in their network. Create content that your audience will want to share because they believe it will be of value or interest to others. Don’t just add to the online chatter. Before you post something, stop and ask yourself would this pass the re-share test? Why would I want to click on this information? Would I want to share it with my friends/family?

5. Create More Visual Content

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. 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. There are many tools out there which 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. Make It Easy For People To Share Your Content

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. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. Make it easy for readers to share your posts by incorporating share buttons for the main social media sites on your blog. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.  Use a tool like Click to Tweet which generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares and highlight relevant quotes, stats, and key takeaways.

7. Leverage Hashtags

A hashtag (#) is a popular way of creating and monitoring a conversation on social media. While most often identified with Twitter, posts can also be tagged on Instagram, Pinterest, Google Plus, and Facebook. Don’t over-use hashtags on Twitter. Research shows that tweets with more than two hashtags actually see a drop in engagement. Check the Healthcare Hashtag Project for relevant healthcare hashtags.

8. Maintain a Consistent Content Creation and Promotion Schedule

Social media marketing is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing. Set aside one day each month to map out upcoming events, holidays, and so on, which you would like to write or post about. Then use a simple excel spread sheet to create your content calendar. Do the same thing with another spread sheet for social media postings.

One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics to see the most popular posts you’ve written. Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck. By re-purposing content you have already written, you can extend and breathe new life into your current and past content. Check out these ten creative ways to repurpose your content for more ideas.

9. Optimize Your Engagement

To optimize your social media engagement, it’s useful to know the best times to post your updates so they reach your audience when they are online. If you search for optimum posting times, you will find many guides online. They vary in their advice, so it’s always a good idea to do your own testing to determine the optimum times for your own particular audience. Once you’ve determined your optimum posting times, use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often.

10. Track and Measure Your Progress

How do you know if all the time you’re investing in social media marketing is paying off? You don’t know unless you put a system in place to measure and analyse your progress. Most of the main social platforms has their own analytics built in. Regularly tracking and measuring your activities on social media helps you see what is working (or not).

Using these ten tactics will help you focus on your goals more clearly, promote your key messages better, and measure your activities more effectively. Don’t expect all of these tactics to work right away. Social media is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, remember the goal is not to be good at social media for its own sake; rather the goal is to be good at patient advocacy because of social media. Social media are powerful advocacy tools, but they are just tools. It’s within how you master those tools that the real power lies.

Seven Steps to a Successful Digital Advocacy Strategy

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MEO SeptDigital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. 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 mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organisation, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • TweetReach measures the reach and exposure data for your tweets
  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

Building A Digital Ladder Of Engagement

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Building A Digital Ladder Of Engagement

In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.

This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.

What is Digital Health Literacy?

Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.

First Steps

If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.

App icons on white cloud with smart tablet and ladderWhen you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.

Facebook

On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.

Twitter

While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.

Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you.  It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.

Find People To Follow On Twitter

Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.

How To Find Health Related Conversations On Twitter

(1) Advanced Search

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 – for example “diabetes”. You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

(2) Hashtags

A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.

(3) Twitter Chat

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. 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.

When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.

(4) Conference Live-Tweeting

Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.

These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.

A Rising Tide

The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?

Finding the Right Care for You

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Telling the Full Story

I’m a bit miffed at the moment. I was just on the cancer treatment center site where I received my care and the opening page reads in bold, “Ranked No. 5 in U.S. for Cancer Care”. Seriously, ‘No. 5’? It made me pause and think, why on earth would anyone want to be treated for something as severe as cancer by an organization claiming they’re ‘No. 5’?

Having gone through the experience of cancer treatment and knowing what I now know, I wouldn’t begin to consider being treated by ‘No. 5’. Fortunately for me I wasn’t, I was treated by ‘No. 1’. I was treated by subject Center that’s advertising ‘No. 5’, yet treated by same as ‘No. 1’? Confused?  Don’t because what I have to share is important to anyone diagnosed with cancer.

Cancer is complicated. Individuals diagnosed with the same type and stage is often different in symptoms, characteristics, and multiple treatment options from one patient to the next. There is no such thing as one size fits all when it comes to treating cancer. Thus you need to be cured by people who are qualified, knowledgeable, and above all, experienced. There are many moving parts in a cancer diagnosis; underneath, there’s a ticking clock.

For the record, I fired ‘No. 5’ following my diagnosis. They may officially be more like ‘No. 500’ but to me it didn’t matter, I knew they weren’t ‘No. 1’. During my initial visits, I met several of the team and didn’t like what I heard. Spare the details but trust had I stayed the course, doubtful you’d be reading this post. Determining your provider is literally a life and death decision, trust me.

Finding ‘No. 1’ requires research, networking, and a bit of luck. All applied in my case and I was fortunate to meet my oncologist. In the initial interviews, I brought along extra ears because you don’t hear every word the doctors communicate. Following the initial meeting with ‘No. 1’, my friend said, “You don’t need look further, he’s your guy.” I didn’t need the affirmation…but it helped.

I’m confident in every rated cancer center in the country there’s a ‘No. 1’ for a specific disease. Conversely there’s also a ‘No. 5’. So placing an overall rating or ‘quality #’ on the Center for validation of an overall one size fits all treatment is misleading. It is equivalent to rating a restaurant. They’re given ‘star’ ratings. You pretty much know what to expect given number of stars. However, when it comes to the food, some dishes are better than others with multiple chefs.

Randy and Renato MartinsThe point is you need to find a team of professionals knowledgeable about the recipe and how to bake it. The best way I know to accomplish is interview several, listen with a minimum of four ears, and make sure you are comfortable with the answers. If not, move on until you do. This is at the core of being an empowered patient and taking an active role in your healthcare. Something that is being stressed more and more as we move to a value based healthcare system.

‘No. 1’ he told me I would be treated with, ‘Intent to cure’. This is physician speak to get your mind thinking along the lines of living opposed to the alternative. What matters is treatment protocol and how adjustments are made along the way. In many cases what begins as a straightforward pathway quickly becomes finer tuned.

I was deemed operable following my first round of chemo. While on the table and wide open, I became ‘inoperable’ due to undetected infected lymph nodes. While splayed open like a gutted fish, my team of doctors debated best strategy for moving forward. Do we remove the lung, leave it, take out a portion, how long recovery from each, what next, etc.? Throughout they’re calculating potential outcome staying true to their objective of, ‘Intent to cure’. This is all transpiring real time while the anesthesiologist drip line keeps on trickling.

Making adjustments as new developments present themselves as described is not the work of a ‘No. 5’. It’s clear and straightforward, ‘No. 1’. Living proof is the most valid testimonial I’m aware of.

Before you put a label and a ranking on any organizations service, make sure you’re telling the full story. Not just what some independent association attaches from a myriad of data points. There’s a lot more under the hood than stating you’re ‘No. 5’ and posting for the general public. Personally, my Center, and more importantly the people within who treated me, is ‘No. 1’. That’s the bigger Story and one you can live by.

Patient Advocacy – Views and Opinions at #ASH15

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ASH 2015 Convention Hall

ASH 2015 Convention Hall

Twenty thousand people congregated in Orlando Dec 5th-8th for the annual American Society of Hematology meeting. A good number of them were patient advocates, from organizations all around the world. ASH did recognize these organizations and did give them a designated space on the exhibit floor, but did not give them free entry to the poster sessions, for instance, a practice that was criticized by some.

The Advocacy – Industry Relationship

Genentech slide

Slide at the Genentech dinner talk

The buzz at the meeting was that industry was becoming more and more amenable to partnering with these advocacy groups and to committing to try to understand the patient experience. The lunches and dinners and panel discussions that I attended were full of patient advocates who were conversing with the executives from pharmaceutical companies, answering their questions and themselves posing questions about the role of the patient in corporate decisions and strategy. At the Takeda Oncology Patient Advocate and Industry panel discussion, Fatima Scipione, Senior Director, Patient Advocacy for Takeda stated with conviction, “Patient impact is in everything we do.” Gail Sperling, Senior Manager, Information Resource Center at the Leukemia and Lymphoma Society, followed through with this concept by adding, “Pharma really values the patient voice because they realize how important it is.”

At the Genentech dinner talk, industry and executives discusses how collaboration between advocates
and industry leaders benefits everyone. They talked about a patient-designed clinical trial that they had worked on and explained that how having patients participating from the outset really helped the overall trial outcomes.

Will this continue? Will it evolve? Hopefully it will and hopefully it will result in a clearer understanding by industry and providers of the patient’s crucial role in his own healthcare. There was a comment at the Takeda Patient Advocacy and Industry panel discussion that struck me –  “The relationship between patient advocacy and industry should be genuine and sustainable”. Let’s hope that this becomes the case.

How Can We Reach More Patients?

With Advocates Andrew Schorr and Cindy Chmielewski

With Advocates Andrew Schorr and Cindy Chmielewski

The patient advocates that attend ASH and other “Patients Included” medical meetings are extremely sophisticated in their knowledge of medical information and social media. They are confident individuals that are extremely web-savvy. They are members of various organizations and support groups for patients, and they have a “voice” online that is strong and respected. Other patients who are online listen to these POLs (Patient Opinion Leaders) and pay attention to what they say. And that is wonderful and so very helpful for them.

My question is this – How can patient advocacy organizations and POLs reach the patients that are NOT online? How can we go to patients that are not as tech-savvy or web-savvy and offer to help them find information about their illness, find help in support groups and get, perhaps, better care for themselves?

These patients would be the ones that are NOT being treated by a major cancer center. Nor would they belong to a patient community or support group. How can we reach them and introduce them to the strong online voices that we have in the patient advocacy community? Perhaps the older patients do not go online and are not savvy with social media or online patient support groups, but someone in their family surely is – their spouse, their children?

Should we reach out to families everywhere to ask them to advocate for their loved ones with cancer? Should we send out fliers to senior centers? Go through community organizations? All of the above? I don’t quite know the answer but I really would like to reach these patients. If you have an idea, please comment below. I would love to hear your thoughts on this!

Be Your Own Best Advocate

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(Editor’s Note: Gina Goldfarb is a cancer patient and founder of New Beginnings Coaching Services, LLC, which helps women with breast cancer cope with the emotional and physical challenges of a cancer diagnosis.)

Gina Goldfarb

Gina Goldfarb

I have walked in your shoes. I have been in the shoes of a caregiver and I am a breast cancer survivor and I am a certified professional coach with a niche in survivorship.

I have seen firsthand how being your own best advocate throughout the cancer experience can give you your power back and get that feeling that you really are in control at this time.

It all comes down to choices. As a coach, the value that I deliver to my clients is around educating them on how we show up daily in our experiences, providing awareness to them, showing them that we do have options and choices, despite the fact that we are experiencing very heavy emotions and may feel like we are at the effect of what is happening to us. We can often feel like we are “victim” to our experience, our doctors and our caregivers, but that is just chatter that our mind creates. It is also completely valid and normal for what we are going through, but we can shift our energy to a more empowering place where we start to be the cause of our lives, meaning we jump into the driver’s seat and take back control by becoming an active participant.

Patients need to educate themselves about their disease so that they can have intelligent conversations with their doctors. In this age of technology, we have so many resources at our disposal online. There are so many websites, support groups and organizations that offer information about a particular condition. We can look into conventional medical treatments and alternative treatments that compliment each other. It crucial that patients avail themselves of these resources to better understand their condition and treatment options.

When I was initially diagnosed and went through the series of testing that brought me to a place where my doctor told me I needed a mastectomy, I had already known what I was going to do, but I pursued the following dialogue with my breast surgeon: The conversation went like this: “I understand what you are telling me medically, but I want to ask you this a question…as a woman, what would you do if you were in my shoes?” Her answer was quite poignant and exactly the choice I had made before I even posed the question to her. Her response was: “I would probably have a double mastectomy.” I told her that is what my choice in my gut was and where I wanted to go with this. Thank God I went with my gut, because after surgery they found more tumors in one breast and pre-cancer in the other breast! Based on my experience and my own research, I knew this was the right choice for me. I was my own best advocate!

I just had an experience with a client where she felt like her doctors were ignoring her concerns and putting off her surgery for more than a month because of their scheduling. She told me she felt victim to and at the control of her doctors. Having a relationship with your doctor is like having a relationship with any other individual in your life, it has to be reciprocal and it has to feel right. She called me to check in a few days later and told me that based on our last coaching session, she had seen other doctors and was now looking at different options and resources. She took additional action to reach out to other doctors who understood the urgency of her disease and she was now having surgery in just a few days instead of waiting and delaying the disease growing in her body for an additional 30 days as her original doctors had advised her. She took a proactive role in her health based on her own research and knowing that she had other options!

Our medical doctors are experts who are focused on medicine and getting us healthy. They treat us depending on what we tell them and if we don’t take the time to dig deep, do our own research, ask questions and tell them all of our concerns (even if we feel like we are taking their time up or being “annoying”) it is something we have to do! If we don’t ask questions our doctors are only going to act based on what we are telling them. If we don’t have the right relationship with our doctors it may affect our energy level and how we move forward in our action.

The bottom line here is that no matter what your diagnosis or prognosis is, we have choices! We have options, resources, the right to second opinions, we have the right to ask questions and a choice on what energy level we are going to live in each day living our lives each day moving forward.

 

 

 

 

 

First Day at ASH 2014: Thoughts and Takeaways

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First Day at ASH14 – Thoughts and Takeaways

Friday was the first day of ASH14, the annual American Society of Hematology conference, taking place this year at Moscone Convention Center in San Francisco. The actual program starts on Saturday but Friday was marked by several Patient Advocacy meetings and presentations.

The feeling is, among the patient advocates, that the patient voice is gaining strength but must get stronger still. Patient advocates from Germany, Switzerland, France, Israel, Brazil and many more countries met and discussed issues common to all countries. All hoped for a synergistic approach to patient empowerment and support. Topics discussed were how to improve doctor/patient communication, how to screen for reliable information on the internet, forming partnerships between patient organizations to gain reach and strength,

Some key tweets today reflect topics that will be talked about tomorrow:

 

Learn how discoveries in RNA bio & immunology contribute to novel therapies at 2 special scientific symposia

Find out how high drug costs influence treatment adherence, quality of life & overall health at the Symposium on Quality

FDA approves Blincyto to treat a rare form of acute lymphoblastic leukemia

FDA approves Ruxolitinib for the treatment of patients with Polycythemia Vera

Stay tuned!