Patient Advocacy: Ten Tactics for Mastering Social Media Success

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.

It’s Not About Vanity, It’s About Identity

Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Auroro, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.


Appearances do matter. Let’s face it. Whether we like to admit it or not.

My appearance has always mattered to me. But cancer takes over your appearance, forcing you face an unknown entity in the mirror. Even with average looks and physique, I was always comfortable in my skin. Until cancer.

I dreaded hair loss as many do, but little did I know there was more to dread.

How I wish someone had told me losing your hair is minor, wait until you lose your eyelashes and eyebrows. Hair aside, the eyes are the gateway to your soul. My eyes without the familiar frame of eyelashes and eyebrows look distant, shallow and colder. I became a face no longer recognizable even to myself.  

The injury added to the insult is my body ravaged with scars. Each day brings a new blemish in some unexpected place. Bruises even on the tops of my feet. Aches and pains so deep no topical or pain medication can even touch it. A body that wants to lie in bed all day.  I don’t want this to be my body. I don’t know this body.

My scalp feels constantly agitated as hair grows back. Yet, I can’t run my fingers through wavy, soft hair, it’s a mere patchwork of kinky, coarse sprouts of regrowth. I can compensate. I can wear my “hair” aka ‘a wig’. I have scarves, headbands and hats to rival any celebrities accessory closet.  But I’ve lost the appearance that used to be uniquely me.

Wigs itch, as do most hats. Scarves are equally obviously just covering the sparseness underneath. All just poor attempts to mask the reality anyway. When in public with any headwear it’s impossible not to be self-conscious. Some days I think, certainly I shouldn’t have to put on this façade. But I do. Day after day.

And why is that? Aren’t we living in a more enlightened period? We’ve moved stigma of cancer beyond whispers and shushing in society to being more vocal and “out” about our disease, haven’t we?

Sadly, not completely. When I was completely bald, I did my own social experiment if you will, I ventured out with the least possible masking of my illness. Just a simple hat. No attempt to conceal my pinkish scalp. No fake bangs or wisps of hair to falsify it. No attempt at false eyelashes or painted on eyebrows. Just me trying to be bold.

Everywhere I went. Eyes averted mine, no one looked me in the eye. The store clerk pleasant enough, kept turned from direct eye contact. Other shoppers browsing, fixated on store racks instead of acknowledging me. I caught a few stares, but when I smiled at them to ease the awkwardness, they just looked away as if caught in some sinful act instead of pure curiosity.

For the first time in the span of an entire day, not a single stranger approached or spoke to me. What an isolating way to go through a day. Was it just me giving off the vibe of unfamiliarity and therefore calling it to me? Who’s to say or know? But it didn’t feel good. Experiment failed.

So, I put my hair back on and join friends who accept me with or without hair. An act that is not about vanity, it’s about identity. Cancer can strip you of the visual aspects that we attribute to vanity. But when cancer not only reflects the disease inside, but projects a spirit uncharacteristic of you to the outside, it becomes about your identity.

In the moments we find to escape our illness; the music can play, the rain can stop for the sun to shine through again, the rainbows can appear. But amid the laughter and smiles, no one has any idea of the burden of sorrow on the mind and soul of those in the cancer experience. They go home at the end of the day, reflect on their worries that while significant are typically not about life or death. We go home at the end of the day and have to study meds to make we’ve stayed on schedule. Feel distress at the new pile of bills and claims owed. Play catch up with the pain or nausea. Then we try to settle into bed and clear our minds of the gravity of the living with a lethal diagnosis.

My hope is that instead of internalizing the slights of strangers, we can find it an interesting study in human behavior. Or the next time we see someone in an obvious state of illness, we can make eye contact, extend a compliment, or project a smile. Don’t let any appearance dissuade you from doing so.

Health Literacy – Bedrock of Empowerment

The Internet is a wonderful thing. It helps people across the globe connect, communicate, and argue about everything from the Oxford comma to what’s really in a hot dog. Full disclosure: I’m all about the Oxford comma, and avoid hot dogs because I don’t like nitrites.

I come from the time before the Internet – in other words, I’m well over 50 – but as a journalist I embraced digital technology as soon as it arrived (for me, that was 1980), and have been using it to fact-check ever since. Which is why I view health literacy as the foundation of patient empowerment, and helping build health literacy as the mission of empowered, activist patients worldwide. And why I view the Internet as our best tool for health literacy building, personal and community.

Because health literacy requires a grasp of basic science, it can feel challenging to someone who didn’t love biology class, or who found themselves floundering in physics lab. That’s where patient communities really shine: helping newly diagnosed folks figure out what the heck that was that the doctor said, or how to read a lab report, or why [insert condition here] even showed up in the first place.

Here is what I consider the Top 3 Things for yourself and your family’s health literacy building:

  1. Know your risks. What is your family’s health history? Is there a line of folks who lived to 80+, or a family history of heart disease and stroke? Did you grow up in an area with a lot of industrial pollution? What’s your personal health history (asthma, sports injuries, etc.)? Knowing these things can help you, and your clinical team, set up an “early warning system” to monitor your health status.
  2. Write it down. Once you start gathering information, write it down. You can keep it as simple as a composition book, or as complex as a spreadsheet. The key is to keep records that you can share with your doctors, and your family, to keep everyone informed. There are online services, including mobile apps, which can help you do this. A good overview of that whole universe is on the MyPHR site.
  3. Read all about it. When you have data (the information from #1 and #2), you can start turning that data into knowledge. Learn, from trustworthy, science-based sites like Medscape, MedLinePlus, and com, what the straight scoop is on symptoms and treatments for pretty much any disease or condition that affects humans. Add Health News Review to your reading list for solid myth busting on the latest medical miracles (spoiler: they’re usually not miracles) by health journalists with years of experience. Bonus tip: if you’re looking for cost information on specific treatments, check out Clear Health Costs.

You now have three things to get you started. You’ll see more on the health literacy topic from me in the coming months, and I welcome your questions and topic suggestions. Let’s learn, teach, and share, together!

Highlights from Friday 7/7 Empowered #patientchat

On Friday, July 7th, 2017, we hosted an Empowered #patientchat where we discussed communication. Effective communication takes a lot of effort, and that is especially true when it comes to health matters. We had another great turnout during the How To Communicate with Your Care partner tweetchat with 516 participants and over 1.7 million impressions. The #patientchat tweeters helped us to define a care partner and shared how important it is to have an honest, open, and working relationship with your care partner. Lastly, some tips and resources were shared for when care partners might need some help. Check out some of the highlights below.

Reflections From an Advocate: ASCO 2017

Every year the American Society of Clinical Oncology (ASCO) brings together nearly 40,000 oncology professionals from around the world to discuss new treatments and innovations that will, hopefully someday soon, improve care for the more than 15 million Americans currently battling cancer.1

In recent years, advances in immunotherapy, precision medicine and insightful use of “big data” have dominated discussions. This year was no exception, but there was also something tangibly different that permeated the conference. Most meetings I attended and conversations I had focused on the urgent need to increase participation in clinical trials.

As patient advocates, many of us patients and care partners ourselves, we know that participation in clinical trials is absolutely necessary for innovation. Nearly every advance in cancer care available today was first evaluated in a clinical trial. But even as we know this to be true, the fact remains that only 3% to 6% percent of cancer patients who are eligible for clinical trials participate.2

Reasons why so few patients participate in trials are well documented. Fear of receiving a placebo, concern over side effects, perception of being a “guinea pig”, and other fears are quite often so deeply engrained that they can be difficult to overcome. In addition to those fears, patients face the uncertainty of out-of-pocket costs and inconvenient travel to trial locations among other practical concerns.

So, what can we as advocates do to make a difference?

  • Be part of the solution. We need to recognize that each of us has a critical role to play in dispelling widely held misconceptions about clinical trials. With the help of Astellas and other like-minded sponsors, my organization, Patient Empowerment Network, launched a new program this year called Clinical Trial MythBusters to help build a basic understanding of trials and debunk common myths.
  • Education is the answer. We need to work together to enhance basic science and health literacy to enable shared decision-making that includes clinical trials as a potential solution. The Cancer Support Community created tools that every patient should have access to: Open to Options and Let’s Talk Treatment Options.
  • Provide assistance. Organizations like Lazarex Cancer Foundation and Family Reach provide patient access to clinical trials and a financial lifeline for cancer patients and their families.
  • Encourage minority participation. Diversity in clinical trials is essential to help researchers improve treatments for diseases that disproportionately affect individual populations and ensure the safety and effectiveness of new therapies for everyone.
  • The sum of the whole is greater than the parts. We need to work together and be active participants in pan-advocacy initiatives, like the Coalition for Clinical Trials Awareness. Together, we really can make a difference.
  • Lastly, and perhaps most importantly, we all need to acknowledge and thank the courage it takes to participate in a trial. There was one slide amongst the thousands I saw at ASCO that gave me reason to hope. This is the first time I’ve seen patients and their families thanked for their participation in a clinical trial and I hope it isn’t the last.

References

  1. Cancer Facts & Figures 2017. American Cancer Society. Accessed June 7, 2017. Available at: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2017/cancer-facts-and-figures-2017.pdf
  2. Cancer Research Institute 2017. Clinical Trials. Available at: https://www.cancerresearch.org/patients/clinical-trials

The DisCONNECT OF CANCER

Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Aurora, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.


The descriptions of first hearing “you have cancer,” all follow a common thread – shock, denial, surreal, as are the emotions and reactions to the news – disbelief, despair, fear. However, I suspect few people ask themselves in those initial stages of grasping the news, “I wonder how many people I care about will disappear from my life as I fight cancer?”

But it happens. I hear it over and over, with dizzying similarity. I was one who never even contemplated the idea any of my loved ones would not be there to through my cancer experience. But it happened to me immediately, gradually and then again abruptly, long after I was down the road of treatment.

And I never saw any of it coming.

At first, there were the expected disappearances. Colleagues, neighbors and distant friends, upon hearing the news either would at first react with sympathy, then the avoidance began. A random colleague would pile up his papers and laptop before the meeting ended and be up and out the door with barely a nod to me. I’d be out walking my dogs and see a neighbor coming around the corner – not realizing I’d seen them – turn to walk the other direction. The e-mail update and invitation to follow my fight on MyLifeline.org site went unacknowledged by more than a handful of long term friends. One couple I had introduced to each other and later married, I’ve not seen or heard from during this 5+ year odyssey. Another couple my husband and I went out with rather regularly at first were adamant they would be all over me helping. I heard from them daily the first week, the last call being to find out what type of soup I preferred. The soup never came. Nor did they, ever again.

Both are still receiving my emails and updates, they never come back undeliverable, I see their updates on social media, so I’m confident they are alive and well. For whatever reason, they’ve chosen not to be a part of my path.

At first it hurt terribly, then I did my best to employ all the psychological and human behavior knowledge I’d gleaned throughout my life.. It was easier to understand once I divorced myself from the hurt and focused on what defense mechanisms those absent friends were using.

Most people don’t know what to say or how to say it. So they avoid the topic entirely. And in the case of cancer, where it’s next to impossible to avoid the topic because it can be all consuming; avoidance of me, as well as the topic seemed to be the natural conclusion.

Even with that understanding of the likelihood absence was their defense, it doesn’t change how much I  miss them, I miss knowing about their lives. I miss their energy and spirit. I miss their friendship.

There are the people who show up in the grand way which helps you cope with those who can’t show up. The support system that come over, pick up the phone to reach out, send cards, books and other resources. Asking for ways they can offer help. Wow. Mind boggling how some people will come out of the woodwork.  And how fortunate we are for those who do.

Then there are the very sad stories of cancer totally wrecking you to your core. Those, for me, were the ones that came quite abruptly later. But in my travels and exposure to cancer patients near and far, I’ve heard about spouses serving divorce papers, children who lash out and misbehave, parents who aren’t present at chemo sessions or surgeries, friends who drop you from social gatherings. The entire gamut. How do you explain these crucial relationships that come crashing down?

Over my 5+ year battle, even a handful of those who stepped up in the most generous and productive ways eventually disappeared too. I barely have had the stamina for this duration of time, how could I ask anyone else to? But there are equally just as many who were there are Day 1 and are still here on what is around Day 1,991. For all of them, I’m eternally grateful. They have carried me through.

But back to those significant relationships that collapse, what logic explains those? Not being an expert in the field of human psychology, I can only comment based on my own personal circumstances

For me, it was two nearly life long friends who left my side with extreme abruptness and even more extreme callousness. Amid harsh words both of them, who did not know each other, accused me of using my cancer as an excuse to be horrible and nasty to people. Furthermore that they only stayed friends with me due to feeling sorry for me having cancer. Wow. One went so far to say how sad it was I needed help with my laundry and who really did I know who would want to launder my dirty underwear? True and unfathomable.

My personal interjection here is: where is the compassion and where is the sensitivity? I have a terminal diagnosis, even if I were a bad person to be around during my cancer, wouldn’t a true friend help you identify and seek out ways to help you cope differently? What motivation and impure intent has to be behind hurtful and hateful words that are spewed knowing the dire circumstances of a person they claim to love and care for? Would you say such things to a person with life threatening heart disease, addiction or diabetes? How does going for the jugular help the person in a medical crisis? How does deserting them help power them through healing to a cure?

Those are the questions to ask yourself when you seek to recover from the abandonment of anyone significant while you are struggling with cancer. What would a reasonable person do in the same situation? How would they help you cope and manage? Would they put hurtful, hateful adjectives around you and blame you for your plight?

No.

Is it possible they had to create conflict with you to push you away because they couldn’t bear to see you suffer?  Or because they couldn’t fix it? Or because they were sheerly self-referential, unable to cope with mortality, yours or their own and just wanted to be free of the confines cancer can bring?

In other words, odds are, it’s not you, it IS them. I wish I could wave a magic wand and tell every person who has leaned on my shoulder, who has confided to me in tears about who has left or worse, their words, who has “rejected” them since their diagnosis. Every story of this nature, pierces my heart again as if it were happening to me all over again.

All I can do is suggest that as painful and prickling as it is, hold your head high. You did nothing to deserve being abandoned nor did you cause your own cancer. If a significant person in your life cannot walk through the fiery coals with you and carry you if needed, you do not need them there with you. It is not an easy lesson, and trust me, I replay it over and over as to what I did wrong and should’ve done differently; all the while knowing the outcome would likely be the same. They may have left anyway.

There are thousands of quotes and adages about allowing another person to leave when they want to leave. For whatever reason. The true and pure individuals will return. They may or may not have answers for you as to what or why they were driven to desert you. This would be the happiest conclusion, the true meaning of closure.

The best way to view this situation when and I hope, only IF it happens to you; you sweep all the negativity and the pain of it aside. Allow yourself to immerse yourself in those who can be present, who do show up, otherwise you’d be preoccupied with hurt to invest in the people who can put aside their own needs, who can sacrifice their own potential for hurt and loss to be there without reservation, without stipulations and without complaint.

Then the decision belongs to you, whether you welcome them back into your life or not. I’ve asked myself, if ever had the chance to reconcile with the immediate, the gradual or the abrupt departures could I or would I? It remains to be seen as it hasn’t happened yet. All I can predict is that, for me, and this is only me, it would be hard to edit out this huge segment of my life and resume a friendship the way it was. It doesn’t mean it can’t be a different relationship, but it also doesn’t mean it could never be resurrected. But I don’t have to worry about that right now. If it ever does happen in my lifetime, I will be sure to let you know what I choose to do.

Male Survivor Prostate/Bladder Cancer… A Diary Entry

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

Today I am a male survivor of bladder and prostate cancer – annual Oncology visit…still here, still healthy, PSA still less than 1%. Possibility for bladder cancer’s return are extremely minimal. That’s now six years in remission. Now thinking about removing the alien (aka port). To those either starting to deal with this inconvenience or have dealt with it…STAY POSITIVE!

Where it began…. The port was installed yesterday. No big deal, only discomfort came from injection site for the IV (I have crappy veins) and learning how not to sleep on my right side…could be worst. Day 1 of chemo was this morning not bad. I have an incredible oncologist, he’s upfront, informative and has a sense of humor!! The entire Cancer center staff is incredible. With their support, my great friends and especially my wife, the road (although, interesting) will be made a lot easier. Day 2 (consisting of three significant meds) will be interesting.

Completed my first round of chemo yesterday, only two rounds (8 treatments) remain. What have I learned; trust your doctors, do your research to be as informed as possible, surround yourself with positivity, support your body’s recovery by; eating, staying hydrated, and stay positive.

Last week’s sessions marked the halfway point for me, as well as reminded me how tough back to back treatments can be. The good news, my oncologist feels chemo is working and that’s all I need to know. My Christmas present…no treatment this week, well deserved!!

Having a positive, ‘I will survive this’ approach is the only one to take if living is your objective. Due to the aggressiveness of my ureteral carcinoma, bladder removal is being proposed as the best (next step) option. It’s the consensus of four doctors. This includes my oncologist who is someone that consistently emphasized a focus on my life’s quality and quantity above all else. As a result, we continue to have very frank and realistic conversations. Essentially, I trust him. It will be a significant change, however a good friend endured a similar situation more than six years ago. Her insight benefited me greatly during chemo and I’m certain, will continue prior to and after surgery. Stay positive and continued success to you.

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).    The prior 12 months allowed me to experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks’ post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Not that I think about it…. I didn’t have a good time.

This week my last three-month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…. THANK YOU!!  I can only hope to do the same for others!

Immunotherapy Patient Summits 2017

The Cancer Research Institute (CRI), the world’s leading nonprofit organization dedicated exclusively to advancing scientific efforts to develop new and effective immunotherapies for all forms of cancer, announced that its 2017 Immunotherapy Patient Summit Series will travel to five U.S. cities to provide free educational programming designed for cancer patients and caregivers who are seeking to learn more about cancer immunotherapy and clinical trials.

Immunotherapy is a type of biological therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Some types of immunotherapy only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG), and some monoclonal antibodies.

Building on the success of its inaugural Immunotherapy Patient Summit hosted in New York City last September, CRI has expanded the 2017 program to include the following cities:

Who Should Attend?

People of all ages, cancer types, and stages are encouraged to attend this FREE half-day Saturday event. Caregivers, friends, family, and advocates are also welcome to join us at this important educational summit.

The half-day events will bring together patients, caregivers, and expert scientists and clinicians to discuss the latest cancer research and treatment focused exclusively on immunotherapy. Each event will offer foundational education and information on immunotherapy treatment and research, patient perspectives on immunotherapy clinical trials, and cancer-specific breakout sessions. Patients can also meet with clinical trial navigators who can help connect them to immunotherapy trials for which they might be eligible. Across all the events, patients will have an opportunity to interact with scientists and clinicians who are leading the way in this important field, hear from patients who have benefited from immunotherapy, and interact with others from their community.

What Will Be Discussed?

Summit topics will include

  • Immunotherapy basics you need to know
  • Latest research update from the experts
  • Patient experience with immunotherapy
  • Clinical trials: what they are, how to access them, and patient experiences
  • Cancer specific breakout sessions

How Can You Participate?

Register today (at no cost) for the event nearest to you below. For those unable to attend in person, register for the live streaming option. Space is limited, so don’t delay.

To reach as broad an audience as possible, a live streaming option during the New York City event will also be available to individuals throughout the U.S. and abroad.

The summit series kicks-off immediately following Cancer Immunotherapy Month™, a global awareness campaign in June CRI created five years ago to call public attention to exciting breakthroughs in cancer immunotherapy and the need for more research to make this promising treatment approach an effective option for all cancer patients. By extending educational efforts beyond June, CRI will be able to reach more patients in need of critical information to help inform healthcare decisions.

“CRI has dedicated more than six decades to advancing the science of immunotherapy with the ultimate goal of harnessing our immune system’s potential to cure all cancers, and we have reached a critical point where patients are playing an even greater role in the success of these efforts,” said Jill O’Donnell-Tormey, Ph.D., CEO and director of scientific affairs at the Cancer Research Institute. “We are proud to expand our patient focus and, alongside our scientist and donor communities, facilitate patient knowledge of immunotherapy and clinical trials that will help lead to breakthroughs in cancer care.”


About the Cancer Research Institute

The Cancer Research Institute (CRI), established in 1953, is the world’s leading nonprofit organization dedicated exclusively to transforming cancer patient care by advancing scientific efforts to develop new and effective immune system-based strategies to prevent, diagnose, treat, and eventually cure all cancers. Guided by a world-renowned Scientific Advisory Council that includes three Nobel laureates and 26 members of the National Academy of Sciences, CRI has invested $344 million in support of research conducted by immunologists and tumor immunologists at the world’s leading medical centers and universities, and has contributed to many of the key scientific advances that demonstrate the potential for immunotherapy to change the face of cancer treatment. To learn more, go to cancerresearch.org.

The Advocate’s Guide to Reporting Live from 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. I believe it is part of our role as advocates to make these learnings accessible to all and live-reporting is a powerful way to do this. Furthermore as attendees, the experience of live-tweeting can enhance our own personal learning.  It requires us to listen more carefully and focus more sharply on the key details of a talk so we can better summarize what the speakers are saying in 140 characters.

Quite often, multiple vibrant discussions happen on Twitter as questions or insights are shared from other conference attendees and from those listening in online, thereby creating a parallel virtual meeting. Similarly, if a meeting has parallel sessions, live-tweeting enables conference attendees to listen in on multiple talks simultaneously. This learning can be further consolidated with an archive of tweets on which to reflect back after the event.

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.  Because of its ability to give people who aren’t at an event a sense of what is unfolding as it happens, live-tweeting (sending real-time updates via Twitter) is a popular way to capture the immediacy and energy of an event.

Whether organizing an event, taking part in person, or tuning in online via live-streaming, the following guidelines will help you better prepare to report live from your next conference or event.

Before The Event: Get Organized

1.Create a Custom Hashtag

If you are organizing the event, create a custom hashtag (#) and let people know in advance what it will be. Keep the following tips in mind when choosing a hashtag.

  • Make it short. Remember people only have 140 characters to tweet with and you want to leave some room for re-tweets.
  • Make it intuitive and relatable to your event but not so generic that it’s confused with something else.
  • Make it easy to remember and type for delegates. Many will be tweeting from a smart phone or tablet.
  • Make sure it isn’t already in use. You don’t want to duplicate an existing hashtag which may result in two simultaneous but very different conversations colliding on Twitter. Do a Twitter search to find out.
  • Monitor your hashtag on a regular basis to see if someone else is using it for something unrelated.
  • Register your hashtag with Symplur’s Healthcare Hashtag Project. Doing so will also allow you to access analytics after the event.

2. Create Twitter Lists of Speakers and Attendees

Creating lists on Twitter of those who are speaking and attending the event is a super way to keep track of their tweets. These lists will help you prepare in advance by making sure you know the correct names, affiliations and Twitter handles of key speakers and attendees. It is also a useful way of finding other like-minded people attending the event whom you can network with.

3. Set up Saved Searches

Use a Twitter client tool to set up a saved search of the conference hashtag and @usernames. A tool like TweetDeck or HootSuite will allow you to have multiple columns open for different Twitter searches, helping you to keep track of several sessions at once.

4. Prepare Some Tweets in Advance

Things move fast on Twitter, particularly when you are live-tweeting.  Having some pre-prepared tweets on hand helps you stay organized and feel less overwhelmed in the moment.  This is particularly helpful if you are including photos or graphics with your tweets, since image editing can be time consuming.

During The Event

5. Tag Your Tweets with the Event Hashtag

Once you start tweeting live, make sure to use the designated event hashtag.  Let your followers know the meaning of the hashtag and why you are tweeting from the conference.  Provide a link to the event page so that people have some context to what you’re tweeting about. It is good practice to let your followers know in advance that you are live tweeting so they can mute the hashtag if they aren’t interested in those tweets.

If you are organizing the event, keep an eye on unofficial hashtags. Sometimes, people tweet using hashtags that make sense to them instead of using the official hashtag. This shouldn’t be an issue if you have chosen a simple, intuitive hashtag and promoted it in advance, but it is still a good idea to an eye out for rogue hashtags and direct the users to the official one.

6. Focus on Value

The objective of live-reporting is to provide value to others, so avoid tweeting sound-bites that won’t make sense to online listeners. Be selective about the quotes or insights you choose to tweet and only post high-quality photos and videos that your followers will find interesting. No one wants to see a blurry photo of a speaker or a slide.

Strive for originality and context and make it relatable to your Twitter followers.  Tweet links to websites, studies, or other information which will enhance understanding of the topic. It’s fine to highlight your own expertise, but don’t spam. Retweet attendees and speakers who represent your mission and core values. Search for questions being asked using the event hashtag which you can answer.

7. Don’t “Binge Tweet”

Be selective, share key points only and avoid flooding your timeline with tweets. Don’t mindlessly re-tweet what everyone else is already tweeting, unless you can add a unique perspective. When live-Tweeting, one Tweet every five minutes is a good rule of thumb.

8. Give Correct Attribution

Be sure to attribute quotes to the speaker who made them, by using quotation marks. Whenever you cite a speaker, add their Twitter handle and affiliation if known (this is where those pre-prepared Twitter lists come in useful). Separate your own comments/viewpoints from the speaker’s own words.

9. Encourage Engagement

Don’t tweet in a vacuum; engage with fellow live tweeters and contribute to a larger conversation. Involve online listeners by asking questions; e.g. “Speaker X says doctors need to be more empathetic – do you agree/what do you think about this?”

10. Be Social

Don’t restrict yourself to tweeting behind a screen; take the opportunity to network and meet new people face-to-face too. Live-tweeting is a great way to meet like-minded people, so use it to organize “tweetups” at coffee and lunch breaks during the event to further the connection.

After The Event

11. Archive Your Report

After the event has finished, you can still add value by using a tool like Storify and/or Twitter Moments to archive tweets.  You could also summarise the event in a follow-up blog, embedding selected tweets to illustrate your points.

Twitter Abbreviations:

# = hashtag

@ = a way to address a Twitter user

RT = retweet, share something already tweeted

MT=modified tweet, indicates you have modified an original tweet

HT = hat tip, acknowledge or thank a source

DM = direct message

CX = correction

Live reporting from conferences and events is an important part of our advocacy work. It expands the reach of information, research, and data beyond the physical limitations of a conference or event. It also offers an opportunity to highlight your own influence and expertise.

Encourage other advocates to join you in reporting live because the more multiplicity of voices we can bring to an event, the more we can amplify our voices and be heard. As with medicine, there is both an art and science to live reporting. Follow the tips outlined in this article to take your live reporting to the next level.

Highlights from Friday 6/9 Empowered #patientchat

On Friday, June 9th, 2017, we hosted an Empowered #patientchat where we discussed health communities. A health community is group of people (personal, medical, psychological, or spiritual) on your “team” that you trust and respect for emotional support, open and honest communication, and to share information or experiences. Communities are a key component of patient advocacy and help many of us cope and grow during difficult times. We had a great turnout during the chat with numerous participants tweeting their ideas and opinions on the topic. The #patientchat community expressed how important it is to have a health community that shares common interests and knows what it is like living with a particular disease. Check out some of the highlights below.

Male Bladder Cancer Survivor…A Diary Entry

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I was diagnosed with terminal systemic metastatic bladder cancer in 1991. I was given 3 to 9 months to live and sent home to get my “things” in order. The doctor recommended that I take a cruise! This was after bladder cancer was found in 1990, treated surgically twice, and I was told all was fine.

Fast forward to 2011.

I am working in Lebanon as a police trainer after serving 3 1/2 years training police in Iraq.

Since it has been a “few” years since my initial treatments, I have lost much of the details I once knew so very well. Since my cancer bout, I have lost my father and brother to cancer, among many friends and other family members. Only God knows who dies and who lives but I know what the doctors did to me that the others didn’t have the good fortune of having done to them and I credit that to my good health, cancer free status and living life large. It was excellent doctors, with excellent medications guided by Gods hand and the experimental High Dose chemotherapy that saved my life. It took me six months to fight the disease, but after that it was all downhill. I went back to work as a deputy sheriff and completed another 10 years for a 27-year retirement. I worked a couple little jobs before going to Iraq as an International Police Instructor and I have never slowed down.

I know that the decisions facing ever cancer warrior are daunting. I know that had I been given the option of removing my bladder, I don’t know what decision I would have made at the time. However, being fortunate enough to have hindsight, it would have been the best course of action for me. I wasn’t given that option and was told after having undergone surgery twice and a session of mild chemo each time, I was cancer free and sent on my way. We of course must believe our doctors and want to believe we are cancer free, but thinking back…. my bladder was completely full of cancer although “they said” it did not permeate the bladder wall. Obviously, it had or did, and circulated throughout my body. I had bladder cancer on my lung, behind my heart, inside my left femur as well as other places. In fact, that was how I learned that the cancer was systemic. When the cancer was flowing systemically, I felt no pain but when it permeated my femur and ate away about 4″ just above the knee, I had pain. I didn’t relate it to cancer in the beginning and my doctor fed me pain pills until I could no longer tolerate the pain. That’s when I learned that I was terminal and the rest is now history.

I hear lots of people saying to listen to their doctors, do what their doctors say, but I am the first to caution about putting too much faith in your doctors. Consider what they know, but it’s your life, not there’s and if it doesn’t make sense, then it’s your duty to research and engage in frank open and meaningful dialogue with your doctors. Life goes on and it is a minor inconvenience to give up your bladder compared to the alternative.

My prayers are with all of you fighting cancer. It is a nasty terrible disease but NEVER SURRENDER and hit it HARD. This is not a time to handle this disease delicately. I underwent three sessions of High Dose chemotherapy. It was difficult, and experimental, but it sure beats living for 3 to 9 months even if I had taken the cruise….and by the way…in early 2006 I took a 3-week cruise to Hawaii anyway!

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts

At the recent American Society of Clinical Oncology meeting (ASCO), Dr. David Carbone, Director of the James Thoracic Center, James Cancer Hospital and Solove Research Institute at Ohio State University Comprehensive Cancer Center and Dr. George Simon, Professor in the Department of Thoracic/Head and Neck Oncology at The University of Texas MD Anderson Cancer Center, share highlights from the meeting including what they call “progress on multiple fronts in lung cancer.” Dr. Carbone discusses how patients should demand a genetic workup on their tumor and his free genetic testing initiative at Ohio State. Dr. Simon shares how some immunotherapy and chemotherapy combinations are showing promise and how small cell lung cancer patients could potentially also benefit. Watch the video below to hear from two lung cancer experts.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts from Patient Empowerment Network on Vimeo.

Open to Options® – A Cancer Support Community Resource

The Cancer Support Community has created a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you.

We had the chance to talk with CSC’s research manager, Jamese Johnson, about Open to Options®, and this is what she had to say.

Tell me about Open to Options® and what unmet need does it serve?

Making a decision about cancer treatment can be an overwhelming experience for many people. Important decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible. Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.

As you look at all the treatment options with your doctor and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments such as surgery, chemotherapy and radiation, can have difficult side effects. It’s important for you to weigh the benefits and the challenges, and make a decision that is best for you.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

Who is this service for- patients, care partners, and/or families? How would they use it?

This service is primarily meant for patients who are considering treatment options, but family members can be included in the Open to Options® session.

How can they benefit from using Open to Options®?

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief 30 minute to one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you. Open to Options® has been shown to reduce distress, increase confidence in asking questions, reduce decision regret and lead to more productive consultations between the patient and the health care team, including important conversations about clinical trials.

In addition to Open to Options®, Cancer Support Community has also created Let’s Talk Treatment Options. How can patients use this resource?

Building on the success of the Cancer Support Community’s treatment decision counseling program, Open to Options®, Let’s Talk Treatment Options provides an interactive tutorial to help cancer patients build a personalized question list that outlines important questions, concerns and important goals and priorities related to treatment.

How can patients and their families learn more and get help in using the tools?

Open to Options® is available through our Cancer Support Community affiliates. Find an affiliate near you. If you are unable to find a program near you, call our Toll-Free Cancer Support Helpline, 1-888-793-9355, to speak to a helpline counselor about the program.

To learn more about Let’s Talk Treatment Options, our online tool, please check out http://www.talkingtreatment.org/

ASCO 2017: Ask The Prostate Cancer Experts

From one of the largest educational and scientific events in the oncology community, we had the chance to sit down with a few prostate cancer experts to hear the latest news coming out of the ASCO 2017 conference. The panel included the following experts:

  • Philip Kantoff, MD, Chair, Department of Medicine, Memorial Sloan Kettering Cancer Center
  • Daniel Petrylak, MD, Director, Genitourinary Oncology, Co-Director, Signal Transduction Research Program, Yale University Cancer Center
  • Sumit Subudhi, MD, Assistant Professor, Department of Genitourinary Medical Oncology, Division of CancerMedicine, The University of Texas MD Anderson Cancer Center
  • Darryl Mitteldorf, LCSW, Executive Director, Malecare

The panel covers a variety of headline topics such as treatment options, prognostic factors, genetic marker, clinical trials, and more. Check out the full video to below to hear from four prostate cancer experts.

ASCO 2017: Ask The Prostate Cancer Experts from Patient Empowerment Network on Vimeo.

What’s The Fix? – Free Conference

What’s The Fix? is a conference that’s been launched as part of #WhatTheHealthCare – people kicking the hell out of health care and coming together to commit to change and is brought to you by HealthSparq.

What Is It?

A free, one-day online and in-person conference on June 14, 2017 in Cambia Grove, Seattle dedicated to those working from the outside in to change health care for the better – for everyone! You’ll hear from an amazing range of speakers including:

  • A college student who leveraged YouTube to call out a hospital’s terrible patient experience
  • A mom devoted to finding help for her sick child when she was told it wasn’t possible
  • Educators from medical schools who are breaking the mold for the future of health care

That’s not all – they’ll work hard to connect everyone who attends online and in-person to create lasting change.

Who Should Attend?

Anyone with an interest in fixing health care is welcome to attend either virtually or in-person! They believe their conference speakers and panelists will relate to everyone, but those who many find the most inspiration are people already demanding change: parents, caregivers, patients, patient advocate, AND those who can commit to making changes based on what they hear at the event: providers, health system professionals, insurance executives and others inside the health care system. 

What Will You Gain?

An understand of how a single person can drive change in health care, real tools to make positive changes and inspiration to start your own change movement! You’ll also connect with an amazing community of fellow attendees that will stay engaged into the future through continued events, a LinkedIn group, and Tweet chats!


Be sure to join our Empowered #patientchat – Finding Your Tribe this Friday, June 9th on Twitter at 1pm ET where we’ll discuss health communities or tribes with special guest HealthSparq.