Using Social Media to Inform Patients in Real Time

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Alongside interviewer Carol Preston, Dr. Michael Thompson explores some of the new and exciting technology utilized in healthcare and the benefits it presents. To make medical meetings and conferences accessible to all patients, real time feeds are used to “attend” meetings from around the world. The types of feeds available to patients include twitter feeds, blog posts, and even live streams with apps Meerkat and Periscope. This allows patients a valuable insight into what is happening at the national level and makes information easier to find when researching their disease. Watch the clip below as Dr. Thompson explains more fully:

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Using Social Media to Inform Patients in Real Time from Patient Empowerment Network on Vimeo.

Virtual Patient Communities

Virtual Patient Communities Engendering A New Social Health Era

Howard Rheingold, who coined the phrase virtual communities, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” Rheingold’s words, though descriptive, may not fully capture the depth and breadth of experience many patients find when they go online.

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media in particular, has lessened this sense of isolation. It has shown us how much people are willing to reach out to others to provide advice and support – even to strangers online. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”

There are as many reasons for joining a virtual community as there are communities online. Probably the most common reason people go online when they (or someone they care about) are diagnosed with an illness, is to find information. Figures from the Pew Research Center show that 1 in 5 Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – 1 in 4 – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.

For some patients turning online for support is more convenient; not everyone can attend an in-person support meeting at the time they most need it. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

For others, it is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online.

“When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to Facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, alongside eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over”.

Personal stories and first person accounts of illness are the life blood pulsing through the social media healthcare eco-system. By telling your story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing. Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path.

“As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.

In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need. Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, leveraged the power of her virtual community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says, “in 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google”.

If stories are the life blood of an online patient network, a strong sense of community is at its heart. Members share an emotional connection to each other and a sense of shared experiences. They have a feeling of belonging to and identifying with the community, believing they matter within the community and they can influence and be influenced by them. Diabetes patient and advocate, Renza Scibilia believes that “there can be real solidarity when you are part of an online community.” She writes, “one of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories”.

What does the future hold for virtual patient communities?

In David Weinberger’s book, Too Big To Know, the author argues that we are in a new age of “networked knowledge”; meaning that knowledge – ideas, information, wisdom – has broken out of its physical confines and now exists in a hyper-connected online state. Translating Weinberger’s argument to healthcare, the narrative is one in which the uptake of social media signifies a radical transformation of established notions of patienthood, with patients now situated within connections to other patients, family members, carers and healthcare professionals, creating a new social health experience.

CEO of Smart Patients, Roni Zeiger M.D., is convinced “that our next exponential leap in medical progress depends on us learning from networks of micro-experts.” The learning that begins in virtual patient communities can quickly translate to offline activity. Corrie Painter knows first-hand the power of tapping into a network of micro-experts.

“When people find us now”, she writes, “it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren’t possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of our collective need to connect with others diagnosed with angiosarcoma”.

In the future, new online tools will come and they will go, but our innate desire to reach out, to connect, and to help one another will remain. It’s people who ultimately build communities, not technology. The communities may be virtual, but they are no less real. It’s still individuals speaking to other individuals, people helping other people. What’s changed, to quote Sussanah Fox, Chief Technology Officer at U.S. Department of Health and Human Services, is that we now do it at the speed of internet connectivity. Fox thinks that “the most exciting innovation of the connected health era is people talking with each other.” That may sound simple, but as the stories in this article illustrate, talking with each other can have profound and far-reaching effects in our connected digital age.



A European Patient Advocate Speaks Out

(Editor’s Note: Christine Bienvenu is on the Board of Trustees of our sister organization in Switzerland, the Patient Empowerment Foundation)

ePatient Advocacy

In hindsight, I can honestly say that my ePatient advocacy started in 2008, when my eldest son was diagnosed with Asperger’s Syndrome. With Switzerland rather behind (at the time) in its knowledge about – and treatment of – Asperger’s, I could only find information and communities online that was based in North America. With absolutely nothing like it available here in Switzerland, I decided to create an online platform; today, we are some 300 members who care, share, and support. Our son is thriving in the mainstream schooling system, thanks to our advocating, as parents, for him.

In 2010, my world imploded when four words were uttered: “Triple-Negative breast cancer” (TNBC). Within a year, I’d had 6 rounds of aggressive chemo and a double mastectomy. As for my son, I became my own advocate in TNBC, reading, researching, and asking questions, connecting online with breast cancer patient communities in North America.

There was nothing like it here in French-speaking Switzerland. Health Care Social Media (HCSM)? Unheard of. Patients as partners? Nope. Online patient communities? Way too virtual. While indeed outstanding, the Swiss healthcare system today is highly paternalistic.

So there I was, trying to come to terms with my triple-negative diagnosis, with no local online community to connect with, yet wanting to be able to make empowered, well-informed decisions, and desperately hungry for support from patient peers and access to quality content.

 Social Media and Online Community Expert

Time and treatments marched on. With it, my passion and interest in digital health, HCSM, and patient empowerment grew exponentially – so much so that I became a certified Social Media and Online Community Expert. My thesis involved creating a social media ecosystem with multiple channels (blog, Facebook group & page, Twitter account & LinkedIn page) that would concentrate all breast cancer-related information for French-speaking Switzerland into one easily-accessible space, open 24/7…

A few good girlie brainstorming sessions later, “Seinplement Romande(s)” was born. For those who don’t speak French, “sein” means “breast”. “Simplement” means “simply”. Melding the two, I created “Seinplement”, playing on the notion of the breast and simplicity. The word “Romand(e)s” is a nod to the French-speaking Swiss. As soon as it was launched, the platform took off. Today, members from a number of French-speaking countries are able to connect.

Two weeks before I was due to defend my thesis, I found out I had relapsed. Let my cancer get in the way of earning my diploma?? I.Think.Not. I defended my thesis. And then tackled another 15 rounds of chemo and 28 rounds of radiotherapy. The cancer was knocked into remission by year-end.

HCSM Patient Expert

During my treatments, I focused on promoting patient advocacy and empowerment through social media, connecting with the communities I had founded, meeting ePatient Dave deBronkart and volunteering to translate his “Let Patients Help!” book into French (“Impliquons les Patients”, available on Amazon), attending classes, speaking at international conferences (including the digital health conference, “Doctors 2.0 & You” in Paris in June 2014 and June 2015), and meeting with medical professionals keen on empowering today’s patient. In the meantime, I’ve been hired as Health Care Social Media (HCSM) Patient Expert by both the Geneva University hospital and the Lausanne outpatient university clinic.

On this journey, I’ve seen the importance of having an open-minded, communicative medical team. Last spring, I changed my entire medical team. Trust me: Not easy here, where respect for the “White Coat” is both deeply ingrained and rarely challenged. As hard as it was to do, that very change may have just saved my life…

Access to Clinical Trials

This past July, I yet again relapsed. This time, my new oncologist is young, dynamic, open to participative medicine and shared decision-making. She’s also a researcher. The advantage? Access to clinical trials. In fact, she had the wisdom to do a biopsy to see if my Triple Negative status had changed, and indeed it has: I am now HER2 positive.

Thanks to her discovery, I can benefit from a more targeted treatment plan – something I wouldn’t have had access to if I had still be considered a Triple Negative patient. Only Time will tell. I’ve only just begun my treatments. What I do know, though, is that I will do everything in my power to keep up with advocating for patient empowerment.