Will 2014 be the Year Patient Stories Come to More Healthcare Conferences?

The Stanford Medicine X 2013 Conference was one of the most successful healthcare conferences on social media according to Symplur who runs the “Healthcare Hashtag Project”. Symplur has archived more than 360 million tweets on Twitter for more than 3,482 different hashtags, 2,000 of which are medical, healthcare technology, and pharmaceutical conferences. Apple recently bought Topsy to uncover business intelligence from tweets, but healthcare has its own data goldmine in Symplur.

In a #MedX Google hangout this week, Symplur shared data that showed 25% of the tweets from the #MedX conference included the word “patient.” According to Symplur, this is significant. Medicine X had only 500 physical attendees over 3 days, but attracted almost the same social reach of HIMSS13 with over 14,000 attendees over 5 days.

Patient-centered healthcare
Although only 500 people attended Stanford Medicine X physically, the conference attracted 3, 564 participants on Twitter, showing the powerful engagement of its virtual audience.

Stanford Medicine X 2013

Stanford Medicine X 2013

 

HIMSS 13

Stanford Medicine X 2013

Bringing All the Stakeholders Together

According to organizer Dr. Larry Chu, the philosophy of Medicine X is to think beyond numbers,
It is more important to talk about bringing all the stakeholders together to innovate healthcare. I look forward to the day when people aren’t surprised that 25% of the discussion has the word patient in it when you are talking about a healthcare conference.

Stanford Medicine X has a unique ePatient Scholarship program, and includes patients as speakers. Some conferences allow patients to attend for free, but according to Medicine X ePatient Advisor Sarah Kucharski, “We have aimed to take it a step further. Depending on whether an ePatient is awarded a full or partial scholarship, MedX covers admission, transportation, lodging, and even meals. We want to keep our ePatients healthy!” Sarah hopes other conferences will think about building similar initiatives into their budget or seek out sponsors, so it is not a burden for patients to participate.

I interviewed Sarah Kucharski, a member of the Medicine X ePatient advisory board who oversees ePatient applications, to learn more about the program and the MedX experience.

Why are patient stories important?

We look so much at data, but data doesn’t have a face. Data is much more compelling when it is partnered with a patient story.

What is the role of patient stories online?

Patients are really filling a need of observational research. Being able to share experiences with other patients forms a community – a bond – and it really helps people feel that they are less alone. I am a rare disease patient, and it took me 31 years to get a diagnosis. For 31 years, I was absolutely completely alone. It took social media to actually connect with one other patient.

What is your advice for patients considering sharing their story but are not sure it is worthy of an ePatient scholarship?

I did not think my story was. It’s really interesting to me how many times, just in daily life, there will be someone who mentions something about their healthcare, their health story, and I end up sharing mine. We have this conversation, and it’s that “connection.” These are not great big, heady conversations, they’re just person-to-person conversations. And that is really what sharing your ePatient story is about, it’s not at all anything to be intimidated by.

I understand that some people have real concerns about sharing their story, about being public, about their work, their health insurance. That’s something only the individual can decide. For me, sharing my story has only been a positive.

Never, never doubt the power of your story. – Sarah Kucharski

One thing that I’ve really enjoyed is that across the patient community, there are more common threads than we necessarily realize. I may be a fibromuscular dysplasia patient, but that does not mean that I don’t have something in common with a Crohn’s disease patient or a brain tumor patient. We are all still patients. We still have the frustrations of illness. We still have caregiver issues. We still have health insurance and billing issues. We have all these shared experiences, even though the actual disease narrative may not be exactly the same.”

Applications are now open for the ePatient Scholarship program and close on January 10th for the 2014 Conference, taking place September 5th through 7th.

Archiving Patient Stories

While Symplur is archiving tweets, 23-year old Matisse VerDuyn hopes patients will start archiving their stories. Matisse was able to find a correct diagnosis through social media and a Mayo Clinic Twitter chat. When Matisse was 19, he had one of the fastest bat speeds in the U.S., but an injury interrupted his dream for a baseball career. After his wrist did not improve, Matisse discovered Dr. Berger who had solved the puzzle of the UT ligament tear in the wrist, and helped MLB player Jason Werth turn his career around.

While recovering, Matisse now had time on his hands for the first time in a busy student-athlete life. He decided to teach himself to code. This changed everything. Matisse built Permamarks, and was recently invited to present at the Ideagoras Innovation Conference in Madrid.

Matisse VerDuyn of Permamarks at Ideagoras

Photo Veronica Botet

Matisse explains that valuable content disappears from the web every day leaving dead links because hosting is abandoned, websites are changed, and people die.

But patient stories shouldn’t have to die. They can be preserved to help other patients, says Matisse. He wanted to give individuals the power to archive, something only large institutions or organizations previously had the ability to do.

“Everyone has at least one piece of digital content they wouldn’t want to lose. If you don’t save it, who will?” – Matisse VerDuyn

Patient Stories Proven to Change Health Behavior

The challenge to healthcare technologists in 2014 is how to use patient stories to drive behavior change. According to Dr. Thomas K. Houston from the University of Massachusetts Medical Center, when patients tell their stories, health may improve. As reported in the New York Times, Dr. Houston conducted research showing the potential of personal narratives to alter behavior and improve health. In a study of people with hypertension, Dr. Houston found:

All the patients who viewed patient stories had better blood pressure control, but those who started out with uncontrolled hypertension were able to achieve and maintain a drop as significant as it had been for patients in previous trials testing drug regimens.

Invite Patients to Drive Innovation at Healthcare Conferences

It’s clear the voice of the patient is growing. There is much knowledge to be gained. Healthcare conferences are where new ideas are presented and exchanged. Will 2014 see more healthcare conferences inviting patients to tell their story and co-create new solutions?
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Angela

Angela writes for HL7standards.com on health innovation, wearable tech, Quantified Self, IoT, mHealth, and future trends. Follow Angela on Twitter at @HealthIsCool.

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