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The Impatient Patient Advocates

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At the 10th Annual Health 2.0 conference in San Diego I had the honor of moderating a session celebrating a group of outstanding patient advocates and activists for their contributions to the field of digital health. They were chosen through a public voting process. The group was inspiring—their stories, sprit, and impact on the crowd was palpable.

In addition to these individuals’ contributions, it’s important to acknowledge the growing impact of patient advocates in aggregate. Thanks in part to the Internet, smartphones, and social media, patients increasingly exchange ideas for diagnosing and managing their health conditions, analyze and contribute data and research, provide social support to each other, and advocate to improve the healthcare system.

Though not everyone is deeply engaged in their health, the majority (72%) of Americans who use the Internet search for health data online. According to the Pew Internet Project, “I don’t know but I can try to find out’ is the default setting for people with health questions.”   This was not the case 10 years ago. Technology is a crucial underpinning, but the real change it enables is cultural—what’s happening here is a fundamental shift in the balance of power.

Patients—traditionally the passive recipients of healthcare services—today are asserting themselves as equal partners in their care teams. They are the experts in their own bodies and lives, and, in some cases, world-class experts in the details of medical science, too. While some people by necessity spend a significant proportion of their time managing their health or that of a loved one, it’s important to remember that we are all patients at one time or another—the patient engagement movement isn’t just about “them”—it’s also about you, whoever you are.

There is a growing appetite for change, whether that means improving your own health or that of your family, changing policy, designing products, building businesses, or helping to change culture. As e-Patient Dave urged the audience, “get angry PRODUCTIVELY—get active.” 

 Meet the Patient Advocates

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@MightyCasey

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Dave deBronkardt @ePatientDave 

e-Patient Dave is a cancer survivor and well-known speaker, author, and social media leader, famous in part for the phrase ‘Gimme my DAM Data.’ He is the author of Let Patients Help: A Patient Engagement Handbook, and his TED talk has been subtitled in 26 languages.

Donna Cryer 

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Erin Moore 

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Kym Martin  

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Miriam Kaufman

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 Miriam is a pediatrician and adolescent health specialist at SickKids in Toronto, Ontario, where she is the Head of the Division of Adolescent Medicine. She’s also Professor of Pediatrics at the University of Toronto. Miriam has written or co-written several books for adolescents, young adults and parents on living and thriving with disability.

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Regina Holliday @ReginaHolliday

Regina is the founder of the Walking Gallery—a movement through which patients tell their personal stories about health via paintings on the back of their jackets. She began her journey following the loss of her husband Fred and their difficult interactions with the healthcare system. She uses paint, public speaking, and social media to promote patients’ rights.

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Shannon des Roches Rosa @shannonrosa  – Shannon is Senior Editor at Thinking Person’s Guide to Autism, supporter of the Shot@Life vaccination program, BlogHer contributing editor, writer, parent, and self-described geek. Her work has been featured by Huffington Post, Parents, the New York Times, the Wall Street Journal and many other media outlets.

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Sharon Terry 

Also recognized but unable to attend were Christine Bechtel, a force in shaping pro-patient federal health IT policy from within and outside of the National Partnership for Women and Families, and Hugo Campos, who is leading a crusade for patient access to device data, starting with his own implanted heart defibrillator.

Also missing was our dear friend Jess Jacobs, who passed away in August.  In addition to being a patient activist, she was an innovator at Aetna, the FDA, and other federal agencies. She was a smart, funny and irreverent change-maker. As Donna Cryer reminded the audience, all of us owe it to Jess to keep fighting for better healthcare, better health, and better lives. 

Lygeia Ricciardi is the President of Clear Voice Consulting, a digital health consultancy based in the DC area.

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rmcnutt

Thank you for what you do. I believe chronic medical care decision making must be in the patient’s hands. Decisions control care. Physicians should back off. Hope my book helps you help others to fully participate in their own care. http://www.uncpress.unc.edu/browse/book_detail?title_id=3788 Please have your team follow me at @mcnuttYCM. I will reciprocate. There is much to do.