Social media patients deserve a following, too

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This past October, I published a report for FierceHealthIT highlighting champions of social media healthcare. The report, "11 faces to follow in healthcare social media," profiled some of the most innovative and optimistic personalities in healthcare today.

However, my focus never veered from individuals on the provider side of the aisle. And boy, did I hear about it. Several times each day in the weeks following the report's publication, I would receive emails or comments asking "Where are the patients? Aren't they worthy of representation, too? Why are there only institutional folks on this list?"

One comment in particular--from participatory medicine and social media advocate Dave deBronkart (aka, e-Patient Dave)--caught my attention.

"So, is there any reason no just-plain-patients were on this list? At first blush it sounds like this list reflects the old school view," he wrote.

As that hardly was my intent, I struck up an email correspondence with deBronkart, in which he pointed out to me several motivated e-patients and social and preventive medicine (SPM) advocates, including:

  • Virna Elly (@VirnaElly): Elly, who was diagnosed with type 1 diabetes at the age of 8, refers to herself as a professional patient. She currently blogs on "Patient's Perspective."
  • Kari Ulrich (@FMDGirl): Ulrich, who in April 2007 was diagnosed with brain aneurysms and a rare vascular disease known as fibromuscular dysplasia (FMD), also preaches the benefits of SPM. Ulrich, a registered nurse, also runs the Fibromuscular Dysplasia blog.

In addition to my conversations with deBronkart, I also received an email from Michael Dornan, a Melbourne, Australia-based IT consultant who suffers from psoriasis. Earlier this year, Dornan created a Facebook-like social network specifically for psoriasis sufferers called PsoriasisSocial.org. After seeing how quickly patients caught on to his site, he decided to expand on the idea, creating a similar site geared toward all patients called social-medicine.org.

"I felt Facebook was the wrong place," for such discussions, Dornan said. Still, he added, "it became immediately clear that patients were ready to engage with each other....I've spoken to quite a few medical professionals, and the savvier of them agree that patients are ready to engage and that we need to step up."

Other notable individuals who use social media to advocate for patients' rights include:

  • Donna Cryer (@DCPatient): After a liver transplant due to autoimmune conditions, Cryer experienced all of the highs and lows that the healthcare system has to offer. Now, Cryer serves as a patient advocate through her company, CryerHealth, which promotes the premise that patients should drive their own healthcare.
  • Lygeia Ricciardi (@Lygeia): Ricciardi helped her newborn daughter--who was born with a hole in her heart--avoid a life-threatening surgery by using all of the IT tools at her disposal and being a fully engaged parent. She serves as a senior policy advisor for consumer e-health at the Office of the National Coordinator for Health IT (ONC), and also is the founder of Clear-Voice Consulting, which focuses on improving healthcare through technology from a consumer point of view.
  • Regina Holliday (@ReginaHolliday): After a series of hospitalizations, Holliday's husband Frederick passed away due to kidney cancer in 2009. Since then, through Twitter and her medical advocacy blog, Holliday pushes for patients to be as active as possible in their own care and the care of their loved ones. She also pushes for clarity and transparency in medical records, particularly through her renowned series of murals. Holliday began the patient advocacy movement known as "The Walking Gallery," in which people from all walks of life wear patient-centered care paintings on the back of business suits, jackets and other attire.

Clearly, through the persistence of patients and advocates like the ones mentioned above, the quality of patient-centered care has been--and can continue to be--improved. Social media helps to spread the message that patients who opt to be actively involved in their own care are an asset to both themselves and those around them.

Just because a patient doesn't have an "MD" after his or her name, doesn't mean he or she shouldn't receive the same recognition as other healthcare social media advocates. Crow's not my favorite dish, but I'll happily chow down on some if it means giving credit where credit is due. - Dan

P.S.: What other patient advocates deserve to be recognized? Share your thoughts with us on Twitter or LinkedIn, or in the comments section.