Forget Patient Engagement, It’s Patients Leading the Way Online

Posted by on Apr 20, 2015 in Uncategorized | 0 comments

Patient engagement was a buzzword in many of the sessions at the Healthcare Information Management and Systems Society (HIMSS) annual meeting here in Chicago last week. But in the hallways and on social media, it was patients and patient advocates driving the conversation.

 

Among the patient advocates making a splash was Regina Holliday, a Maryland-based artist, who has created a “Walking Gallery” of painted suit jackets to highlight the need for better communication with patients. Holliday distributes jackets for speakers and others to wear at medical conferences. Holiday’s husband died from cancer and her experience with the medical system inspired her to advocate for change. You can read more about her story on her blog, http://reginaholliday.blogspot.com/. Visit my Storify to see a sampling of the jackets.

 

 

Many high profile speakers at the meeting, including Farzad Mostashari, the former US National Coordinator of Health information, sported the jackets. Mostashari acknowledged in one of his talks that it is not just patients struggling to break their data out of the healthcare system. Physicians who want to use patient data for prevention and to improve care are finding that many electronic health records can’t extract the information they need.

 

While there are still major technical challenges and cultural barriers to true patient engagement in health care, it was clear at the meeting that the healthcare industry has gotten the message Holliday and other advocates are sending. Physicians and health systems are experimenting with how to engage patients through social media, patient portals, and shared decision-making. And some, like Massachusetts General Hospital, have found that technology such as shared decision-making tools and personalized, illustrated consent forms can spark meaningful conversations between physicians and patients about the risks and benefits of various care options.

 

Having worked in healthcare long enough to remember the days when social media and other online tools were greeted with fear and skepticism, I’d argue that these are big steps forward that will likely lead to better conversations and more empowered patients going forward.

 

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