“It’s easy to find a lot of decent quality info online if you’re looking for something common or general.  But once you get to a specific context or situation, or a rare disease, then most of what you find online is really superficial.”

Roni Zeiger MD is a physician who thinks that doctors have a lot to learn from their patients.  As the former Chief Health Strategist at Google, Roni spent a great deal of time thinking about how people search for medical information online.  He began to notice that “it’s easy to find a lot of decent quality info online if you’re looking for something common or general.  But once you get to a specific context or situation, or a rare disease, then most of what you find online is really superficial.”

Further, says Roni, we shouldn’t assume that doctors necessarily have all the answers.  He notes that when patients are diagnosed with a disease, they and their loved ones can quickly become more knowledgeable than their doctors with regard to their own particular situations.  When Roni looked at online medical message boards, he discovered high-caliber, scientifically informed discussions.  However, all of this expertise was not accessible to web searches, meaning that it was not benefiting as many people as it could.

The genesis of Smart Patients

The existence of this untapped treasure trove is what motivated Roni to partner with Gilles Frydman to start Smart Patients, an easy-to-use community platform focused on oncology and health.  This site allows patients and caregivers to connect and learn from one another’s experience and knowledge in a question-and-answer format.  Roni remarks that complicated health situations are unique – each person’s exact combination of conditions, symptoms, and life circumstances is unprecedented in medical history.  Therefore, the best advice often comes from a network of microexperts - a group of people, each of whom has deep knowledge of one aspect of a certain condition.  When people on Smart Patients ask tough questions, they benefit from a multitude of opinions and perspectives, including those from different disease backgrounds, as is evident in the screenshot below.

 

Smart Patients earns the trust of users by implementing sophisticated safeguards for privacy and users’ data.  None of the site’s content is publicly accessible, and the site is monitored to ensure that only patients and caregivers – not researchers or industry representatives – can make accounts.  Further, the site promotes a culture of respect, so the communities are self-monitoring against misinformation or rude remarks.

User centered design

Roni believes that the healthcare system is failing to incorporate user-centered design. Smart Patients has begun to work with academics and researchers, generating insights from relevant communities to improve the design of clinical trials.  Roni hopes that this will lead to clinical trials that are more user-friendly and accessible.

Smart Patients aims to challenge the top-down paradigm of traditional medicine, helping professionals learn from patients’ stories and experiences to improve healthcare as a whole.  As an indication of Smart Patients’ early success, representatives of other diseases have asked to incorporate the Smart Patients platform into their own patient communities.

I can see ways that the autoimmune community could benefit from using this platform.  What do you think?

First posted on Dr Bonnie 360 on 6/27/2014.   Republished on TDWI with permission of the author.