Susannah Fox from Peer-to-peer health care is a slow idea that will change the world on susannahfox.com, August 3, 2013
The concept of the empowered patient isn’t a new one – in fact, that characterization has evolved rapidly over the last several years. According to Health Online 2013 (Pew Internet & American Life Project, Susannah Fox) patients have actually advanced their level of empowerment from simple information-seeking to actual diagnosis – acceding to the report, 35% of American adults can now be classified as “Online Diagnosers.”
“As physicians, we have a moral responsibility to weigh in on dangerous inaccuracies in the media … Imagine a simple comment from … each of the American Academy of Pediatrics’ 65,000 pediatricians. We are in a position to own the search engines through our collective participation.”
Bryan Vartabedian, MD from Participating in the conversation: A physician’s responsibility. Baylor College of Medicine Blog, August 7, 2013
We’ve seen a parallel movement among physicians in terms of online activity. Driven by a number of environmental factors. One of the most important is to balance the enormous amount of misinformation and spam online masquerading as health information – because doctors have the knowledge and experience to set the balance right.
These two trends have begun to collide as never before. The best doctors are often the best students – they literally never stop learning and improving. Many of these leading-edge physicians have recognized that one of the greatest sources of learning are patients themselves.
“I do interact with patients online … I like to hear the stories about health issues they’re facing, and to follow their journeys … It helps me to understand what patients expect – or at least hope for – from their doctors.”
Danielle Jones, MD. Danielle Jones, MD – The MDigitalLife Interview. September 21, 2012
We’re now seeing a migration from relatively segregated Patient-Patient and Doctor-Doctor communities to online communities where both mingle freely, sharing and learning together. One of the most fascinating places to map that circumstance is on twitter, where the study of direct conversations between doctors and patients can be visualized to help us understand how those networks function.
[If you have trouble viewing the embedded social network map, you can go directly to http://bit.ly/epatientdoc]
To create the chart below, we looked at the twitter conversations of 89 prominent ePatients and ePatient advocates to see how often they used the twitter handle (e.g., @DrAttai) of one of the more than 14,000 validated US physicians tracked in the MDigitalLife database. We then looked at the tweets from the 297 doctors mentioned by the ePatients, and identified every instance in which one of the ePatients was mentioned.
Using Google Fusion Charts, we were able to visualize those interactions to show the interconnectedness between the ePatients (yellow dots) and physicians (blue dots). Feel free to play around with the chart by dragging network nodes to change its shape, and buy changing the filters to show more or fewer nodes.
While it’s difficult to gain many insights from viewing every single interaction, we found that when we looked only at doctors and patients who had interacted with each other at least 15 times, identifiable clusters began to emerge. A few examples:
- There are clear communities based on therapeutic areas such as breast cancer (@DrAttai), heart health (@HugoOC) and blood cancers (@myelomateacher)
- While there may be fewer online interactions outside the specialty/therapeutic area classification, ePatients and advocates like Dave DeBronkart (@ePatientDave) and Lisa Field (@PracticalWisdom) have a massive number of connections to the physician community, with no apparent focus on specialty
- To a lesser degree, doctors like Bryan Vartabedian (@doctor_v), Howard Luks (@hjluks) have significant connections in the ePatient community that have little to do with their medical specialties (pediatric gastroenterology and orthopedic surgery respectively)
While it’s premature to assume that we fully understand the nature of those interactions, we can generalize in saying that these bellwether patients and doctors get benefit from their interactions in a more “meta” sense – they’re exploring the very nature of the evolving doctor-patient relationship.
I’ll end this post with a quote from one of my co-panelists at this week’s Digital Health Summit:
“Patients often only bring their narratives to the dialogue. If we want to get a proper seat at the table we need to do better than that.”
I’m fortunate to be on a panel at this week’s Digital Health Summit at the Consumer Electronics Show in Las Vegas with leading ePatients Hugo Campos and Donna Cryer; moderated by health technology thought leader Neil Versel If you’re interested, you’ll definitely want to follow along with the #DHCES hashtag on twitter on Wednesday and Thursday, January 8 and 9. Our panel will be at 4:10 PM PST/1:10 PM EST on Wednesday the 8th, and is entitled “Loudmouth Patients: Making Noise and Making Change.”