ABC News Interviews Dr. Val About The ePatient Revolution
The Internet has revolutionized how we receive information - and it’s also changing how we learn about and manage our health. A new “ePatient” movement promises to empower patients with online and mobile tools - making it easier than ever to contact a physician, track health variables, and join a support group.
Four minutes isn’t much time to summarize an entire movement, and I think I got a little off topic while suggesting a new use case for David Hale’s NIH PillBox (a pill identifier tool). I said it could be used to identify pills even after your pet licked part of the label off them!
For more information about ePatients, check out my earlier blog post.
Great interview, Val. Good job!
You missed the origin of the e-Patient concept and movement in the work of the late Dr. Tom Ferguson (see http://e-patients.net), which has led to the founding of the Society for Participatory Medicine (http://participatorymedicine.org) and the launch (last week) of the Journal of Participatory Medicine (http://jopm.org).
I know, Jon - it’s sad that we couldn’t discuss the origins. I did mention the JPM in my last post though. The ABC audience wanted some immediate tips about how to use the Internet to their benefit. In the 3+ minutes I had, I could only suggest 3 helpful websites. Thank goodness we have blogs and journals to further these short conversations. I think mainstream media is a success if it teases folks into additional dialog.
Hi, Val – good to see you at this Fall’s conferences. Thanks for spreading the Participatory Medicine meme!
The answer to the reporter’s question “What is an e-patient? Where did that come from, and what does it mean?” is that Tom Ferguson MD foresaw in the 1990s that the internet would alter patients’ ability to participate in their care. He died in 2006, but his study group at e-patients.net has continued Tom’s work. He came up with the term “e-patient,” saying they were “Empowered, Engaged [in their care], Equipped and Enabled.” Lately people have been adding Educated.
The white paper on the doctor’s e-patients.net site, published after his death, cites seven preliminary conclusions from more than a decade of research:
1. e-patients have become valuable contributors, and providers should recognize them as such.
2. The art of empowering patients is trickier than we thought. … We now know that empowering patients requires a change in their level of engagement. [Hence the "engaged"]
3. We have underestimated patients’ ability to provide useful online resources.
4. We have overestimated the hazards of imperfect online health information. [A multi-year study failed to find a single case of "death by googling," while the Institute of Medicine's famous report documents at least 50,000 deaths a year from errors by professionals. Conclusion: it's arguably more dangerous NOT to educate oneself.]
5. Whenever possible, healthcare should take place on the patient’s turf.
6. Clinicians can no longer go it alone.
7. The most effective way to improve healthcare is to make it more collaborative.
As someone whose life was saved by great medicine, I emphasize #7: this is about collaboration, partnership. It continues empowering precedents such as Dr. Benjamin Spock’s Baby Book (opening words: “Trust yourself. You know more than you think you do”) and the truly extraordinary women’s health book “Our Bodies, Ourselves,” which is now helping the granddaughters of its first readers.
Ferguson’s work lives on today in the Society for Participatory Medicine and its new Journal of Participatory Medicine, jopm.org. You should get submit an article!
As someone who came along after Ferguson’s death, I think it’s important to honor his vision. Thanks for helping to spread the word.
“e-Patient Dave” deBronkart,
Blog curator, http://e-patients.net;
Co-Chair, Society for Participatory Medicine
Thank you, Dave, for taking the time to further explain the ePatient movement here on this post. It certainly seems that the purpose of short TV segments is to encourage people to read more - one can never tell the full story on the news. I hope that more people see your comment than my ABC segment.
However you managed to land that interview, GOOD WORK! Nobody in TVland has ever approached me, and you have the chops & charm to pull it off. Smooooth.
Thanks, Dave! I know the short segments are always a let down in terms of volume and depth. Sound bites are not enough… but that’s why we have blogs and journals of participatory medicine! Thanks for understanding the limitations and being an active participant in my world.