In Conversation with the ePatients

Moderated by Amy Tenderich, DiabetesMine

We’ve come a long way with patients but we are still at the periphery. The “patient-central” model is nice, but it’s not real right now. The biggest challenge is having these patient-driven sites becoming more mainstream as an integral part of the health 2.0 system.

Commentary

Trisha Torrey, Every Patient’s Advocate - The tools are good; but they are not done WITH patients. They are done for and to patients, and that’s how all healthcare has been, and we cannot afford to be like that any longer. It should be where the patient is and how the patient can be integrated into the system. Definition of patient empowerment shifts — they’re not asking the right questions to get the right answers. Docs need to become as willing to be engaged as patients; can’t be discrete conversations with patients, practice managers, and docs. Everyone starts playing in the same ballpark…this needs to go into the groups developing these new 2.0 systems.

Jen McCabe, Contagion Health - We’re about three years out with the tools. They may have not chosen to have a healthier behavior. It’s just healthy decision; doesn’t put in what choices I have on a day-to-day level or what’s relevant to me at that time. Unstructured choices will not lead to healthier behaviors. Patient empowerment is defined as “every patient must be engaged.” Not considering patient choices at specific moments — it is a problem. The real thing that happens in the communities is the discussions are actually scary.

Susannah Fox, Pew Internet - Study coming out on the tools and how patients are using these tools. Study shows that people living w/ chronic conditions are using social media and older patients are engaged. Cancer patients more than any others. Unsure how these sites/tools will be integrated into the whole healthcare system.

Gilles Frydman, ACOR - Cancer patients don’t care about tools. They want to know what medication will help them live the longest and what kind of medical care they can get. They want options in surgery, chemo, etc. Health 2.0 is NOT about the technology; it is about the patient.

“ePatient” Dave deBronkart, The New Life of ePatient Dave - “Pushing a dead schoolbus” is the term he uses for pushing the industry forward(??). Put his information into Google’s PHR tool but found lots of problems with the transfer of information. He found that the crummy data submitted by his hospital defined him.

Guidance and satisfaction were the two words that stuck out during the patient 2.0 tools video. Question from the audience about patient loyalty programs from employers; did the incentives work?