Grand Rounds Volume 6, Number 4

When I chose the theme for this week's Grand Rounds, I chose it because it is near and dear to my heart. Before I knew what it was called, I was looking for a "participatory medicine" model. Long before I heard the term "ePatient", I was one.

Since the Society for Participatory Medicine is the next evolution of the group at http://e-patients.net/, it makes sense to start by having them spell it out. Their new Journal of Participatory Medicine is launching next week at Connected Health, and Co-Editors-In-Chief (a physician and a patient, of course) explain the purpose clearly on the Society's blog, in Why the Journal of Participatory Medicine?

If you still aren't certain what an ePatient is, in The e-patient white paper: Seven Preliminary Conclusions, Dave deBronkart (better known as ePatient Dave) points out ePatients are not "anti-doctor" or "anti-medicine". Rather, they "use the internet...to access content, connect with others, and collaborate with others in ways never possible before."

John Sharp of the Cleveland Clinic wrote a guest-post called Journal of Participatory Medicine and e-Patients .

If you have not read the e-Patient White Paper, you do not understand the future of medicine...Being an e-Patient is beyond being empowered. The subtitle of the paper, “How they can help us heal healthcare,” describes the potential for a revolution of change....

In Participatory Medicine: Text of my speech at the Connected Health symposium, Susannah Fox of the Pew Research Center’s Internet & American Life Project hits the nail on the head in her response to this:

In December 2001 the American Medical Association put out a press release suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”

Recently, Susannah presented the latest data on social media and health care with Social Media's Promise for Public Health . If you want some eye-opening data, check out the slide show on this one. (Did you know 79% of adults use the Internet, up from 46% in 2000?)

"I asked doctors for three years - PCP, gynecologist, neurologist, podiatrist - all said the now-famous refrain. It's too rare", says Mary O'Connor in her Participatory Medicine post. Her riveting story exemplifies the move from patient to ePatient and the need for participatory medicine.

A thousand kudos to blogger Brian Ahier for showing us this wonderful Seinfeld clip in which Elaine has the chutzpah to look at her folder in the doctor's office.




Of all the submissions, Brian's is the only one to point out that October is Patient-Centered Care Awareness month. His October 1 post, Patient at the Center, mentions the principle "Access to understandable health information can empower individuals to participate in their health care" and contrasts that with the words of Hippocrates and Oliver Wendell Holmes that discouraged physicians from letting patients know what's going on. It makes one wonder if the physicians Elaine visited were trained by Holmes.

Amy Romano, a nurse-midwife and advocate for mother-friendly maternity care illustrates the need for patients to "become empowered, engaged, equipped, and enabled...before they face life threatening illnesses or need to manage chronic conditions" in A Lifetime of Participatory Medicine Can Start With Maternity Care. She originally posted a version of this at her own blog, Science and Sensibility.

How does one become an ePatient? An empowered, engaged, equipped, and enabled patient? Trisha Torrey gives some great guidelines in her article Tools for the Savvy Patient. This is what PM should look like to a patient who has never heard of it. She includes clear, simple, sensible advice on how to play an active role and have good communication with one's practitioners.

Speaking of good communication, Dr. Rob Lamberts practices participatory medicine every day with his patients. In this post he identifies with his patients and their Anxiety. He talks about how he works with his patients honestly and openly to deal with this and other life issues.

Charles Smith MD, co-editor of the JPM, tells a story of a specialist who responded to a patient's request by looking, not ignoring, and found a new medical association he'd never known. He talks about how doctors can learn from patients:

"...patient outcomes will be improved if we encourage them to ask questions,
and to enlighten us when they come across something that may be relevant.
...Equally important, it is critical for providers to remain open to being guided and educated by our patients."

Chris, of the Man-Nurse Diaries, wrote to me "As a nursing student, I find the idea of participatory medicine akin to the idea of patient advocacy, and I think both ideas need to be spread to patients/individuals and their families." He talks about how this works in his post Participatory Medicine.

Barbara Olson at Florence dot com goes even further. She says, "Since we're all seated at the grown-ups' table, let's get this on it: Healthcare providers are fallible humans. It's not 'if' we make mistakes, it's when." She takes participatory medicine a step further with thoughts about how patient safety can be made better by participatory processes in Participatory Safety.

Society president Alan Greene, MD of DrGreene.com likes to quote Thomas Jefferson, citing Jefferson's view that "When the people are well-informed, they can be trusted to govern themselves." He talks about how at one time this didn't apply to women or slaves, and how it still does not to patients. A provocative Glimpse of American Healthcare of the Future , this reminds us of the premise on which our nation was founded.

Heathcare is not something done ‘to’ us or ‘for’ us. Health is something we
foster ‘with’ our family, our friends, our community, and with other people
dedicated to fostering health.

Hugo Campos, in his post My Journey from Patient to Consumer of Health Care, echoes this sentiment. At risk for sudden cardiac death (SCD), he was misdiagnosed at least 3 times before he became an ePatient and started advocating for himself and then for others.

David Harlow at his Health Care Law Blog, Healthblawg, has some wise advice for providers. His post A Declaration of Health Data Rights: Can't argue with it, but it's only a first step includes a proposal for participatory-medicine-minded providers. Announced less than four months ago, the Declaration of Health Data Rights has over 1200 endorsements by individuals and organizations. Can you say "handwriting on the wall"? We sure have a long way to go, though, and we all must work together to make this happen.

Speaking of health data rights, no discussion of participatory data sharing would be complete without a mention of e-Patient Dave's earnest attempt to move his PHR data from his hospital to Google Health last March. The mess that resulted (and his articulate post about it) had unforeseen effects. It landed him on the front page of the Boston Globe, brought him to Washington for policy meetings, and led to his delivering the opening keynote, "Gimme My Damn Data," at last month's Medicine 2.0 Congress in Toronto. Data sharing is a vital part of participatory medicine, but again, we have a long way to go.

A key factor in PM is the altered relationship - not just providers "letting patients in"- but the shift in responsibility. As every physician knows, the physician may advise, but then the patient does or does not take the advice. This issue was discussed in a trilogy of posts:

• "Physicians are Coaches, Patients are Players" (quoting Stanley Feld MD)
• Sequel: "Embrace Knowledge Symmetry"
• "The Ideal Doctor/Patient Relationship" (ICSI President Kent Bottles)

The Health 2.0 conference in San Francisco last week was covered by an empowered patient, Amy Tenderich of the Diabetes Mine blog. In “Health 2.0″ - The Buzzword You Hate to Love she gives her patient's view coverage. In her post she says, "...in this entire national dialogue about healthcare reform, there’s simply not enough patient representation!" I agree, Amy!

Another patient, Lauren, talks about how tough it is to be My Own Advocate as she deals with multiple autoimmune diseases. She highlights the conundrum with ill patients who need to advocate for themselves and yet are too sick to do that.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

And last, but not least, Dr. Charles will close this edition for us with Watching my Grandfather Watching the Sky. Although not exactly on topic, it still fits as it explores the melancholy satisfaction a physician feels at the end of the day, and the heroism of patients dealing with life's struggles.

And as an addendum: While researching this issue of Grand Rounds, I came across this incredibly moving post. It doesn't address participatory medicine but it does a powerful job of reminding us all of why we care: lives are at stake, and when healthcare fails, there are real human consequences. Please read artist Regina Holliday's detailed description of the symbolism and meaning embedded in her now-famous mural of her husband Fred's death last June

Thank you for reading this edition, and be sure to catch next week's edition at Sharp Brains.

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