*I could have also titled this post, “Happy Mothers’ Day: OBOS — The Mother of All e-Patients.”

For Mother’s Day, at the request of my own mother (Ruth Kertzer Seidman), I made a donation to Our Bodies, Ourselves (OBOS). My mom has often asked that we make contributions in her honor for special occasions, and made a special plea this year — as many non-profits doing great work are struggling during this deep recession.

I was thinking about OBOS in the context of so many discussions in recent weeks about the nature of the e-patients movement (see related posts here, here, and here). It would be hard to overstate the groundbreaking work of OBOS (previously known as the Boston Women’s Health Book Collective, BWHBC) in the role of consumer empowerment and user-generated content.

Nearly 40 years ago, in an era when women were doubly patronized — as patients and as women — by their doctors, BWHBC decided to take matters into their own hands and create materials to empower women to take control of their own bodies and manage their own health. BWHBC founders were not doctors and most had none/limited health sciences training.

(Full disclosure about my connection to BWHBC: My aunt, Esther Rome (NY Times obituary here), was one of the BWHBC founders and remained an active part of BWHBC until she died of breast cancer at age 49 in 1995, having courageously battled the disease for 7 years that also struck her mother at a young age. Esther was determined to be present for her younger son’s bar mitzvah before passing away a month later. My mother — a lifelong feminist with exceptional management skills (and information scientist, but that’s another matter) — chaired the BWHBC Board of Directors 1999-2001. I can remember attending BWHBC 10th (as a pre-teen) and 20th (as a college student) anniversary parties, and I don’t remember a time when versions of OBOS and spin-off BWHBC books were not on the lower bookshelves of the house in which I grew up. In other words, feminism and consumer health empowerment were ingrained in me since somewhere between diapers and kindergarten.)

The result was phenomenal: OBOS has sold more than 4 million copies and it has been translated into 19 different languages. It was arguably the most profound demonstration of consumer empowerment and user-generated content at the time and was instrumental in changing the dynamics of the doctor-patient relationship, particular for female consumers.

Recent discussions with today’s most passionate e-patients often involve a discussion of how important e-patient communities are for people with rare health conditions (”the long tail”). There’s no doubt that’s been true in many cases — for those people with unusual health challenges, these social networks have been poweful, invaluable and (in many cases) life-saving.

But OBOS wasn’t about the long tail. Quite the contrary. It was about the day-to-day health and quality-of-life issues that women face, such as a patient-centered approach to pregnancy & childbirth, breastfeeding, healthy eating, sexuality & sexual health, mental health, domestic violence, menopause, etc. For women (and men who care about women), there’s not much further from from the long tail than these issues.

By the time my generation was coming of age, OBOS was almost like a bible for women on college campuses and elsewhere (in fact, the NYT obit of Esther Rome referenced above called it a “bible to a generation of young women”). As it took on that status, it also faced some new criticism. In OBOS’s early years, critiques primarily were lobbed from the entrenched powers that be (particularly of a paternalistic OB/GYN medical community). A couple of decades later, some of the criticism came from Gen-X & Gen-Y feminists (and even some older) who perhaps had a different view on what “empowerment” really means. Most notably, whereas the original e-patients (rightfully) were highly skeptical of the medical industrial complex, some feminists of the next generation wanted to balance that skepticism with a more open approach to the potential of modern medicine to help them deal with their personal health issues.

But OBOS undoubtedly has done so much more good than harm. And it certainly lay the groundwork that can come from the empowerment of medically disenfranchised consumers.

I think its evolution also may provide lessons for how the modern e-patients movement evolves. In many ways, a corollary may be how many in the e-patients community (who have saved countless patients’ lives primarily through consumer sharing of information) are now leading the charge toward the critically important concept of “participatory medicine.”

To my mom and all mothers around the world: Happy Mother’s Day! I wish you all a life of good health and health empowerment.

This entry was posted on Sunday, May 10th, 2009 at 7:05 am and is filed under Consumer empowerment, Participatory Medicine, The New Health Care Consumer. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.