Sunday, December 05, 2010

Patient advocates band together

#IHI Back in July, I wrote about a new effort by IHI to help patient advocacy organizations. The summary:

Here's how it will get started. IHI wants to invite 35 to 50 patient advocates to its Annual Forum this December in Orlando, FL. The invitees will attend a special session at the beginning of the conference, and then they will attend the entire Forum as the week progresses. Their conference fee and travel expenses will be completely borne by IHI.

Our hope is to provide these folks with a terrific educational experience, but also use this first get-together as an organizational session for a "trade association" of patient advocacy groups. With planning and luck, we think we will be able to build an organization that will provide technical, educational, and marketing support to these small non-profits.

Well, thanks to the generosity of a number of hospitals and others, the group assembled today for the first time in a "Leadership Summit for Patient Activists and Partners in Quality and Safety." I have dropped by for part of the session. On the right, you see Dr. Steve Pratt, from BIDMC, who worked with Linda Kenney from MITSS, on the concept for this session. He is accompanied in this picture by Dale Ann Micalizzi.

The meeting started with a "tweet" from each attendee, telling their personal story that led to their current patient activities. Among them was Helen Haskell, Director of the Empowered Patient Coalition and Mothers Against Medical Error, seen here (right) with IHI's Madge Kaplan (left).

The person in the picture at the top of this post, Regina Holliday, is a medical advocate muralist. She is using paint and brushes to promote health reform and patient's rights. She was on hand to memorialize today's session.


Anonymous said...

I am coming to believe that patients must aggregate, as here, and learn how to 'play the game' as a large team, to exert pressure for improvement. Coordinated leadership from physicians is not on the horizon, and the other players all have their own agendas. (Present company excepted of course).

nonlocal MD

Ken Farbstein said...

Thank you, Paul, for gathering supporters to finance us to come to the Leadership Summit at the IHI Forum. As a colleague said, it was our Woodstock -an intense, warmly collegial, heartening and heart-rending once-in-a-lifetime experience.

We 50+ pariahs - shunned victims of medical errors - discovered our community there. At a large breakfast meeting on the final day of the Forum, we discussed our fervent hopes to partner with IHI, Cautious Patient, and other organizations over the long term. The partnership described in a Forum session by Dr. Danny Sands of BIDMC and e-patient Dave deBronkart offers a compelling model of such an equal collaboration. At the breakfast meeting, the activists chose Helen Haskell, photographed above, and me as Co-Facilitators. We're deeply honored, and I hope we prove worthy of that role.

Thank you again!

Trisha Torrey said...


For too long, patients have been the invisible stakeholders in medical care. As the IHI instigator who began pulling us together, you've given us patients the opportunity to begin shedding our invisibility. For that, and much more that you do, I thank you.

Trisha Torrey
Every Patient's Advocate

Ken Farbstein said...

As a ripple effect of the Leadership Summit, 42 of our advocates/activists participated in a Reunion conference call exactly a month after the final day of the IHI Forum. About two-thirds of the group reported on their progress since the Forum; their "headlines" are available to the Leadership Summit participants at the wiki we've set up to share information.

Thanks again, Paul, for your indispensable role in convening us!