Thursday, July 29, 2010

Helping patient-run organizations

This is a request for modest financial help, directed to my hospital colleagues.

In recent years, we have seen a burgeoning of small patient-run organizations. They are working hard to improve the quality, safety, and responsiveness of the health care system. Many of these organizations arose out of personal tragedy or injury, like Linda Kenney's MITSS. A common characteristic is that the founder has been able to get past the trauma and anger of his or her medical experience and has devoted time and effort to education, training, and advocacy.

But many of these organizations are tiny and do not have the financial wherewithall to reach their potential. So a small group of us have decided to try to help, under the auspices of the Institute for Healthcare Improvement.

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.

Here's the pitch. We need about $100,000 to get this up and running, and I am asking hospital CEOs across the country to consider making a contribution of $5 or $10 thousand from their hospitals towards the cause. BIDMC will do its part, and I am hoping that ten or twenty others of you will do the same. This is surely a good way to demonstrate our commitment to patient-run organizations.

If you are interested in joining in, please contact Sara Kolovitz at skolovitz [at] smithbucklin [dot] com. Thanks for considering this.


Christine said...

How will the 35-50 patient advocates be selected if your efforts to raise money are successful?
I think this is a great idea. I am working in the area of maternal care safety and quality and know many folks who would like to be an advocate but haven't started their own organization. I don't think it's such a great idea to have so many individual organizations either. Is the idea to have some umbrella group within IHI for folks who don't start their own organization? Thanks for your efforts.

Anonymous said...

IHI is making up the list. Please contact Sara if you have suggestions.

On your other question, things are fluid right now. We will be seeking the advice of the people attending. I doubt people would want to give up independence and have that strong an umbrella group, but we are guessing that many would welcome some kind of support organization. Let's see what develops!

Jeni said...

From Facebook:

Many thanks to you for this post.

Louise said...

I have been reading your blog and am sending you an article written by Ted Ball called Disruptive Innovation: Patient/Family-focused Care. He writes about how challenging it is to change the current culture in healthcare and how the drive must come from patients and families. I think that this can only happen if we let patients/families into our "private club" and thus I find IHI's idea to involve them in its Annual Forum is brilliant.

Please feel free to share with your readers.


Louise Fullerton RN MSc(A)
Clinical Nurse Specialist - Critical Care
McGill University Health Centre

e-Patient Dave said...

I'm gob-smacked. Completely floored. Wonderful.

And here's the next challenge for you wonderful people - and I mean it, think about this: what about the lost pay these people sacrifice from their day jobs in order to attend?

In my Why America needs a patient-in-chief post, I said "It’s doubly ironic because the most motivated patients, the ones with the most at stake (and most educated), are most likely to have financial stress – thus least likely to be able to “take a few days off” to go help in DC."

Again, this is a wonderful initiative. And I urge all the wonderful supporters to kick it up a notch and make it actually work for the patients to come... by fully understanding how affected their lives are by the challenge of participating in change.

Thanks again. This is starting to get really patient-centered.

e-Patient Dave said...

btw, a year before "patient in chief" I proposed a patients speakers bureau, so conference organizers have somewhere to turn.

It would need to have the usual bureau features: ensuring quality, understanding each speaker's unique "schtick," etc. Perhaps that's something an umbrella organization could provide.

(I looked for an existing speaker's bureau on the IHI site and didn't see one.)