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August 16, 2013 By e-Patient Dave 5 Comments

Partnering WITH Patients: the IOM gets it right! (And I have a suggestion.)

IOM logoI often compare the “listen to patients” movement to other social movements from my delightfully long life. :-) One of the folk songs of my adolescent years was Bob Dylan’s “The times, they are a-changin’.”

And so they are.

Last fall the Institute of Medicine – the pinnacle of academic medicine – published a major report, Best Care at Lower Cost, which I’ve mentioned here repeatedly. Assembled by an absolutely blue-ribbon team, it has many quotable items, but my favorites is this: (Page S-11, page 34 of the PDF)

Patients Included badgePatient-Clinician Partnerships

Engaged, empowered patients – a learning health care system is anchored in patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

Read that carefully. A lot of people who work in medicine don’t yet know about this report, and many who do haven’t yet had it sink in. A perfect example is Medicare, with their well-meaning paternalistic project “Partnership for Patients.” Note: it’s a partnership for patients, which is not something you’d say if you thought of patients as someone who’s on your team.

Well, in February I was invited to attend (as a participating audience member) a really good workshop at the Institute of Medicine, putting their money where their mouth is – they sponsored several patients to be in the audience (including me), in addition to having speeches by excellent patients like Kelly Young of RAWarrior. Plus, the event was moderated by Christine Bechtel of the National Partnership for Women and Families, whose work as advocates for the patient view I’ve lauded, including the acknowledgements of my book Let Patients Help.

And what did they call the workshop?

PartneringWith Patients
to Drive Shared Decisions, Better Value,
and Care Improvement

Hooray for the IOM!

Yesterday they released this good, concise video about the day. I think somewhere in there is a glimpse of the back of my head, but there’s plenty of footage of numerous patients and advocates who were there as speakers and other voices in the audience. (I spoke up several times during Q&A, believe me!)  (If you can’t see the video, click here.)

The event’s website, with the full proceedings and discussion, is here.

And for your next assignment, IOM …

… how about electing some patient voices to membership in the IOM?

I browsed the member directory and as far as I could tell, there are zero patients as full members of the Institute. (Some are in the directory so they can be contacted by members, but doesn’t that seem a bit outdated, like Medicare?)

In fact, I seem to recall some authoritative report saying “a learning health care system … promotes the inclusion of patients, families, and other caregivers as vital members.” Can you do that? Or is there still a vestige of thinking that the institution of medicine should still be guided by people who partner for patients? :-)

Just sayin’. :-)

Filed Under: Events, Government, Participatory Medicine 5 Comments

Comments

  1. bev M.D. says

    August 16, 2013 at 4:57 pm

    Dave;

    I can think of 1000 ‘harrumph’ replies that come to mind of anyone with an M.D., but the bottom line is – you’re right. Let’s have them do it.

    Reply
  2. kgapo says

    August 17, 2013 at 2:23 am

    Well said Dave! it seems the voices about patient inclusion raise at the same time on both sides of the pond! Goes in tandem with Lucien’s Patients not Included (http://blogs.bmj.com/bmj/2013/08/16/lucien-engelen-patients-not-included/)

    Reply

Trackbacks

  1. Speaker Academy #17: “Your message did not fall on deaf ears.” « e-Patient Dave says:
    March 27, 2014 at 8:01 am

    […] patient voices are a cornerstone of the future of medicine (as the Institute of Medicine says), they need to be actively supported in their participation. Otherwise, the future will be built on […]

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  2. NEHI Patient Engagement Fellowship « e-Patient Dave says:
    January 26, 2015 at 9:00 am

    […] about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with […]

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  3. Proposing a new *science* of patient engagement « e-Patient Dave says:
    March 3, 2015 at 7:01 pm

    […] patient blogs into the History of Medicine division at the NLM. The Institute of Medicine in 2012 said that the future of healthcare … requires “patient/clinician partnerships.” And they […]

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