e-Patient Dave

Power to the Patient!

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Opening remarks at annual fundraiser for MITSS (Medically Induced Trauma Support Services)

A wonderful, little-known, but very valuable resource for improving health care is MITSS – Medically Induced Trauma Support Services. (They pronounce it “mitts” and it has nothing to do with MIT.) I’ve written about them several times on e-patients.net and on my own “New Life” blog; a good introductory post is here. They support everyone involved in medical errors – the professionals as well as the patient/victims.

They invited me to give the opening remarks at their annual fundraiser last month. (More about them below.) It was a privilege. Here’s my talk. The slides aren’t in the video, but if you’ve seen the other talks on this site, you’ve seen most of the slides.

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Abington Memorial already *has* a shared care plan

In How Patient-Provider Engagement Can Transform Patient Safety I proposed a shared care plan, which the patient and family would be able to read. I just learned that Abington Memorial Hospital, outside Philadelphia, already offers a daily one. Click the image to see a PDF.

They have many anecdotes of medical errors that were avoided because the patient and family could see the plan, point out allergies, note things that didn’t get done during the day, etc.

How did they do this? Custom programming? Yes and no: it’s a report they created on their Eclipsys medical record system.

Wonderful! This is one example of the great potential of health IT, to leverage information for better care. Let patients help.

Hospitals, can you do the same? The people at Abington are happy to share.

Read Abington’s press release about the “CARE Plan” (Communication, Access to info, Resources & Education), for which they won a 2008 Magnet Prize.

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A radical view of “compliance/adherence” – from 1977

Sunday I wrote about a landmark paper, “Healthcare in a Land Called PeoplePower: Nothing About Me Without Me.” Here’s the next in this series. It starts:

“Physicians often complain that patients are non-compliant; they do not do what they are told. This resistance perplexes doctors. They can write prescriptions for patients, but they cannot control what the patients do with the prescriptions. … To cajole or threaten has little effect. Rapport and education have likewise had little impact. Patients continue to disobey.

The paper is “The Patient’s Right to Decide,” by Warner Slack MD. It was published in the British journal Lancet – in 1977.*

He continues: [Read more…]

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“Healthcare in a Land Called PeoplePower”: a landmark paper from 2001

The first in a series about past papers that I think are important as we create the future of healthcare.

I’m preparing to participate next month in a seminar on shared decision making (SDM). SDM is the general issue of patients sharing actively in decisions about their care, as opposed to physicians and hospitals making the decision without asking.

The seminar’s full title is “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” The first phrase alludes to an expression made famous by Charlie Safran MD, of Beth Israel Deaconess, when he testified in 2004 to the House Ways & Means Committee’s subcommittee on health: “the most under-utilized resource in our information systems – the patient.” I recently learned it was first said years earlier by his colleague Warner Slack MD. Both of them were early mentors to Dr. Danny Sands, my primary physician.

Bluntly, these guys have been working for decades on empowering and enabling patients to be engaged in their care, and it’s a thrill to be connecting with them and moving the ball forward. I’ve met with all of them this year, and they shared copies of some of their writings. This is the first: “Healthcare in a Land Called PeoplePower: nothing about me without me.”
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How Patient-Provider Engagement Can Transform Patient Safety (new article in PSQH)

I’m honored to be the author of a new article in Patient Safety and Quality Healthcare magazine (PSQH): “How Patient-Provider Engagement Can Transform Patient Safety.”

It’s a companion to a Special Interest Keynote titled “How Patient/Provider Engagement Can Transform Healthcare,” which my primary physician Dr. Danny Sands and I will deliver December 7 at the Institute for Healthcare Improvement (IHI) Forum in Orlando. It’s my cancer story as seen from our two perspectives, as physician and patient, in the age of the internet.

Earlier versions of the talk have been titled “Illness in the Age of ‘e’,” but this event calls for a change – because participatory medicine is now a full-blown movement, with its own medical society, with its Journal of Participatory Medicine as well as the e-patient blog. Plus, significantly, patient and family engagement is now part of Federal policy – it’s one of the “meaningful use” requirements for providers to earn financial incentives in the coming years.

Clearly, the age of participatory medicine – of patient/provider engagement – has arrived.

An early ally of the movement was Susan Carr, editor of PSQH. The patient safety movement clearly sees the value of patients and families being actively engaged in all aspects of care, so we talked this summer about how we really ought to do something together. Then we realized, the subject of our IHI keynote applies perfectly to patient safety, an important part of healthcare.
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Patient & Family Engagement for post-traumatic stress and traumatic brain injury, especially military families

I spoke this morning at an event outside Boston hosted by NAMI NH, the New Hampshire organization of the National Alliance for Mental Illness. The subject was “Best Practices in Mental Health, Prevention and Wellness for Military and their Families,” and to be blunt, a major issue is suicide prevention among veterans.

This video cites that in 2009, more veterans killed themselves than all the active duty soldiers who died in Iraq and Afghanistan combined – and many vets with war-related mental problems aren’t getting any services. Whatever your political views may be about the military actions themselves, this is a human tragedy.

I spoke about the patient engagement movement, starting with citing my own father’s service in World War II and my father-in-law’s – he returned not well, and though we can’t diagnose the dead, his lifelong explosive anger sounds like today it might be called PTSD. (I emphasize that we can’t know.)

Below are my slides. I sure wish my voice recorder wasn’t out of batteries – a lot was said that’s not in the slides. At bottom are the URLs for the resources I talked about.

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