I’m an old hippie [left]. I’ve lived in many houses and on a farm (commune?) with other people. Regularly we heard, “I agreed to what? No I didn’t.” “Since when is that a rule?”
I, and then my wife and I, developed skill in clarifying expectations and accountabilities: much effort invested to reach consensus, always worth it.
Later, in my work life as a healthcare leader, I tried to use service agreements between departments to clarify expectations and accountabilities. It was often resented and seldom reciprocated.
Now, as a person with growing and seemingly unmanageable pro bono participation in volunteer and not-for-profit organizations, I try to do the same.
Please cite this post as “by Dave deBronkart, Marilyn Mann and Peter Elias MD” or, on Twitter, “@ePatientDave, @MarilynMann & @PHEski.” Our blog software only allows listing one author but they provided 2/3 of the content.
The medical news is abuzz – and your newspapers will be abuzz – with coverage of a study released Friday. Understanding it properly requires several things that we’ve blogged about here in the past, not least of which is understanding statistics, especially these key points:
- Avoid relative risk reduction (headlines about percentages)
- Look instead for actual (absolute) numbers of patients helped
- Figure out the NNT – the number needed to treat. It’s the number savvy people look for.
I’m not involved in cardiac issues, so I first heard about it on ABC’s evening news, where, sure as you’re born, all they talked about was relative risk: “lowers the risk of heart attack, stroke, etc by 15-20%.” That’s good news, of course, but you can’t tell how good it is unless they dish up the absolute numbers. (For example, a study of 1000 patients on a new drug could show a 20% reduction in relative risk from 5 to 4 patients or from 50 to 40. Both are 20% reductions, but there’s a tenfold difference in how many were helped!)
The graphic above is from the company’s press release. Surprise: relative risk! What if that’s all a news outlet reads? Will their coverage be what you need? (Plus, some news outlets also post the company’s press release as is, like this. Consumer beware!)
March 1, 1992.
25 years ago.
Yesterday I asked When was “Enriching the relationship by inviting the patient perspective” published? The words in that paper’s abstract [right] could have been written today – literally every word. It was printworthy a quarter century ago Wednesday, and it still is today.
Why? It’s appeared here repeatedly: despite the scientific nature of medicine, facts don’t change practice. Something else is needed. And that’s a problem.
You see, participatory medicine is, above all else, a cultural movement, even more than a medical movement. We’re here as an activist organization, committed not just to talking about change but to creating it. So when facts are presented so healthcare could improve, and it doesn’t – the world doesn’t budge – it may be fine to consultants (they can sell reports about the lack of change), but to us it’s not.
Do not go look this up. I’ll post the answer tomorrow.
We on this blog know Dr. Tom Delbanco as, among other things, the “father” of OpenNotes, along with “co-parent” Jan Walker, RN MBA. (For a history lesson, Tom’s also the lead author on the wonderful 2001 paper “Healthcare in a Land Called PeoplePower,” which I wrote about on my personal blog)
Your quiz: (Do not go look this up – THINK!)
When did he publish
the article whose
summary is shown here?
I’ll post the answer tomorrow, with the original paper. Please do think about this before searching.
Here’s the summary at right, broken into paragraphs to help you savor them. When was this written?
Doctors and patients alike are saddened and angered by the distance that increasingly interferes with their interactions.
Two complementary strategies may enhance the human quality of clinical care and improve outcomes.
First, the doctor and patient can undertake a systematic “patient’s review” that addresses seven dimensions of care:
- respect for patient’s values, preference, and expressed needs;
- communication and education;
- coordination and integration of care;
- physical comfort;
- emotional support and alleviation of fears and anxieties;
- involvement of family and friends; and
- continuity and transition.
[Pretty good list of aspirations, yes?]
Second, using survey instruments designed to solicit focused reports from patients that address each dimension of care, doctors can gather aggregate feedback about their practices.
Such reports move beyond anecdote and can serve as screening tests that uncover areas in doctors’ practices that merit improvement.
In addition, patients can join doctors in developing solutions to problems uncovered by patients’ reports.
–See you tomorrow …
In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” I was drawn into discussions about the transformation of healthcare by the late Dr. Tom Ferguson, whom I met at a 1980s meeting of the Austin Writer’s League, where he was presenting about his publication, Medical Self-Care.
Tom was a physician, with degrees in Creative Writing, and medical editor of CoEvolution Quarterly, a descendant of the Whole Earth Review and the one periodical I read cover to cover.
The next time Tom and I met, around 1992, I was an early evangelist for the Internet, and forward-thinking Tom could see how access to the global network could empower patients to be more actively involved in their own treatment, and in the cultivation of knowledge about diverse health conditions.
This is a post by SPM Board Member John Hoben – Business Development Director at Bio-Optronics. Hoben’s passion is reconfiguring medical industrial complex assets and transactions from sickness response to true preventive delivery. This entails focusing on realizing improved health status for populations through unique, individualized approaches.
A funny thing happened on my recent annual primary care physician visit. After selecting a pharmacogenomics (PGx) testing service last year (see The Participatory Approach to Personalized Medicine article for background), I printed the results and brought them along to share with my doctor. A student happened to be shadowing my physician that day. When I told them both about my PGx results and shared the summary sheet, they were both refreshingly intrigued to see the results.
Now THIS is what we call #PatientsIncluded. Twenty patient leaders will be fully funded to attend a new “MasterLab Leadership Institute” in the San Francisco bay area March 31-April 2. Click here (or the graphic above) to learn more and apply by next Wednesday, Feb 15.
(They’ve been promoting it for weeks – this post is a late addition.)
Today at 3 pm ET, at the Precision Medicine World Conference #PMWC17 in Silicon Valley, a new open collaboration called Precision Medicine For Me was announced, to help patients and clinicians everywhere make the most of the potential of precision medicine. Our Society for Participatory Medicine is an enthusiastic supporter.
Intro note by e-Patient Dave: What a great development! CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting formal support through a PCORI grant!
I spoke at last year’s event, and as I said in my post about it, “Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care.”
Here’s the start of CCCC’s post about the scholarships – visit their whole post for full details. Congratulations to CCCC and especially to SPM member Liz Salmi for earning this PCORI grant!
The much-quoted line “Patients are the most under-used resource in healthcare” was first uttered in the 1970s by Warner Slack, MD, when he was a young doctor in Madison, Wisconsin. It’s seen many versions and incarnations since then, but it all started with Dr. Slack’s feeling that patients could help a lot by directly entering the basics of their medical history directly into the computer.