I’m preparing to participate next month in a seminar on shared decision making, and some homework led me to this government paper, published in July: Equity & Excellence: Liberating the NHS (PDF, 339k). I must not have been paying attention to my UK friends on Twitter this summer, because by US standards of “patient centeredness,” this is pretty mind-blowing. Consider item 2.3, page 13:
We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.
It can also bring significant reductions in cost, as highlighted in the Wanless Report, and in evidence from various programmes to improve the management of long-term conditions. This is equally true of the partnership between patients and clinicians in research, where those institutions with strong participation in clinical trials tend to have better outcomes.
(In the original PDF, each of those statements is linked to a footnote.)
In the UK as in the US, I imagine there are people who don’t entirely agree :–) with this idea. What debate did I miss out on?
- Please see Ted Eytan’s August post about this, which he notes in the comment below. Good perspective (he knows more about the NHS) and excerpts.
- I’m surprised that we’re hearing no hoots of derision from across the pond about this “patient-centered” idea. We sure hear those hoots in the US. Is there no flaw in this document?
It contains some very good ideas, summed up in the phrase “no decision about me, without me”. Policy is moving towards a patient owned PHR also.
Newer to Twitter, so like you, I missed any initial comments. I think tis document contains some very interesting concepts, especially the phrase: no decision about me, without me. It sounds as it should be intuitive in healthcare, but is not always the case.
I also believe that the patient should be the author/owner of his own story (PHR) and healthcare providers can act as editors.
Thanks for this very interesting link
The term “Nothing about me without me” arose, I’m told, from a 1998 seminar at the same place I’m going. It led to a seminal 2001 paper “Healthcare in a Land Called PeoplePower,” authored by Tom Delbanco (a senior leader at my hospital, Boston’s Beth Israel Deaconess), Don Berwick (founder of the Institute for Healthcare Improvement, now head of Medicare/Medicaid), and several others.
I’m told co-author Diane Plamping came up with that pivotal phrase. [Update: see corrections below.]
The original 2001 paper is here. Full text requires
free registrationpayment, but I have a paper copy – it’s a pretty extraordinary vision of participatory medicine, where patients aren’t just involved in treatment decisions, they help run the hospitals(!).
btw, one of the paper’s co-authors, Richard Rockefeller MD, is also listed in our white paper as one of Doc Tom Ferguson’s “e-patient advisors.”
Today Delbanco is one of the people working with Jan Walker, RN, MBA, who’s leading the OpenNotes project, sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio, which is studying what happens when patients can see their physician’s notes.
“Nothing about me, without me” is an expression that came from the disability advocacy movement in South Africa, dating back to 1993.
Diane Plamping may have borrowed the expression but she certainly didn’t invent it.
Thanks, Gilles! You’re right, and this trail leads to quite a few precursors.
Googling leads to this book: Nothing About Us Without Us: Disability Oppression and Empowerment, whose first sentence is indeed: “I first heard the expression ‘Nothing About Us Without Us’ in South Africa in 1993.”
It continues: “Michael Masutha and William Rowland, two leaders of Disabled People South Africa, separately invoked the slogan, which they’d heard used by someone from Eastern Europe at an international disability rights conference.” So I suppose it goes even farther back.
Interestingly, the next paragraph quotes Ed Roberts (“a leading figure of the international disability rights movement”), saying “If we have learned one thing from the civil rights movement in the US, it’s that when someone else speaks for you, you lose.” (Emphasis added.)
It continues: “In this sense, ‘Our Bodies, Ourselves’ and ‘Power to the People’ can be recognized as precedents for “Nothing About Us Without Us.”
Indeed, we here have cited Our Bodies, Ourselves as a pioneer of participatory medicine. And my first blog post about e-patients after reading the white paper, 1/28/2008, said “this looks to me like the Sixties motto ‘power to the people,’ made real in the world.” (Our Cheryl Greene replied on this blog.)
Regarding “when someone else speaks for you, you lose,” I recall the Ken Burns movie about the suffrage movement, Not For Ourselves Alone: the story of Elizabeth Cady Stanton and Susan B. Anthony. They too found that when they agreed to be represented by male allies in Congress, they were ultimately sold down the river … an expression that itself arose in slavery.
Sooo, what goes around is coming around: nothing about us without us, time after time. Thanks for tying it together, Gilles.
You should also know that many European advocacy organizations use the phrase. Here is an example I know very well: ECPC, the European Cancer Patient Coalition. Their moto: Nothing about us without us,
On my personal site I posted a PDF (scanned, with permission) of the 2001 article “Healthcare in a Land Called PeoplePower” by Delbanco, Berwick et al.
Agreed! I found this as well over the summer and broke out several key passages – it is a very impressive call to action:
In fact, I called my blog post on it : “Now Reading: A 73-cents-like call to action in “Equity and Excellence: Liberating the NHS”?”
Well. Certainly an interesting history on phrases. I’ve thought before that we unconsciously repeat phrases from the past, either through a literal connection (we read or heard it) or through our connection as be-ings of the same Universe (but I won’t get all Spiritual on you).
I actually worked on reading the document when you posted, not being familiar with it. I got very excited through the first two detailed sections, slowed down through the third, and trudged into the fourth until I just couldn’t make it through the details of the reorganization of the government’s structure. I did get the gist of their bottom-up plan in order that patients (basically) run the show.
This is an incredible document to read from an American perspective. I don’t know anything about the British government, but from reading it, sounds like quite a shake-up there, too. I wonder how much of it will be implemented as written. I can’t wait to see.
I also hope the British people are ready for the awesome responsibility that comes with freeing the system from bureaucratic and political influence. I don’t know how the e-patient “movement” has spread, though it’s obviously set fire to the writers here. I think that’s something we might need to work on here, too — reminding people as we move forward that being responsible for one’s own health is awesome, but also sobering as it’s not something we’re used to. (“We” being the majority of Americans.)
Personally it’s the thought of someone else making decisions about my health and well-being that frightens me, which is why I switched PCP’s and became an e-patient so many years ago, now. It was through the screw-ups of a previous PCP making some very poor choices on my behalf, and some very good friends doing a kind of intervention to kick me in the pants, that made me realize just how awful someone else’s decisions can be.
I hope we (meaning those of us who believe in patient-centered health care) can help others get there without them having to go through the same kind of trauma.
“Power to the People!” Indeed.
Annie (and all), you might be interested in Sheena Iyengar’s TED talk last summer on The Art of Choosing. (Susannah tweeted it this weekend; Sheena spoke at Connected Health in Boston last month.)
Listen for the anecdotes that show how “choice” is a cultural construct. I never knew.
I *highly* recommend reading Iyengar’s book, “The Art of Choosing.” I’m about two-thirds through and am loving her perspective on culture. It reads like her TED talk: fluid, funny & clever.
There are a further two documents as part of the Liberating The NHS white paper that you might be interested in – proposals as part of the consultation process (closes 14 January 2011):
“Liberating the NHS: An Information Revolution” 18 October 2010
“Greater Choice & Control” 18 October 2010
Many of the ideas build on those of previous government, but the methodology for delivery is where the radical change sits. So it’s not much of a surprise for us in the UK. However, ‘Choice’ is the word that gets people talking. You might find this piece by Bob Sang useful where he discusses the confused discourse of choice and quality:
Good to meet you, John.
What can you tell us about this “Wanless” that people (including Sang) talk about?
All, here are the papers John cited:
Liberating the NHS: An Information Revolution
Liberating the NHS: Greater Choice & Control
Each has various formats and is open for comments, as John says – this is a work in process.
Wanless was commissioned in 2002 by Gordon Brown, then Chancellor of the Exchequer, to review future funding of the NHS. Chosen because he was a banker?! The report both supported existing policy and gave the Government something significant to build on. Main point is that it focussed on improving public health and reducing inequalities.
Good summary of main points here:
What the report really did was give GB the license to flash the cash. The bad news for GB was that all the money in China wasn’t enough to make stuff happen …and he didn’t expect for Wanless a few years later to come back and bite him on the proverbial….which he did.
Fascinating, thanks. In what way did Wanless come back and (back)bite him?