This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big, 21 article “Spotlight” supplement on “patient centred care.” The print edition is due out tomorrow, Feb. 12. The list of articles in the Spotlight is below. Important: they’re all open-access – no subscription required.
If I’m correct, this is by far the biggest boost (and acknowledgment!) our movement has seen so far. It brings a rich diversity of voices, patients and clinicians alike, from at least eight countries, all talking about patient-physician collaboration, in one of the most credible medical journals in the world.
I want to specifically call out the SPM members who contributed or are mentioned in it. Here’s my list so far:
- Amanda Greene and I authored articles
- Cristin Lind is a “second author” on the article about patient reported outcomes
- Hugo Campos’s “iceberg graphic” (first shown on this blog) is in the print edition (not online)
- Sara Riggare is in the audio roundtable
- Danny Sands is mentioned in “Seeing things from the patients’ view”
- Other members and past members listed in my article include Hugo Campos, Kathi Apostolidis, Regina Holliday, and “@RAWarrior” Kelly Young
(I’m sure there are more – I’ll add them as we discover them. Haven’t had time to read all 21!)
Also, via Facebook and now on the BMJ site, our member Patricia Pooley already wrote a great comment (they call them “Rapid Response”) on my article, about how she figured out while hospitalized that she had a nasty infection; her physician welcomed it, and week later discovered the same problem in another patient. Collaboration!
Here’s the article list. It’s a bonanza – read, tweet, discuss! (Note: the BMJ welcomes online discussion, like a blog, but they don’t call it “comments” – look for the “Rapid Response” tab on each article.)
Contents of BMJ Spotlight supplement on Patient Centred Care
February 12, 2015 edition (released online Feb 10)
Sorted by position in Google search results
Editorial – Tessa Richards, Angela Coulter, Paul Wicks (824 words)
Patient centred care is central to the mission of healthcare, yet traditionally neither patients nor the public have had the power to shape the services they use and …
Podcast with many speakers – 1 hr 17 min
Also on the same page (no separate URL): “Doing it for themselves” – 52 minute compilation of Tessa’s phone interviews with many others around the world
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Commentary: Swedish initiative on person centred care Inger Ekman et al (584 words)
The Swedish approach to implementing person centred care is being led and evaluated by a dedicated unit established in 2010 at the University of Gothenburg. The unit focuses primarily on people living with long term conditions…
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Delivering person centred care in long term conditions
Eaton et al (~2000 words)
Transforming care for people with long term conditions, including support for self management, requires comprehensive reform of health systems largely geared to provide acute care. Simon Eaton, Sue Roberts, and Bridget Turner explore the barriers to change, arguing that the success of new approaches will depend on whole system change and strong leadership
Blog post (485 words)
The health systems of the European Union make up a central part of Europe s social protection. They contribute to social cohesion and social justice as well as …
Alex Silverstein (Patient) (837 words)
Managing my health has, and always will be, a partnership. I had type 1 diabetes diagnosed at age 18 months and I am now 27. Along the way my diabetes has been managed in a partnership between family (mainly my mother), friends, school, college, the workplace, the charity sector, health professionals, drug companies (who provide insulin, test strips, etc), the patient community (through peer support and online resources), and, most importantly, me, the person at the centre.
Nigel Hawkes (1945 words); cites Danny Sands
Patient centred care has many evangelists but few practitioners. Doctors aspire to a state of grace in which their practice is truly focused on the individual, not on a passing stranger with a set of symptoms. But time is short, pressures great, and financial ligatures too tight.
Luxford & Newell (2866 words)
The Clinical Excellence Commission in New South Wales is driving person centred care by stimulating districts to compete to provide it. Karen Luxford and Stephanie Newell describe the integrated approach, its uptake, and encouraging early evidence of change…
BMJ editor Anita Jain (1875 words)
Public disillusionment with health service provision has led patient advocates in India to mobilise and push for change, Anita Jain reports
deBronkart (1763 words)
Following in the path of feminists and civil rights leaders, informed patients are building a progressive social movement to improve medical care. Dave deBronkart says medicine should let patients help improve care, share responsibility, and think for themselves
Eugene Nelson et al, incl patient voices Cristin Lind & Andreas Hager (1700 words)
Scores of tools to measure outcomes that matter to patients have been developed over the past 30 years but few are used routinely at the point of care. Nelson and colleaguesdescribe examples where they are used in primary and secondary care and argue for their wider uptake to improve quality of care..
Farhan Amin (GP) (414 words)
Our second initiative to promote patient centred care has been to create Patient Memoirs (www.patientmemoirs.com), a local, web based, peer to peer support …
Paul Wicks (942 words)
When I started researching amyotrophic lateral sclerosis (ALS) in 2002 I was trained to interview patients and administer a 12 item scale assessing their ability to walk, speak, and breathe. … we were not allowed to tell patients what their score was. The scale was seen as a research tool to describe groups, not the progress of individuals, so would it help or harm patients to know they scored 23 or 35?
Gordon & Oliver (452 words)
As the NHS struggles in the face of high attendances at emergency departments, Eaton and colleagues’ reminder about the importance of a structured response to long term conditions is timely.1 The approaches presented go some way to providing a framework for service development, but they also seem beguilingly straightforward.
Robert et al (incl patient Gordon Sturmey) (800 words)
Glenn Robert and colleagues describe an approach that aims to ensure that healthcare organisations realise the full potential of patients—the biggest resource they have for improving the quality of care
Amanda Greene @LALupusLady), patient (500 words)
Six months after diagnosis, I attended my first lupus support group, where the topic for discussion was funeral planning. Questions posed included “what prayers and flowers do you want?” For me dying was not an option. …
Agoritsas et al (2088 words)
Decision aids can help shared decision making, but most have been hard to produce, onerous to update, and are not being used widely. Thomas Agoritsas and colleagues explore why and describe a new electronic model that holds promise of being more useful for clinicians and patients to use together at the point of care
Walker et al (Beth Israel Deaconess) (2344 words)
OpenNotes in the BMJ: The move to offer patients online access to their clinicians’ notes is accelerating and holds promise of supporting more truly collaborative relationships between patients and clinicians, say Jan Walker, Michael Meltsner, and Tom Delbanco
Dominick Frosch (Gordon & Betty Moore Foundation) (973 words)
Twenty five years after he had type 1 diabetes diagnosed, Dominick Frosch finds health professionals still fail to treat him as an equal in managing his disease
@Berci (683 words)
If the waves of change from disruptive technologies and a restructured medical ecosystem hit us unprepared, which is the situation we are in now, there is a risk that medicine will become even more of a technology based service. To prevent this, we should be consciously and purposefully redesigning health systems by preparing for the now.
Montori & Tabini (Mayo) (481 words)
Patients and careg ivers value access to their records … But we think they will demand better. Opening access to notes needs to be accompanied by reform of their content if they are to become a more effective communication tool …
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I particularly urge everyone to listen to the podcasts – just start them playing, like a radio broadcast – they have so many good thoughts! There are two tracks –
- “How can we get better at providing patient centred care?” 1 hour 17 min from a 3 hour Roundtable recorded at the BMJ last month
- SPM people included: Sara Riggare, former member Michael Seres, me (and perhaps others)
- “Doing it for themselves” – Another 52 minute one, compiled from phone calls editor Tessa Richards recorded with people in several countries, including our Cristin Lind.
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Please share widely in your own networks – especially articles that are of particular interest to your communities. Game on – spread the word!
Great work Dave! thanks not only for writing about from patient-centered to people powered but also for this explanatory and handy listing of all the articles of the BMJ Supplement on Patient-Centered Care. Till now it was talked about, now it’s time that we let those practising it write about it.
It just happened that I learned today from another highly expert patient group, that at the NIH today at their Precision Medicine Workshop (http://www.nih.gov/precisionmedicine/workshop.htm) they talk about Participants, not patients, not research subjects!!Participants is understood covering all those participating in the cohort study researchers, doctors, nurses, patients, etc.
This comes after in Europe in 2013, an FP7 EU funded research project on mhealth in cancer supportive care, first talked (to my knowledge) about patients as co-researchers and doing it! I can state it is done, as I represent my organization ECPC-European Cancer Patient Coalition in the project. Patient input is present in all phases of the eSMART project design, including the protocol, ethics, etc, http://www.surrey.ac.uk/esmart/about/index.htm
So, we can say that something starts moving in the patient movement!
That’s great news, Kathi! We should make it a quick follow-on blog post!