Welcome to the century of the patientBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d2057 (Published 06 April 2011) Cite this as: BMJ 2011;342:d2057
The 21st century should become the century of the patient, according to Gerd Gigerenzer, director of the Centre for Adaptive Behaviour and Cognition in Berlin and one of the participants in a BMJ discussion group last month. But how do we make it so? What new skills and what shifts in attitudes do both patients and health professionals need? The Salzburg statement on shared decision making lists various actions in its call for patients and clinicians to work together to be coproducers of health (BMJ 2011;342:d1745, doi: 10.1136/bmj.d1745). The statement, which arose from a meeting of the Salzburg Global Seminar last December, provided the springboard for the BMJ round table discussion, chaired by BMJ editor in chief, Fiona Godlee. The discussion broke into three sections: the first looked at the history of shared decision making and the current situation both in the UK and elsewhere; the second looked at a vision of the future and the barriers to getting there; and the third considered the information needs of patients and doctors.
Angela Coulter, director of global initiatives at the Foundation for Informed Medical Decision Making, kicked off the discussion by explaining the need for the Salzburg statement. Although there was much research and policy interest in shared decision making, most patients report that they are not involved or informed in decisions about their care as much as they would like.
“A lot of evidence suggests that clinicians are very good at explaining the benefits and not very good at explaining harms and uncertainties,” she said.
In the US shared decision making is on the political agenda, even gaining a space in the recent healthcare reform bill. But Al Mulley, director of the Dartmouth Center for Health Care Delivery Science in the US, said even here there was still a way to go.
“One shouldn’t underestimate the cultural resistance to change among health professionals, among patients and the public, and among policy makers in order to see it really reach its potential,” he said.
In the UK shared decision making has also gained momentum. However, said Muir Gray, chair of the Department of Health’s information standard, the department has only just woken up to the fact that the country is in the middle of an information revolution and doctors are no longer in control.
“We have to negotiate a new way,” he said.
In the UK decision aids for particular conditions are one way of ensuring shared decision making. However, they are currently available for just three conditions on NHS Direct. A further six will come online in the near future, and 15 are in the pipeline, said Marion Collict, NHS national programme manager for shared decision making.
A Cochrane systematic review of randomised control trials on the use of decision aids showed that they were successful, said Glyn Elwyn, research professor at Cardiff University.
“The evidence is remarkably consistent that when you use these tools it leads to a very good gain in knowledge on behalf of patients . . . The second thing that consistently happens is they become better able to judge the likelihood of harms and benefits happening,” he said.
Professor Mulley said shared decision making was about helping patients to understand that there was a choice. “That’s sometimes a little bit easier said than done . . . Even the most assertive people in the rest of their lives will pull back from responsibility for making a medical decision because they intuit that there is a bad outcome . . . And bad outcomes feel worse when you feel responsible for the decision that led to it.”
Sir Muir said that the quality of information given to patients was important but that the NHS was not a “reliable brand for information.” The information standard, an accreditation scheme developed by the Department of Health to help the public identify trustworthy health and social care information, had been taken up by less than 10% of NHS organisations.
Dr Coulter said that patients with long term conditions were the most likely to benefit from shared decision making.
She added: “It means clinicians respecting patients’ decision making role, respecting their role as coproducers of health . . . the decision aids help in all of this, but actually they’re the easy bit. The much more important bit is changing clinical consultations.”
Barriers to shared decision making
For shared decision making to be a reality, patients and doctors have to work together, said Dr Coulter. “The assumption [is] that my patients don’t want it . . . or people say this is a very middle class concern and in fact it’s not of interest to people with less education or from disadvantaged groups. [This] also turns out to be wrong. And in fact it’s very much those people who have the most to gain,” she said.
Alf Collins, national clinical lead for the Health Foundation’s programme, Co-Creating Health, spoke about its work, part of which involves people with long term conditions training clinicians how to interact with them. “The stories we’ve had from clinicians are amazing: ‘This has transformed my practice. This has transformed the way I think about my work. This has transformed the way I think about the relations I have with people who live with long-term conditions,’” he said.
General practitioner Margaret McCartney said that shared decision making was not appropriate in emergency situations. “The real place where we should be looking at proper informed decision making is not in patients who are sick but in patients who are well. We do very badly in the NHS in terms of not giving people proper choice about things like, for example, cervical screening. It’s impossible to opt out,” she said.
Anu Dhir agreed that as a junior doctor he did not always have the time to implement shared decision making.
“If . . . I’m on the ward and there is a time pressure and there are a number of other things that need doing, it may not be appropriate in that situation simply because of workforce planning. There might not be enough time. There might not be people to take on that role. If you’re, however, in the outpatient setting, that’s a totally different story,” he said.
Professor Elwyn added that there were very few situations in medicine where a decision needed to be taken immediately. He said that systems needed to change so that shared decision making was embedded at an organisational level.
Was there a risk that shared decision making could be seen as a way of driving down costs, asked Dr Godlee, to which Dr Coulter replied: “What is absolutely crucial is that the information that patients are given is unbiased and is a true reflection of the evidence. It would be a disaster if shared decision making was seen as a way of persuading people that they don’t need treatment and not telling them about effective treatments.”
Do doctors and patients have the best evidence?
Professor Gigerenzer began the third session discussion by warning that doctors did not always understand the evidence in their own specialty. This picture of medical ignorance contrasted with the viewpoint of Dave deBronkart, the man behind epatientdave.com, who, when he was diagnosed as having stage IV kidney cancer four years ago, was “prescribed a community” of well informed patients.
“Within two hours of posting my first message on that list [I was told] get yourself to a specialist centre that does a lot of cases. There is no cure. There is one treatment that usually doesn’t work, but when it does about half the time it acts like a cure . . . Get yourself to some place that can do it and don’t let them give you anything else first because if you do you’ll be less likely to respond. And by the way here are the four doctors in your part of America who do it and their phone numbers.”
Tessa Richards, an assistant editor at the BMJ, but speaking as a patient and a mother of a patient, said that in these roles she was “a disempowered supplicant fighting to get care from an inefficient system that isn’t listening too hard or doesn’t seem to be.” She said, “I think everyone working within it is there with good will, but I think the whole system is structured to militate against the opportunity for the patient to really put over what matters to them.”
She talked of an “asymmetry of information,” with patients unable to see any written information about their treatment.
“If you don’t actually understand your own condition, the investigations that have been ordered on your behalf, and you are not fed back the results of those investigations, how can you be an empowered, informed patient participating in decisions about your health?”
What doctors and patients need to acknowledge is the uncertainty inherent in healthcare, said Sue Ziebland, research director of the Health Experiences Research Group.
“When you are told that you’ve got a serious illness you don’t actually want to hear that there is any uncertainty about treatment. What you want to hear is that there is one absolutely recommended treatment that all doctors agree is the best thing for you.
“I think sometimes what happens in the consultation is that some kind of unhealthy collusion goes on where people want to be reassured that this is the best approach, and the doctor falls into trying to reassure . . . with a belief that if they communicate the uncertainty, their patient may also do worse as a result,” she said.
Professor Gigerenzer said that children were taught the mathematics of certainty but not uncertainty. “Understanding evidence is one thing, but there is also another important thing that one can teach children: to dare to know. To dare to ask questions. Not just to ask what should I do, but why should I do what.”
Steve Woloshin, professor of medicine at Dartmouth Medical Center, said that doctors and all health communicators needed to use numbers in a more transparent way. “We can make things complicated. We can talk about relative risk reductions and odds ratios and number needed to treat and all this stuff. We could talk about sales or savings—things that people are familiar with and they’re able to deal with all the time.”
Dr McCartney advocated giving patients their records on a memory stick, and this idea won the support of all round table participants.
But she said simply handing that to patients was not enough, adding: “But equally I don’t think it’s fair either to expect that everything that’s written in medical notes is for the patients because they are shared records . . . I think part of shared is literally shared decision making. The doctor has got a bit of say in what goes on there too.”
Participants in the round table discussion
Fiona Godlee, editor in chief, BMJ
Angela Coulter, director of global initiatives, Foundation for Informed Medical Decision Making
Albert Mulley, co-founder, Foundation for Informed Medical Decision Making, and director, Dartmouth Center for Health Care Delivery Science, New Hampshire, USA
Glyn Elwyn, research professor with an interest in shared decision making, Cardiff University
Muir Gray, chair of the Information Standard, Department of Health, and co-editor of Better Doctors, Better Patients, Better Decisions: Envisioning Health Care 2020
Marion Collict, national programme manager, shared decision making, NHS
Alf Collins, consultant in pain medicine, Taunton and Somerset NHS Foundation Trust, and national clinical lead for Co-Creating Health
Margaret McCartney, writer and general practitioner
Anu Dhir, junior surgical trainee and co-signatory of the Salzburg statement
Gerd Gigerenzer, director, Center for Adaptive Behaviour and Cognition, Max Planck Institute for Human Behaviour, Berlin and co-editor of Better Doctors, Better Patients, Better Decisions: Envisioning Health Care 2020
Lisa Schwartz, professor of medicine, Dartmouth Medical School, New Hampshire
Steve Woloshin, professor of medicine, Dartmouth Medical School
Dave deBronkart, co-chair, Society for Participatory Medicine, and runs www.epatientdave.com
Tessa Richards, analysis editor, BMJ
Sue Ziebland, research director of the Health Experiences Research Group and a reader in qualitative health research, Department of Primary Health Care, University of Oxford
Cite this as: BMJ 2011;342:d2057
Competing interests: The author has completed the unified competing interest form at www.icmje.org/coi_disclosure.pdf (available on request from her) and declares no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.
Provenance and peer review: Commissioned; not externally peer reviewed.