There is something to be said for wearing your heart on your sleeve, and few do it to greater effect than Margaret McCartney, a GP in Glasgow. She exuded frustration as she galvanised a session on public and patient involvement at the Evidence Live conference, in which she explained why she had reached the point of asking, “What are we GPs doing? And who is it for?”
“We are being forced to meet targets and priorities set by the government not by our patients,” she said, and it’s leaving scant time to meet their needs. “Most of them are old, with multimorbidities and they just want our help to get through the next bout of illness.”
Much of her ire was directed at emotive NHS and private enterprise advertisements emblazoned on buses and billboards urging people to comply with screening programmes and undergo health checks. Some push the message that if they don’t “comply” they and their loved ones will suffer. The upshot, McCartney said, was that GPs get deluged by the worried well who undergo screening tests of unproven value and don’t know what to make of the results.
Where is the conversation about overdiagnosis? The harms as well as the benefits of testing? And the analysis of the opportunity costs of chasing targets rather than listening and responding to patients concerns and priorities, she asked.
The audience applauded. Peter Gotzsche, director of the Nordic Cochrane Centre suggested the NHS should be sued for disregarding the EU code on advertising standards. Someone suggested a “Just say No to breast screening” campaign. Other ideas were a “scepticism about screening” movement, charging co-payments to those who undergo unnecessary tests, and doing a better job of sharing uncertainties about risks and benefits with patients. Then the room went quiet. What was there to say? Could we admit that most of us focus on complying with government diktat, don’t meet our patients needs, or even give them the time and opportunity to tell us what these are?
It was a relief for some that the next talk was an example where engaging and listening to patients concerns is core business. Over the past few years the James Lind Alliance has been broking conversations between clinicians, patients, and patient organisations to identify and log unanswered questions about treatment for common, mostly chronic diseases (www.library.nhs.uk/DUETS). Its work has flagged up a large “mismatch” between the questions people living with disease want answered, and the questions being addressed in clinical trials, said Sally Crowe, co- chair of the alliance.
More cheering news came from the county of Somerset, legendry home to the Holy Grail. A thought that sprang to mind as Martine Rice, head of patient experience at Taunton and Somerset NHS Foundation Trust, described how the trust had gone “snorkelling for good ideas” by tapping into patient and staff perspectives. The trust had, she said, turned itself into a “learning organisation” and the quality and safety of its care had improved.
“We look at the patient pathway” she said, “shadow what happens to them, ask their views, and use their stories.” Speaking as a patient and the mother of a patient, I can’t wait to be asked to share mine, and it’s encouraging to see signs of patient and public engagement becoming more than tokenistic, and decisions on service provision informed by expert patient experience.
Evidence suggests that informing patients, asking them what they want and value, and sharing decisions with them has little impact on medical outcomes, said Brian Haynes, Editor of ACP Journal Club. But there is a moral imperative to do it and it’s worth underlining that we are not good at identifying and measuring outcomes that matter to patients. There is also a compelling case, currently being pushed by the Society for Informed Shared Decision Making, which meets in June (www.isdm2013.org), for shared decision making to be central to obtaining informed consent for treatment and investigation.
McCartney’s calling card has “Demand evidence and think critically” on the front. Maybe the NHS should be pasting this up on the billboards.
Tessa Richards is the analysis editor, BMJ.