16 Aug, 13 | by BMJ Group
Reports urging health professionals to listen to patients and use their experience to improve the quality, value, and safety of healthcare have been flowing thick and fast. Last week another swelled their ranks. In his report on how the NHS might achieve the Shangri La of causing “zero harm,” US health guru Don Berwick headlined the message that “no source of information is more valuable” than the patient’s voice. So does another report launched this week by the US Institute of Medicine (IOM). Fronted by a video, it explores the why, where, and how of patient partnership and is based on a workshop held earlier this year, which I followed online.
It was great to have the opportunity to do so. Being a distant spectator in no way prevented one observing how powerful the patient’s voice can be and just how much some patient advocates have to teach us. We should all be working to ensure medical meetings fulfil the “Patients Included” criteria.
The challenge of course is to find the time and the means to have a meaningful exchange with patients and their relatives in the hurly burly of routine practice. It’s easy to say, as the IOM video does, that health professionals should “talk with, not at or about” patients, and “listen, and listen fully” to them, but it’s a struggle to do it in the real world. We need to get better at finding ways to elicit and use patient’s views in the course of routine practice and to promote their confidence and ability to put them over. Increasing health literacy, as a recent report from WHO spells out, is important. The introduction into practice, albeit slowly, of new tools and methods to promote partnership such as decision aids and greater use of peer to peer support will undoubtably help.
It’s also encouraging to see how the science and art of listening and responding to patients is being developed. In a new book, Understanding and using Health Experiences, edited by Ziebland S et al, the methodologies of charting patients experiences are set out. Illustrative examples show how patient experience can improve the design and delivery of health services.
So far so promising, but after a week of family outpatients visits it’s been dispiriting to be reminded of the gap between what evangelists for partnership are calling for and the average ground level experience.
Sitting in outpatients after a week’s wait to get a possible fracture assessed was a familiar scene. Patients in serried ranks looking bored and frustrated facing harassed clerical staff and a video screen transmitting the message that long delays could be expected. Called to a cubicle at last, I found myself alongside a family incandescent about their two hour wait and curious as to why they needed to be seen at all given that their child’s problem had resolved uneventfully. We both got four minutes of the doctor’s time. Unsurprisingly, this was spent largely on inspection, reassurance, and instruction. Suddenly a shared decision making moment came and it took me by surprise.
“Your X ray shows no fracture, but we could do a CT scan if you like?”
I declined on the grounds that it would not alter management. And I’m dead against wasting money even if it’s not my own.
As I hobbled out of the clinic past the mostly patient patients still waiting to be seen I wondered yet again: “Why are vast chunks of their time wasted in suspended animation in outpatient departments and GP surgeries? Why not use it to garner and record their concerns, priorities, preferences, experiences, and views, and provide information resources to browse if they choose? And when will it become routine for patients to communicate directly with health professionals by email and by this means decimate the size of their follow up clinics?”
One week on and another consultation. This one is admirably two way, but hampered by the similarly familiar scenario that neither the doctor nor I had access to my medical records. Roll on the day when patients get to hold their own records on memory sticks.
A second family experience evoked further frustration. A relative with complex disease on a shed load of medication made a list of things that were bothering her prior to her bi annual visit to the specialist. She returned fazed. Not because she was seen by a nurse rather than the doctor she is “under” (a term ripe for banning), but because she had been stopped in her tracks. As she tentatively embarked on what she hoped would be a two way conversation about embarassing gastrointestinal problems the single, shortly delivered response was, “the drugs you are on are not known to cause such problems.”
So much for dialogue. Getting better at it is certainly not easy and its uncertain if advocacy alone will improve it. Can and should health professionals be incentivised to engage, listen, respond, and empower patients to take on a partnership role? Or do we wait till it happens organically as more and more patients crowdsource solutions to their problems, turn up to clinics, and simply demand it?
Tessa Richards is Analysis editor, BMJ.
Patient consent obtained.