Having recently attended the Summit on a Research Agenda on Patient Centered Care, I thought it might be useful to lay out what seems to me to be the three main areas of potential research, based on my experience as a patient. These may not fit into traditional categories, but might be helpful.
Research Into Improving Patient Involvement With Treatment Decision Making and its Impact
There is plenty of work going on in this area, and I would be particularly interested in things like the effect of training doctors and others on how to do a better job, of identifying best practices, of the use of video of the interaction being given to patient and family for later review, of training patients and families on how to listen and ask questions, and how to refuse to accept the inadequate opportunity to make their own decisions.
Other questions would be how care professionals can find out how people like to be engaged in these conversations, when and who are best to raise issues, and how they should be revisited.
With respect to impact, it must be remembered that there are many kinds of impact, and some may take a long time to show.
Research Into Patient Input in Practice, Policy and Management
Again the role of councils is being studied, and we need more to make the case, and particularly more on the challenges that these attempts face and how to overcome them.
I heard, for example, a wonderful story about how in one hospital putting a family member on the root cause analysis team resulted in an immediate policy that when something went wrong, the family must be notified within 20 minutes. Previously it had taken months.
These changes should be occurring within practices, within departments, within hospitals, within healthcare funding agencies, and within nursing homes and retirement communities.
Research Into Integration of the Patient Perspective into Research Generally
While there are already significant efforts to bring patients into the process of research design, this tends to be at the end of the process. Rather we need to involve patients in the identification of areas of inquiry and the design of the questions, rather than the questions of how outcomes are measured.
We have to do more looking into how research is described, shared, presented and made available. I was involved in a clinical trial and got a nice letter with, I think a one sentence description of the result. There should, of course, have been a fuller description of the results enclosed, a link to the full report, and, indeed, a general requirement that all federally funded research should include a plain language and publicly posted summary of the research and results.
Research Into Improving the Patient Experience of Treatment and Care
Let me give a concrete example. Three years ago, I was hospitalized over a weekend with suspected flu (yes that’s a benefit of having bone marrow cancer, you get much more careful care, not be be knocked, and it turned out very helpful in terms of broader resources that I got connected to.) Anyway, at one point, I was confronted round my bed with gang of very caring but very distant caregivers wearing almost the outfits that the medical team wore in ET. I asked if they could make themselves more visible, and they did. But what I realized was that it might be possible, for example, to design anti-infection masks through which one could see as well as breathe. It would make for less distancing and obviously be particularly helpful for those who watch lips in order to help them hear what is being said. I suspect that many of us seniors do that, often without realizing we do. (As someone at our retirement community once said “Half the people here wear hearing aids, and the other half should.”)
Other examples of such thinking might be how one arranges a waiting room to get patients and families talking to each other, whether nerve locations near and infusion port could be mapped, to reduce pain on access, why the pain of bone marrow aspiration seems to vary so much (trust me, it does), whether the current requirement of not eating for, it seems like a week before sedation or anesthesia is really research-based, or just goes back to an earlier era when we knew far less about bowl rates and could measure them.
More generally, these are all very much experience driven, and not so likely to be thought of by non-patients. Although, of course, there is really no such thing as a non-patient, and medical professionals undergoing their own testing and treatment should be seen as a very special resource for improvement.
While many of these specifics might appear to be at the margin, feeling good and eating well surely help both long term survival and quality of life.