Most published studies are marked by a preponderance of data documenting even minor blips in laboratory values or changes in the size of a spot...
Few studies, however, focus on the patient experience.
The result of all this emphasis on cure has been a nearly embarrassing richness of choice for patients with diabetes, heart disease, H.I.V. infections and even some cancers. The increasingly sophisticated treatment regimens that now make up medicine’s armamentarium have transformed once life-threatening diseases into chronic ones, but in the process have given rise to a group of individuals who are caught in the unenviable position of living with an illness that never quite goes away. No longer forced to make once-in-a-lifetime life-or-death treatment decisions, they instead struggle each day with the side effects of the very treatments that keep them alive.
“To some extent, we’ve conquered death,” said Dr. Albert W. Wu, lead author and a general internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “Now we have people living with chronic illnesses, and how they experience quality of life every day has become an important part of how they are doing and whether the treatments are worthwhile.”
To effectively capture the patient perspective, Dr. Wu and his co-authors propose making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection, in some cases requiring the information for reimbursement (emphasis added). For several months now, they have been incorporating data about patient experiences into routine medical practice at Johns Hopkins. Using a dedicated portal called PatientViewpoint.org, patients can, at the suggestion of their physicians, fill out surveys about their energy levels, social functioning, mental health, nausea and pain. The information is then handled like more traditional clinical testing; access is reserved for the patients themselves and their doctors.
Currently, the site is open only to patients diagnosed with breast or prostate cancer, but Dr. Wu and his colleagues hope that eventually all doctors will be able to order patient surveys that measure experiences like levels of pain, physical functioning or depression, proactively identifying results that are high or low, then reviewing those results with patients. And despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.
“Patients want to have more conversations with their physicians and other providers about these kinds of issues,” Dr. Wu said. “Sometimes it’s difficult to cover all this information during the medical encounter, and these surveys may be another opportunity to do that.”
Couple thoughts. Overall I love the concept: more patient voice in the data stream will lead to research themes identified that can help more patients. However there is an element of compulsion implied by "in some cases requiring the information for reimbursement" that wouldn't occur in Ontario presumably.
There are also different routes to this end: here the method is "doctors will be able to order patient surveys". What about collaborative narrative medicine (written up here and on BLOOM's excellent interview with Dr. Rita Charon) where staff and patients write their stories to learn each others' perspectives.
It also isn't the case that doctors suddenly woke up to the fact that not all patients are cured, or that all patients depend only on doctors for information. These surveys seem like a medical world catching up to and trying to rein a horse that has bolted the clinic. After centuries of medical centered care and little more than a decade of patient and family centered care, new web portals allows patients to share their own information. The wildly successful PatientsLikeMe portal has 60,000 patients logging their health details and communicating on options. The site's tagline is "Learn from the real-world experiences of other patients like you."
U.S doctors also face a compensation problem. Dr. Robert Martensen in a blog entry titled "Talking and Listening to Patients" suggests conversations (the most prolific procedure of all) is poorly compensated.
“I can spend an hour and a half talking with the patient and the patient’s family when the patient learns they have a life threatening diagnosis. We can spend 2 hours together which is perfectly appropriate – it’s the way to go I think to find out what matters to them, relevant medical history, do a physical exam, etc. In New York State, Medicaid pays $18 dollars for that service. If, on the other hand, I said with the patient, you have this problem we think, it looks like….today we are going to be doing a lot of tests, spend 15 minutes with the patient, maybe do a procedure myself – that procedure would be well compensated. But my time to listen, that is not compensated and yet that makes all the difference in what people experience as they are navigating this very daunting set of circumstances.”
Perhaps surveys will be better compensated too. Back here in Ontario we can also work to ensure medical and nursing and allied professional education teaches the art of listening and talking and being accountable to those conversations. Part of that work is educators inviting parents to talk to students.