A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave

I recently came across a Pauline Chen piece in the New York Times, Listening to Patients Living With Illness. It refers to a paper by Dr. Wu et al, Adding The Patient Perspective To Comparative Effectiveness Research. According to the paper and the NY Times article, Dr. Wu and his co-authors propose:

1. making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection
2. in some cases requiring the information for reimbursement.

Patient Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed.

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. Despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.

The article also refers to the Patient-Centered Outcomes Research Institute, which was established by the healthcare reform bill. The authors of the paper feel that the potential of such an enterprise will be fully realized only if the institute supports initiatives and strategies that place the patient experience not only front and center in research but also smack in the middle of the medical mainstream.

The charter of the institute provides for transparency. We patients should demand that they go a step ahead and include patients in every step.  They should include ways for patients to participate and see the results of the research they are conducting. They can have a portal where the patients can add their data to the data being provided by their patient panels.

I have not seen these items in their agenda, so we should start by seeking more transparency.
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Due to a production error, the first release of this post had the wrong ending. The last two paragraphs were changed shortly after.