One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence “that comes from research guided by patients, caregivers and the broader health care community.”
In order to “guide” that research, patients will offer their time and their experience to serve on various panels alongside scientists and other stakeholders, many of whom have competing agendas. This means that representing the patient perspective in research governance, priority-setting, design, execution and dissemination is not a good task for the shy or the ill-prepared. Not only do you have to have reflected on your own experience as a patient, but you have to have a good sense of how much you can generalize from that experience. This is, after all, not about you. It is about us – all of us patients.
Sometimes this means gathering information from others who have a similar diagnosis and who have been treated with similar approaches. What was getting chemotherapy for breast cancer like for you?
Sometimes it means learning about how people with different kinds of heart conditions or kinds of cancer experience their diagnoses and treatments or health care in general. What happened when you were discharged from the hospital?