A home for patient-oriented research

[CanLyme Note: On the Lyme disease file in Canada the patient has been rejected, removed, and denied by the same people we pay to protect us. We put forward experts, they are not accepted as experts. We put forward scientific evidence, it is ignored. The Canadian Institute of Health Research and the Public Heath Agency of Canada collude to exclude the patient and their experts.]

All too often, what’s important to patients differs from what health researchers want to study. A recent review in the field of kidney dialysis, for example, showed that only one in five clinical studies addressed an issue that was on a top-10 list prioritized by patients, their caregivers and clinicians.1Researchers were mostly focused on hemodialysis, whereas patients were more concerned with troubling symptoms, such as itching, cramping and restless legs. Patient-oriented research, in which patients play an integral role in the research team, is based on an understanding that people with lived experience of an illness usually have a good idea of what their health care needs are or how they would like to improve their quality of life. It also empowers patients with knowledge and influence while offering researchers greater insight into their area of study.2