Patient advocate

Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient's care.

Typical advocacy activities are the following: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their careers on healthcare-related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organizations of health-care professionals, the educational world, and the medical and pharmaceutical research communities.

The origin of patient advocacy, in its current form, can be traced to the early days of cancer research and treatment, in the 1950s. It is part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia. "Total care signified that the cancer clinician treated the family as a whole," and "[t]he concept of Total Care subordinated clinical investigation to patient welfare...." This is "...because clinical investigation in the field of cancer may be carried out only as part of the total care of the patient." In the 1950s, clinicians recruited cancer patients for studies, and suspicion reigned at the National Institutes of Health (NIH) as researchers had to convince doctors and patients they were not harming people to conduct experiments. To properly represent patients in this medico-legal and ethical discussion, patient advocacy came into being.

Patient advocacy activities often start as an offshoot activity from patient support groups, or are the primary role of patient interest groups. Their activities include, for a large part, support activities such as educating patients and carers to cope with the effects of the patient's disease. Patients and survivors suffer from the direct effect or the consequences their disease has on their quality of life. Family, especially family carers, and survivors, go through difficult phases of adaptation of their daily routine and lifestyle to accommodate the disease. The financial impact of ill health on the whole family should not be underestimated; the psychological effects of those changes have a very great impact.

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