Patient advocacy

Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and caregivers. 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 carers 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 '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. As global healthcare systems started to become more complex, and as the role of the cost of care continues to place more of a burden on patients, a new profession of private professional advocacy began to take root in the mid-2000s. At that time, two organizations were founded to support the work of these new private practitioners, professional patient advocates. The National Association of Healthcare Advocacy Consultants was started to provide broad support for advocacy. The Alliance of Professional Health Advocates was started to support the business of being a private advocate. Proponents of private advocacy, such as Australian advocate Dorothy Kamaker, have noted that the patient advocates employed by healthcare facilities have an inherent conflict-of-interest in situations where the needs of an individual patient are at odds with the business interests of an advocate's employer. Kamaker argues that hiring a private advocate eliminates this conflict because the private advocate “…has only one master and very clear priorities.” Patient opinion leaders, also sometimes called patient advocates, are individuals who are well versed in a disease, either as patients themselves or as caretakers, and share their knowledge on the particular disease with others. Such POLs can have an influence on health care providers and may help persuade them to use evidence-based therapies or medications in the management of other patients. Identifying such people and persuading them is one goal of market access groups at pharmaceutical and medical device companies. Founded in 2000, the interprofessional Center for Patient Partnerships (CPP) at University of Wisconsin–Madison offers a health advocacy certificate with a focus on either patient advocacy or system-level health policy advocacy. The book chapter 'Educating for Health Advocacy in Settings of Higher Education' describes CPP's pedagogy and curriculum. In the United States, state governmental units have established ombudsmen to investigate and respond to patient complaints and to provide other consumer services.