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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 "[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.
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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.
- Alliance of Professional Health Advocates
- The Alliance of Professional Health Advocates (APHA) is an international membership organization for private, professional patient advocates, and those who are exploring the possibility of becoming private advocates. It provides business support such as legal, insurance and marketing. It also offers a public directory of member advocates called AdvoConnection. Following the 2011 death of Ken Schueler — a charter member of the APHA, described as "the Father of Private Patient Advocacy" — the organization established the H. Kenneth Schueler Patient Advocacy Compass Award. The award recognizes excellence in private practice including the use of best practices, community outreach, support of the profession and professional ethics.
- National Association of Healthcare Advocacy Consultants
- National Association of Healthcare Advocacy Consultants (NAHAC) is a nonprofit organization located in Berkeley, California. Joanna Smith founded NAHAC on July 15, 2009 as a broad-based, grassroots organization for health care and patient advocacy. To that end, it is a multi-stakeholder organization, with membership open to the general public.
- National Patient Advocate Foundation
- The National Patient Advocate Foundation is a non-profit organization in the United States dedicated to "...improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels." The National Patient Advocate Foundation was founded simultaneously with the non-profit Patient Advocate Foundation, "...which provides professional case management services to Americans with chronic, life-threatening and debilitating illnesses."
- Patient Advocates Australia
- Patient Advocates Australia, founded by Dorothy Kamaker, is a support option for consumers of aged and health care in Australia. For the elderly, an emerging need has arisen for patient advocacy in residential aged facilities. The Aged Care Royal Commission established in 2018 has made interim recommendations regarding a need for vigilant advocacy for residents of nursing homes to protect them against rampant abuse and neglect. The Australian circumstance originally differed from that of the United States in that there was little call for advocacy regarding denial of claims by health insurers. However, 2018-2020 has seen a dramatic decline in private health insurance and contested claims are becoming commonplace as insurers struggle for survival. Up until mid 2019, private health insurance (PHI) was carried by over 70% of the population and was a vibrant industry, with those paying for insurance cover partly reimbursed by the Australian Government through tax rebates. Between 2017-2019, membership of PHI dropped dramatically and the decline continues. During the same period, a controversy emerged amongst members of the Australian Medical Association about the extreme costs (above what Medicare/PHI would cover) patients were incurring, largely from rogue surgeons operating in private hospitals.
Center for Patient Partnerships
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.
- New York
- In New York, the Office of Patient Advocacy within the New York State Office of Alcoholism and Substance Abuse Services (OASAS) is responsible for protecting the rights of patients in OASAS-certified programs. The office answers questions from patients and their families; provides guidance for health care professionals on topics related to patient rights, state regulations, and treatment standards, and intervenes to resolve problems that cannot be handled within treatment programs themselves.
- In California, the Office of the Patient Advocate (OPA), an independent state office established in July 2000 in conjunction with the Department of Managed Health Care, is responsible for the creation and distribution of educational materials for consumers, public outreach, evaluation and ranking of health care service plans, collaboration with patient assistance programs, and policy development for government health regulation.
Such state government offices may also be responsible for intervening in disputes within the legal and insurance systems and in disciplinary actions against health care professionals. Some hospitals, health insurance companies, and other health care organizations also employ people specifically to assume the role of patient advocate. Within hospitals, the person may have the title of Ombudsman or Patient Representative.
Nursing and advocacy
The American Nurses Association (ANA) includes advocacy in its definition of nursing:
Nursing is the protection, promotion, and optimization of health and abilities, prevention of illness and injury, facilitation of healing, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, groups, communities, and populations.
- The nurse's primary commitment is to the patient, whether an individual, family, group, or community.
- The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient.
Relationship to pharmaceutical industry
Some patient advocacy groups receive donations from pharmaceutical companies. In 2015, 14 companies donated $116 million to patient advocacy groups. A database identifying more than 1,200 patient groups showed that six pharmaceutical companies contributed $1 million or more in 2015 to individual groups representing patients who use their drugs, and 594 groups in the database received donations from pharmaceutical companies. Fifteen patient groups relied on pharmaceutical companies for at least 20 percent of their revenue in the same year, and some received more than half of their revenue from pharmaceutical companies. Recipients of donations from pharmaceutical companies include the American Diabetes Association, Susan G. Komen, and the Caring Ambassadors Program.
- Patient empowerment
- Health advocacy
- Organizational Ombudsman
- Geriatric care management
- Patient opinion leader
- Patient participation
- Keating & Cambrosio 2012, p. 81.
- Farber, Sidney; Toch, Rudolf; Sears, Edward Manning; Pinkel, Donald (1956). "Advances in chemotherapy of cancer in man". Advances in Cancer Research. 4: 1–71. doi:10.1016/s0065-230x(08)60721-6. ISBN 9780120066049. PMID 13381606; quoted in Keating & Cambrosio 2012, p. 81.
- Keating, Peter; Cambrosio, Alberto (2012). Cancer on Trial. Chicago, IL: University of Chicago Press. pp. 80-83. ISBN 9780226428918. OCLC 713181629.CS1 maint: ref=harv (link)
- Smith, Joanna. "History of NAHAC". National Association of Healthcare Advocacy Consultants. Retrieved 10 October 2017.
- "About APHA". The Alliance of Professional Health Advocates. Retrieved 6 July 2016.
- Kamaker, Dorothy (26 September 2015). "Patient advocacy services ensure optimum health outcomes". Business. Sydney Morning Herald. Fairfax Media.
- Flodgren, Gerd; O'Brien, Mary Ann; Parmelli, Elena; Grimshaw, Jeremy M. (24 June 2019). "Local opinion leaders: effects on professional practice and healthcare outcomes". The Cochrane Database of Systematic Reviews. 6: CD000125. doi:10.1002/14651858.CD000125.pub5. ISSN 1469-493X. PMC 6589938. PMID 31232458.
- "The H. Kenneth Schueler Patient Advocacy Compass Award". The Alliance of Professional Health Advocates. Retrieved 19 February 2015.
- "Mission Statement". National Patient Advocate Foundation. Archived from the original on 16 February 2015. Retrieved 16 February 2015.
- "Our History & Mission". Patient Advocate Foundation. Retrieved 16 February 2015.
- "Our History". Center for Patient Partnerships. Retrieved 10 October 2017.
- "Adult and Returning Students: Health Advocacy Certificate Program". Center for Patient Partnerships. Retrieved 10 October 2017.
- Hurst, Marsha; Gaines, Martha E.; Grob, Rachel N.; Weil, Laura; Davis, Sarah (2008). "Educating for Health Advocacy in Settings of Higher Learning". In Earp, Jo Anne L.; French, Elizabeth A.; Gilkey, Melissa B. (eds.). Patient Advocacy for Health Care Quality: Strategies for Achieving Patient-Centered Care. Jones and Bartlett. pp. 481–506. ISBN 978-0-7637-4961-3. OCLC 79256746.
- "Patient Advocacy Services". Office of Alcoholism and Substance Abuse Services. New York State.
- "What is Nursing?". American Nurses Association. Retrieved 10 October 2017.
- American Nurses Association (2003). Nursing's Social Policy Statement (2nd ed.). Washington, DC: American Nurses Association. p. 6. ISBN 978-1-55810-214-9. OCLC 300247546.
- American Nurses Association (2004). Nursing: Scope and Standards of Practice (1st ed.). Washington, DC: American Nurses Association. p. 7. ISBN 978-1-55810-215-6. OCLC 300966858.
- "2001 Approved Provisions". NursingWorld. American Nurses Association, Inc. Archived from the original on 15 June 2010. Retrieved 2010-06-08.
- "Patient Advocacy Groups Take in Millions from Drugmakers. Is There a Payback?". 6 April 2018.