Health advocacy

It has been suggested that information about advocacy for individual patients be split out and merged into the article titled Patient advocacy, which already exists. (Discuss) (May 2023)

Health advocacy or health activism encompasses direct service to the individual or family as well as activities that promote

Patient representatives, ombudsmen, educators, care managers, patient navigators and health advisers are health advocates who work in direct patient care environments, including hospitals, community health centers, long term care facilities, patient services programs of non-profit organizations or in private, independent practice. They collaborate with other health care providers to mediate conflict and facilitate positive change, and as educators and health information specialists, advocates work to empower others.^{[citation needed]}

In the policy arenas health advocates work for positive change in the health care system, improved access to quality care, protection and enhancement of patient's rights from positions in government agencies, disease-specific voluntary associations, grassroots and national health policy organizations and the media.

There may be a distinction between patient advocates, who work specifically with or on behalf of individual patients and families, or in disease-specific voluntary associations, and health advocates, whose work is more focused on communities, policies or the system as a whole. Often, however, the terms "patient advocate" and "health advocate" are used interchangeably

Rapidly growing areas of health advocacy include advocates in clinical research settings, particularly those focused on protecting the human subjects of medical research, advocates in the many disease-specific associations, particularly those centered on genetic disorders or widespread chronic conditions, and advocates who serve clients in private practice, alone or in larger companies.

History

A separate and identifiable field of health advocacy grew out of the patient rights movement of the 1970s. This was clearly a period in which a "rights-based" approach provided the foundation of much social action. The initial "inspiration" for a "patient bill of rights" came from an advocacy organization, the National Welfare Rights Organization (NWRO).^[2] In 1970, the NWRO list of patients' rights was incorporated into the Joint Commission's accreditation standards for hospitals,^[3] and reprinted and distributed by the Boston Women's Health Book Collective—authors of Our Bodies, Ourselves^[4]—as part of their women's health education program. The preamble to the NWRO document became the basis for the Patient Bill of Rights adopted by the American Hospital Association in 1972.^[5]

The field of health advocacy also has deeper roots in the voluntary organization sector of society, where the early health advocates were more typically advocating for a cause, not for an individual. These health advocates preceded hospital-based patient advocates and are part of a long history of American involvement in social organizations.

In developing nations, groups such as Blue Veins may face additional difficulties getting their messages out.^{[citation needed]}

Recently disease specific advocacy and environmental health advocacy have come together, most noticeably in the adoption by advocates of the "

In the early 1990s Healthcare Advocates, Inc. determined that lobbyists (advocates) were helping the masses, but there were no organizations helping patients, one patient at a time. They developed a new model of advocacy that allowed patients to access services directly[13] thereby resolving the issues associated with access to care and reimbursement through their employers.^{[citation needed]}

By 2007, it was recognized that outreach to most patients who would need personal assistance from health advocates would have to come from the private sector. Individuals, some with backgrounds such as nursing or case management, and others who had experience helping loved ones or friend navigate the healthcare system, began establishing private practices to provide those services to client-patients. A new organization, The Alliance of Professional Health Advocates,^[14] was founded to support those new private advocates, plus those considering such a career, with legal, insurance, marketing and other business advice.^{[citation needed]}

The Visiting Nurse Associations of America (VNAA) is also a nonprofit association which is a health advocate for its nonprofit visiting nurse agencies and home health providers. The VNAA relocated to DC from Boston in 2008 to be able to be a strong health advocate for its members.^{[citation needed]}

Professionalization

There were three critical elements of developing a profession on the table in these early years: association, credentialing and education. The Society for Healthcare Consumer Advocacy was founded as an association of mainly hospital-based patient advocates, without the autonomy characteristic of a profession: it was and is a member association of the American Hospital Association. These early hospital-based advocates believed some credentialing was important, but discussions foundered on the shoals of educational requirements credentialing would, of course, challenge the hegemony of the hospital as employer. They could not agree.^{[citation needed]}

Ruth Ravich a founder of the pioneering patient advocacy program at Mt. Sinai Hospital in New York City, and some of her colleagues, decided to deal with this impasse by separating education from the more controversial credentialing. They turned to an academic environment as a base for the development of graduate professional education independent of the hospital "industry". The resulting master's program in Health Advocacy at Sarah Lawrence College was founded in 1980. In 1981, Ravich called professionalism and its underlying credentialing requirements one of the major issues facing the national organization.^[15] Professionalism—and the educational requirements that underlie a profession—is still a subject of heated debate among patient and health advocates.^{[citation needed]}

In the history of every profession, there is a period in which a diverse group of practitioners work in various ways to "consolidate authority".^[16] For medicine, this period is best known for the Flexner Report (1910) that rated medical schools and gave a major boost to the AMA leadership and elite physicians who were trying to upgrade and standardize medical education. Educational standards for admission into the profession went along with earlier reorganization of the professional association—the AMA—to incorporate all practicing physicians (grandfathering in those who did not meet current standards), and a previous growth in state licensing that provided the legal authority for professional practice. For some professions consolidation never happens: nursing has spent a century debating educational standards, divided in identity, torn between being a labor force and a profession. In 1984, former Congressman (FL) Paul Rogers^[17] noted in his introductory essay to a volume on Advocacy in Health Care, "Advocacy in health care is a calling many of us have pursued—one way or another—for many years. And yet, it has not attained the full status of an independent profession."^[18]

By 2010, almost two dozen organizations had begun offering certificate programs, workshops and degrees in patient or health advocacy. Each year, more organizations, including colleges and universities offer such programs, satisfying the needs of the many people who are turning to careers in patient and health advocacy.^{[citation needed]}

As of early 2014, there is no nationally or internationally recognized certification or other credential for advocates. A group of interested and involved parties in the private sector of advocacy started its work in 2012 to develop certification standards.^{[citation needed]}

Education in health advocacy

As of 2014,^[update] approximately 25 organizations and universities offer coursework specific to health advocacy. These opportunities range from weekend workshops, to webinars, to year-long certificate programs, and one master's program.

Founded in 2000, the Center for Patient Partnerships at the University of Wisconsin began offering two graduate certificates in 2008: the "Graduate" certificate, which students pair with their graduate/professional studies in various disciplines (e.g. law, social work, nursing), and the "Capstone" certificate, in which post-baccalaureate students enroll before entering graduate/professional school (e.g. public health, medicine, public policy, health administration). Beginning fall 2012, CPP also offers a "Professional" certificate.^[citation needed]

Certification and licensing

Health advocates are not certified or licensed specifically as health or patient advocates because no national or international standards exist to define the work or the skills required. Some educational organizations that offer courses or certificates in health and patient advocacy claim they also provide certification, but those certificates are specific only to those programs.^{[citation needed]}

In 2012, a group of interested parties working in educational institutions, hospitals, and as individual health advocates came together to begin forming a credential or certification program for advocates.^[23]

Health Advocates Association

In spring 2006 a small group of independent health advocates came together in Shelter Rock, Long Island, New York to discuss whether there was a need for a professional association of health advocates.^{[citation needed]}

There were at least two specific events that precipitated the Shelter Rock retreat. One was a "Patient Advocacy Summit II" held in Chapel Hill, North Carolina, in March 2005. At this meeting, issues of credentialing, professionalization of advocates, development of competencies for the field, and tensions between "lay" and "professional" advocates arose repeatedly.^{[citation needed]}

The second precipitating event was a meeting at the Genetic Alliance conference in Washington D.C. in July 2005. Numerous members of the Genetic Alliance had requested a society or association of disease-specific advocates, offering disease-specific advocates a professional trade association, health insurance benefits and credentialing. The idea was subsequently abandoned by this group after a number of meetings via phone indicated hat there was too much diversity in advocate's understanding of what such an organization should entail. In addition, the advocates decided that there was too much difference between disease-specific advocates and 'health' advocates.^{[citation needed]}

The Shelter Rock group determined a need for a Health Advocates Association (proposed name). It would be an organization of individual health/patient advocates not of health advocacy organizations. The Association would be an open membership association with no standardized credentialing, but would adopt a statement of ethical guidelines, to which members would agree to adhere.^{[citation needed]}

The National Association of Healthcare Advocacy Consultants (NAHAC), was created in 2009, and is headquartered in Berkeley, California.^[24] Of the initial list of members, most were registered nurses and social workers.^{[citation needed]}

During the same time period (2007–2009) another organization, the Alliance of Professional Health Advocates,^[14] was established to support private patient advocates wishing to expand their knowledge, establish their credentials, and grow or expand their independent private health advocacy businesses. The organization has expanded its reach into many aspects of health advocacy including best business and ethical practices of this budding career. Each year the Alliance awards excellence in private health advocacy with the H. Kenneth Schueler Patient Advocacy Compass Award, an award named after H. Kenneth Schueler, one of the first health advocates to establish a private practice in the United States.^[25]

In Australia, both patient and disability advocacy are becoming common through groups like Patient Advocates Australia and Disability Health Advocates Australia.^{[citation needed]}

See also

• Breast cancer advocacy
• Patient advocacy
• Patient participation

References