Health Advocacy
by Marsha Hurst, Director, Health Advocacy Program, 1998-2007

Defining the Field.

Health advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public. Advocates support and promote the rights of the patient in the health care arena, help build capacity to improve community health and enhance health policy initiatives focused on available, safe and quality care.

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 or patient services programs of non-profit organizations. 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.

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.

Some make the 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 or depending on immediate context.

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 1970’s. 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). In 1970, the NWRO list of patients’ rights was incorporated into the accreditation standards (JCAH) for hospitals, and, interestingly, reprinted and distributed by the Boston Women’s Health Book Collective—authors of Our Bodies, Ourselves--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 (Rothman, 1997).

Patient advocacy, as a hospital-based practice, grew out of this patient rights movement: patient advocates (often called patient representatives) were needed to protect and enhance the rights of patients at a time when hospital stays were long and acute conditions—heart disease, stroke and cancer—contributed to the boom in hospital growth. Health care reformers at the time critiqued this growth by quoting Roemer’s Law, a built hospital bed is a bed likely to be filled. (Roemer, 1961) And more radical health analysts coined the term “health empires” (Ehrenreich and Ehrenreich, 1971) to refer to the increasing power of these large teaching institutions that linked hospital care with medical education, putting one in the service of the other, arguably losing the patient-centered focus in the process. It was not surprising, then, that patient advocacy, like patient care, focused on the hospital stay, while health advocacy took a more critical perspective of a health care system in which power was concentrated on the top in large medical teaching centers and a dominance of the medical profession. (Starr, 1984; Freidson, 1970)

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 (de Tocqueville). They were activists in social movements and voluntary associations including civic organizations, women’s associations and labor organizations, and in the early disease-specific non-profits like the American Cancer Society (founded as the American Society for the Control of Cancer in 1913) or the March of Dimes (founded as the National Foundation for Infantile Paralysis in 1938). In the early part of the 20th century these advocates came to their work through other professional routes, often as social workers, attorneys, public health nurses or doctors. They were the Progressive era “new women” of Hull House and the Children’s Bureau, the American Association for Labor Legislation, leaders of the movement in 1919 for national health insurance, the nurses who worked with Lillian Wald to advocate for indigent health care through Visiting Nurse Services (1893), or with the Maternity Center Association (1918) to advocate for maternal and infant care for poor immigrants. They obtained their professional education in other disciplines and then applied it to health.

Health advocacy also has 20th century roots in community organizing around health hazards in the environment and in the workplace. The Love Canal Homeowners Association, for example, was founded in 1978 by Lois Gibbs and others concerned about the high rate of cancer and birth defects in the community. These grass roots advocates often begin with a concern about perceived “clusters” of disease. The Newtown Florist Club on the south side of Gainesville, Georgia was founded by women who pooled their money to buy wreaths for funerals in their community; in the 1980’s they began to recognize that there were “far too many deaths due to cancer and lupus in the neighborhood. ‘That put us on a wonder,’” said one resident, and now their advocacy includes toxic tours of the community (Spears, 1998). Health disparities and issues of environmental justice are often the focus of advocacy for low income and minority urban residents, and like West Harlem Environmental Action (WE ACT), their advocacy for environmental justice encompasses health concerns.

Recently disease specific advocacy and environmental health advocacy have come together, most noticeably in the adoption by advocates of the “precautionary principle,” Some breast cancer advocacy groups in particular, argue that “prevention is the cure,” when it comes to untested exposures that could be carcinogenic. (See Rachel’s News for combined environmental and health advocacy information).

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.

Ruth Ravitch 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, Ravitch called professionalism and its underlying credentialing requirements one of the major issues facing the national organization. (Ravitch, 1981) Professionalism—and the educational requirements that underlie a profession—is still a subject of heated debate among patient and health advocates.

In the history of every profession, there is a period in which a diverse group of practitioners work in various ways to “consolidate authority.” (Starr, 1982). 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 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.”

Health Advocates Association.

In spring 2006 a small group of 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.

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 of 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.

The second precipitating event was a meeting at the Genetic Alliance conference in Washington D.C. in July of 2005. Numerous members of the Genetic Alliance had requested a society or association of health advocates, to be both an umbrella organization, offering ‘lay advocates’ benefits and networking, as well as a resource connection for training opportunities, and a survey of interested GA members confirmed that interest.

The Shelter Rock group confirmed the need for a Health Advocates Association (proposed name). It would be an organization comprised 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. [Comments, suggestions or request for updates as the Health Advocates Association develops should be e-mailed to Maggie Hoffman or Marsha Hurst.]

• de Tocqueville, Alexis (1945) Democracy in America, Vol. II, Chapter V. New York: Books.
• Ehrenreich, John and Barbara. (1971) The American Health Empire: Power, Profits and Politics. New York: Vintage.
• Freidson, Eliot. (1970) Professional Dominance. Chicago: Aldine.
• Ravitch, Ruth. “Where Have We Been?” Speech. 10th Annual Meeting and Conference of the National Society of Patient Representatives [Conference]. Detroit: 21 October 1981.
• Rogers, Paul G. (1986) Milestones in Public Interest Advocacy. In Marks, Joan (Ed.) Advocacy in Health Care: The Power of a Silent Constituency. (1-7) Clifton: Humana Press
• Roemer, M.I. "Bed supply and hospital utilization: a natural experiment." Hospitals. 1961 Nov 1;35:36-42.
• Rothman, David (1997) Beginnings Count. New York: Oxford University Press
• Spears, Ellen (1998). The Newtown Story: One Community’s Fight for Environmental Justice. Atlanta: The Center for Democratic Renewal and the Newton Florist Club.
• Starr, Paul (1982) The Social Transformation of American Medicine. New York: Basic Books.