Health Advocacy - History

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). 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.

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. And more radical health analysts coined the term "health empires" 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.

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. 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 1980s 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. 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.

In developing nations, groups such as Blue Veins may face additional difficulties getting their messages out.

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. Rachel's News is one example of such combined environmental and health advocacy information.

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 the services directly thereby resolving the issues associated with access to care and reimbursement through their employers.

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, were establishing private practices to provide those services to client-patients. A new organization, AdvoConnection, was founded to support those new private advocates, plus those considering such a career, with legal, insurance, marketing and other business advice.

The Visiting Nurse Associations of America (VNAA) is also a nonprofit association which is a health advocate for its nonprofit visiting nurse agencies and homehealth providers. The VNAA related to DC from Boston in 2008 to be able to be a strong health advocate for its members.