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[who?] 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 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.

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.

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 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 that 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.

The Shelter Rock group determined a 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.

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