Health Advocacy
Encyclopedia
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.
(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. (Starr, 1984)
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. (See Rachel's News for 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. This model has evolved into a growing industry and is now the standard adovcay groups.
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.
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. 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". 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."
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.
The second precipitating event was a meeting at the Genetic Alliance
http://www.geneticalliance.org 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 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.
A new association, the National Association of Healthcare Advocacy Consultants (NAHAC) http://www.nahac.com, has recently been created, headquartered in Berkeley, California http://sev.prnewswire.com/health-care-hospitals/20090730/SF5425430072009-1.html. The association is having its third anual conference in November 4th & 5th 2011. Of the initial list of members, most are registered nurses and social workers. The planned conference topics include certification and credentialing for this new field.
Patient representatives, ombudsmen, educators, care managers
Geriatric care management
Geriatric care management is the process of planning and coordinating care of the elderly and others with physical and/or mental impairments to meet their long term care needs, improve their quality of life, and maintain their independence for as long as possible...
, 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 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 OrganizationNational Welfare Rights Organization
The National Welfare Rights Organization was an American activist organization that fought for the welfare rights of people, especially women and children. The organization had four goals: adequate income, dignity, justice, and democratic participation. The group was active from 1966 to 1975...
(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
Our Bodies, Ourselves
Our Bodies, Ourselves is a book about women's health and sexuality produced by the nonprofit organization 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
American Hospital Association
The American Hospital Association is an organization that promotes the quality provision of health care by hospitals and health care networks through such efforts as promoting effective public policy and providing information related to health care and health administration to health care...
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. (Starr, 1984)
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
American Cancer Society
The American Cancer Society is the "nationwide community-based voluntary health organization" dedicated, in their own words, "to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and...
(founded as the American Society for the Control of Cancer in 1913) or the March of Dimes
March of Dimes
The March of Dimes Foundation is a United States nonprofit organization that works to improve the health of mothers and babies.-Organization:...
(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
Hull House
Hull House is a settlement house in the United States that was co-founded in 1889 by Jane Addams and Ellen Gates Starr. Located in the Near West Side of , Hull House opened its doors to the recently arrived European immigrants. By 1911, Hull House had grown to 13 buildings. In 1912 the Hull...
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
Lillian Wald
Lillian D. Wald was a nurse; social worker; public health official; teacher; author; editor; publisher; activist for peace, women's, children's and civil rights; and the founder of American community nursing...
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
Love Canal
Love Canal was a neighborhood in Niagara Falls, New York, located in the white collar LaSalle section of the city. It officially covers 36 square blocks in the far southeastern corner of the city, along 99th Street and Read Avenue...
, 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
Blue Veins
Blue Veins is based in Peshawar, North-West Frontier Province, Pakistan. It is a women's health advocacy group that has dedicated itself to providing medical information to poor and rural women in Pakistan....
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
Precautionary principle
The precautionary principle or precautionary approach states that if an action or policy has a suspected risk of causing harm to the public or to the environment, in the absence of scientific consensus that the action or policy is harmful, the burden of proof that it is not harmful falls on those...
". 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).
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. This model has evolved into a growing industry and is now the standard adovcay groups.
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.
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 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
Sarah Lawrence College
Sarah Lawrence College is a private liberal arts college in the United States, and a leader in progressive education since its founding in 1926. Located just 30 minutes north of Midtown Manhattan in southern Westchester County, New York, in the city of Yonkers, this coeducational college offers...
was founded in 1980. In 1981, Ravich called professionalism and its underlying credentialing requirements one of the major issues facing the national organization. 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". For medicine, this period is best known for the Flexner Report
Flexner Report
The Flexner Report is a book-length study of medical education in the United States and Canada, written by the professional educator Abraham Flexner and published in 1910 under the aegis of the Carnegie Foundation...
(1910) that rated medical schools and gave a major boost to the AMA
American Medical Association
The American Medical Association , founded in 1847 and incorporated in 1897, is the largest association of medical doctors and medical students in the United States.-Scope and operations:...
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 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
Genetic Alliance
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to improving health through the authentic engagement of communities and individuals. The organization was founded by Joan O. Weiss, a social worker, working with Victor A. McKusick, in 1986—four years before...
http://www.geneticalliance.org 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 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.
A new association, the National Association of Healthcare Advocacy Consultants (NAHAC) http://www.nahac.com, has recently been created, headquartered in Berkeley, California http://sev.prnewswire.com/health-care-hospitals/20090730/SF5425430072009-1.html. The association is having its third anual conference in November 4th & 5th 2011. Of the initial list of members, most are registered nurses and social workers. The planned conference topics include certification and credentialing for this new field.