Patient advocacy

Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient’s care.

Typical advocacy activities are the following: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on healthcare-related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organizations of health-care professionals, the educational world, and the medical and pharmaceutical research communities.

History

The origin of patient advocacy, in its current form, can be traced to the early days of cancer research and treatment, in the 1950s. It is part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia. "Total care signified that the cancer clinician treated the family as a whole," and "[t]he concept of Total Care subordinated clinical investigation to patient welfare…."^[1] This is "…because clinical investigation in the field of cancer may be carried out only as part of the total care of the patient."^[2] In the 1950s, clinicians recruited cancer patients for studies, and suspicion reigned at the National Institutes of Health (NIH) as researchers had to convince doctors and patients they were not harming people to conduct experiments. To properly represent patients in this medico-legal and ethical discussion, patient advocacy came into being.^[3]

Roles

Support

Patient advocacy activities often start as an offshoot activity from patient support groups, or are the primary role of patient interest groups. Their activities include, for a large part, support activities such as educating patients and carers to cope with the effects of the patient's disease. Patients and survivors suffer from the direct effect or the consequences their disease has on their quality of life. Family, especially family carers, and survivors, go through difficult phases of adaptation of their daily routine and lifestyle to accommodate the disease. The financial impact of ill health on the whole family should not be underestimated; the psychological effects of those changes have a very great impact.

Support activities may include: specialized nursing help to assist family carers to cope with the medical care of the patient or the survivor, cooperative purchases of health care materials, getting financial support for families, the choosing and use of health insurance plans, coping and preventing families from disappearing totally into poverty, and securing dietary support for patients or survivors. Other support activities of a patient advocate may be establishing a network of contacts: in the public sector (political and regulatory), in public and private health insurance, in the sector of medical service providers, with medical practitioners, and with pharmaceutical and medical research to provide patients with help in the care and management of their diseases. Patient advocates may also provide help with: where and how to obtain diagnosis, a second opinion and needed care, financial assistance, and support for family carers.

In recent years, many patient advocacy organizations have formed to help patients navigate the medical systems in the United States and elsewhere by teaching them medical navigation strategies: tools or practices that help patients to overcome typical road blocks within the health care system. However, medical navigation is no longer the only support role that medical advocacy groups tackle. Increasingly, patient advocacy support roles are broadening to help patients cope with the mental, social, and emotional effects of medical problems outside of the hospital, and often focus on strategies for increasing patient quality of life.

Education

Both the patients and the survivors of disease, and their carers, often are in need of education beyond treatment and physical rehabilitation. There is also a need to learn about the disease, the aftermath of the disease, the patient's limitations, and the limits of the care that family members can provide. Education can also assist patients and survivors to learn to live with the disease and come to terms with the restraints put on life(style). Carer education can help individuals to cope with the daily care of the patient/survivor (like injections) or with long-term effects (for instance to cope with epilectic seizures or with hyper- or hypoglycemia in diabetes patients).

Clinical liaison

An individual patient advocate may act as liaison between a patient and their health care provider. By professional background, individual patient advocates have often been case managers in the field of social work whose specialty is navigating the bureaucracy of large health plans or government-provided services, or former doctors, nurses, or other trained health care professionals, who have re-focused on helping patients in their decision-making. Patient advocacy services can also include transition assistance to older patients moving into assisted living and nursing homes, or such mundane but essential tasks as transportation, bill tracking, and payment assistance.

A patient advocate may be present for health care appointments and alert the health care provider to patient compliance issues. They may separately assist the health care provider and support staff with potential issues and communication. The patient advocate is responsible for maintaining communication with the patient and health care provider to help ensure patient understanding of procedures. By reducing unnecessary anxiety and fear and increasing patient compliance, this can result in a higher incidence of successful treatment. Generally, a patient advocacy contract that includes a release of medical information must be placed with each healthcare facility. A power of attorney for health care may be required by some institutions for a patient advocate to exchange confidential information.

The patient advocate may provide medical literature and research services to the patient, family, or health care provider. The patient advocate may also assist with family communication on issues arising from illness or injury. This may include further referral for care and support for both patients and families. The patient advocate has a responsibility for awareness of compliance, appropriateness, and coordination of care for the patient, such as oversight for potentially conflicting treatment modalities and medications. The patient advocate can ensure that questions about the appropriateness of treatment are promptly discussed with the patient's care provider, and that all treatments and concerns are promptly entered into the patient's health care record. The patient advocate is also responsible for reviewing the patient's health care record for correctness and explaining it to the patient. Creation and maintenance of an electronic log for the patient, that is available to health care providers in an electronic format, is another responsibility of the patient advocate, which may be of great benefit in subsequent urgent situations.

The patient advocate can also assist in resolving disputes between patients and their health care provider, as well as engaging in communications on behalf of the patient in the case of employment issues, engaging with the employer to achieve a mutually beneficial solution for the employer and the individual employee. Where applicable compliance standards are not met, the patient advocate may conduct liaison with corporate oversight, government agencies, or legal professionals, to further negotiate such issues on behalf of the patient and family.

It is the duty of a patient advocate to maintain patient privacy in compliance with local and national laws, treating all patient and family information as privileged and protected. This includes ensuring that health care provider communications are treated as highly confidential and privileged, whether or not those communications are specific to the patient, and that permissions to disclose information are negotiated carefully. It is also the duty of the patient advocate to follow any referrals for medical, financial, legal, administrative or other personnel to assure that the patient is always kept safe and well-informed, never abandoned, or misled during the process.

Public policy

More broadly, patient advocacy can include groups that develop policies and legislation to improve systems or processes for patients, such as the Alzheimer's Association, the British Diabetic Association, and the American Cancer Society. Such patient advocacy organizations are characteristically non-profit and focus on one aspect of health care or a specific disease. These organizations generally conduct fundraising and awareness campaigns and produce healthcare literature and information services. These organizations normally do not engage in the provision of clinical support or the conduct of liaison between patient and provider.

There are organizations, generally non-profit, that focus on specific diseases or aspects of health care. In such health advocacy organizations, patient advocates may sit on investigative and advisory panels to ensure that ongoing projects and those being considered for funding directly impact patients' lives, improving delivery of care and support for tertiary care. Patient advocates may also sit on finance boards to analyze cost containment and act as proponents for best practices, advocating better protection for provider and patient.

Private advocacy

As global healthcare systems started to become more complex, and as the role of the cost of care continues to place more of a burden on patients, a new profession of private professional advocacy began to take root in the mid-2000s. At that time, two organizations were founded to support the work of these new private practitioners, professional patient advocates. The National Association of Healthcare Advocacy Consultants^[4] was started to support the advocacy work itself. The Alliance of Professional Health Advocates was started to support the business of being a private advocate.^[5]

The biggest benefit to patients of working with a private advocate is the elimination of conflicts-of-interest. Whereas healthcare facilities (hospitals, large physician practices, including oncology), and insurers, often provide advocates to work with patients, those advocates must adhere to the rules of their organization. Private advocates work directly for patients and support only the needs of those patients.

Organizations

Professional groups

Some health benefit or employee assistance plans include patient advocacy services offered by third-party patient advocacy companies. Depending on the scope of services included, members or employees can get assistance with scheduling, quality review, care management, and bill negotiation or mediation for the portion of the bills that are the patient's responsibility. Such services are typically available to plan members or employees at little to no additional charge. A benefit of this type of arrangement is that independent third-party firms have fewer conflicts when advocating for members or employees as compared to advocates who are employees of health care providers or insurers.

The National Patient Advocate Foundation is a non-profit organization in the United States dedicated to “…improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.”^[6] The National Patient Advocate Foundation was founded simultaneously with the non-profit Patient Advocate Foundation, “…which provides professional case management services to Americans with chronic, life-threatening and debilitating illnesses.”^[7]

The Alliance of Professional Health Advocates (APHA) is an international membership organization for private, professional patient advocates, and those who are exploring the possibility of becoming private advocates. It provides business support such as legal, insurance and marketing. It also offers a public directory of member advocates called AdvoConnection.^[5] Following the 2011 death of Ken Schueler — a charter member of the APHA, described as “the Father of Private Patient Advocacy” — the organization established the H. Kenneth Schueler Patient Advocacy Compass Award. The award recognizes excellence in private practice including the use of best practices, community outreach, support of the profession and professional ethics.^[8]

Training and education

There is currently no accredited certification or licensing for patient advocacy in the United States, the United Kingdom, or thus far in any other country. As of summer 2015, approximately 34 organizations and universities across the United States offer coursework specific to patient advocacy. These opportunities range from weekend workshops, to online study, to year-long certificate programs, and one master's program in Health Advocacy at Sarah Lawrence College.^[9] Patient advocates are individually responsible for self-education concerning the general business of medicine, HMO rules, and local institutional changes to compliance articulation and implementation, as well as following relevant legislative changes.

Center for Patient Partnerships

The interprofessional Center for Patient Partnerships (CPP) at University of Wisconsin–Madison offers three certificates in Consumer Health Advocacy.^[10]

Founded in 2000, the Center for Patient Partnerships began offering two graduate certificates in 2008: the “Graduate” certificate in which graduate 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 in fall 2012, CPP offered a noncredit Professional certificate. CPP's learning experience is grounded in service learning; students learn by providing advocacy to patients with life-threatening and serious illness.^[11] Consumer Health Advocacy certificate students gain fluencies in patients’ experiences in the health care system and the interplay between individual and system level advocacy. The book chapter “Educating for Health Advocacy in Settings of Higher Education” describes CPP's pedagogy and curriculum.^[12]

Admitted students may enroll for graduate credit or noncredit, and pursue the program either on-campus, online, or in a blended format. Graduates of the Consumer Health Advocacy Program incorporate the patient-centered perspective and advocacy principles into their work in the healthcare, non-profit, and government sectors. Alumni work at such places as: the Centers for Disease Control and Prevention, the Food and Drug Administration, Veterans Affairs, Wisconsin Judicare, After Breast Cancer Diagnosis, various hospital systems, and private law firms.

Government agencies

In the United States, state governmental units have established ombudsmen to investigate and respond to patient complaints and to provide other consumer services. In New York, for example, the Office of Patient Advocacy^[13] within the New York State Office of Alcoholism and Substance Abuse Services (OASAS)^[14] promotes care in OASAS-certified programs by protecting patient rights and ensuring that services are delivered consistent with regulations and expected standards. This office helps people in treatment, or their families, by answering questions and addressing problems that cannot be resolved by the programs themselves. It also advises health care professionals about issues concerning patient rights, treatment services and accepted standards. Likewise, in California, the Office of the Patient Advocate (OPA), an independent state office established in July 2000 in conjunction with the Department of Managed Health Care, is responsible for the creation and distribution of educational materials for consumers, public outreach, evaluation and ranking of health care service plans, collaboration with patient assistance programs, and policy development for government health regulation. Such state government offices may also be responsible for intervening in disputes within the legal and insurance systems and in disciplinary actions against health care professionals. Some hospitals, health insurance companies, and other health care organizations also employ people specifically to assume the role of patient advocate. Within hospitals, the person may have the title of Ombudsman or Patient Representative.

Nursing and advocacy

Health care workers such as nurses and social workers, who are in close contact with the patient, often identify themselves with the role of patient advocate. However, there are potential conflicts of interest between their assumed advocacy role and their role as care practitioners, as well as their position as an employee of the care provider in such situations.^[15]

Nonetheless, the American Nurses Association (ANA) includes advocacy in its definition of nursing, which it describes as: "the protection, promotion, and optimization of health and abilities, prevention of illness and injury, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, communities, and populations."^[16]

Advocacy in nursing finds its theoretical basis in nursing ethics. For instance, the ANA's Code of Ethics for Nurses includes language relating to patient advocacy:

• The nurse's primary commitment is to the patient, whether an individual, family, group, or community.
• The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient.^[17]

The stance the ANA defends is commendable, and beyond any doubt nurses are - within the confines of a medical care situation (whether it is in a hospital or similar setting or in residential care at home) - the patients' advocates in the interaction between patient, nurse and physician. In that respect the Code of Ethics should be read as an incentive for nurses to exercise control over the care, and defend the best possible quality of life for the patient.

However, in the larger world of medical care and different medical interests, nurses and other professional carers are a separate group with their particular interests that differ from the interests of patients and their family carers, but also from other medical practitioners, from their employers (the service providers) or from insurance, research and commercial interests in the subject matter of care for patients and survivors of diseases and sufferers chronic medical conditions.

See also

• Patient empowerment
• Health Advocacy
• Ombudsman
• Organizational Ombudsman
• Geriatric care management
• Patient opinion leader

References

1. Keating & Cambrosio 2012, p. 81.
2. Farber, Sidney; Toch, Rudolf; Sears, Edward Manning; Pinkel, Donald (1956). "Advances in chemotherapy of cancer in man". Advances in cancer research. 4: 4. PMID 13381606; quoted in Keating & Cambrosio 2012, p. 81.
3. Keating, Peter; Cambrosio, Alberto (2012). Cancer on Trial. Chicago, IL: University of Chicago Press. pp. 80-83. ISBN 9780226428918. OCLC 713181629.
4. http://www.NAHAC.com
5. "About APHA". The Alliance of Professional Health Advocates. Retrieved 6 July 2016.
6. "Mission Statement". National Patient Advocate Foundation. Retrieved 16 February 2015.
7. "Our History & Mission". Patient Advocate Foundation. Retrieved 16 February 2015.
8. "The H. Kenneth Schueler Patient Advocacy Compass Award". The Alliance of Professional Health Advocates. Retrieved 19 February 2015.
9. "Master List of Health and Patient Advocacy Educational Courses, Programs and Organizations". Educational Programs for Health & Patient Advocates & Navigators. The Alliance of Professional Health Advocates.
10. "Consumer Health Advocacy Certificates: Overview & Choosing a Certificate". Center for Patient Partnerships. University of Wisconsin–Madison.
11. "Advocacy Services". Center for Patient Partnerships. University of Wisconsin–Madison.
12. Hurst, M; Gaines, ME; Grob, RN; Davis, S (2008). "Educating for Health Advocacy in Settings of Higher Education". In Earp, J; French, E; Gilkey, M. Patient Advocacy for Health Care Quality: Strategies for Achieving Patient-Centered Care. Jones and Bartlett. pp. 481–506. ISBN 9780763749613. OCLC 79256746.
13. http://www.oasas.ny.gov/pa/index.cfm
14. http://www.oasas.ny.gov
15. "Patient advocacy services ensure optimum health outcomes". Retrieved 2015-09-26.
16. ANA, making patient advocacy a fundamental part of nursing. Nursing's Social Policy Statement, Second Edition, 2003, p. 6 & Nursing: Scope and Standards of Practice, 2004, p. 7.
17. ANA. "Code of Ethics for Nurses - Provisions". Retrieved 2010-06-08.