Talk:Patient advocacy

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Confused

The first sentence says "Patient advocacy is an area of lay specialization in health care concerned with patient education about the use of health plans and how to obtain needed care"

Is it supposed to say "lay specialization?" Just double checking. Thanks! Adamh4 (talk) 20:15, 24 April 2014 (UTC)

I thought the term "lay specialization" was a bit "churchy" and smacked of the truth that, even though some healthcare places change their names and structure, there is still quite a lot of influence on where a great deal of the money might still be coming from. Does that imply that a cleric of some sort would never be considered for such a role? Why not? — Preceding unsigned comment added by Happy Camper on Wiki (talk • contribs) 14:03, 21 August 2014 (UTC)

I think the term "lay specialization" is very accurate. Patient advocates are not necessarily medical (or broader health-care) professionals, in the sense that they are licensed MD, nurses, or other paramedic professionals. Their main caracteristic is that they represent patients and (home or family)carers and give a voice to those groups in different levels of the public debate --DerekvG (talk) 11:26, 14 October 2014 (UTC).

Removal of October 2014 merge tags

See identically named section at Talk:Health advocacy. —Shelley V. Adams ‹blame
credit› 15:52, 16 February 2015 (UTC)

Merge

I've made a note to myself: Merge Patient opinion leader into Patient advocacy. Any remarks? I shouldn't think this would be controversial. --Hordaland (talk) 05:08, 6 March 2015 (UTC)

• Don't merge - There's a significant difference in the emphasis within these roles: patient opinion leaders emphasize their role as patients; patient advocates emphasize their role as advocates for patients. Whereas the patient advocate's expertise is based in knowledge about how various sectors of the healthcare industry operate and interact, the patient opinion leader's expertise is based in personal experience interacting with the healthcare industry as a patient. —Shelley V. Adams ‹blame
  credit› 15:45, 7 March 2015 (UTC)

• Don't merge - Most patient advocates are not opinion leaders at all. In fact, they are outsiders who navigate patients through the system, not through leadership, rather taking routes that have not been known to work before. Every patient's journey through the system is different, so there is no way to lead when the path is unknown ahead of time. —Trisha Torrey ‹blame
  credit› (UTC)

Closing given the consensus not to merge. Klbrain (talk) 16:13, 14 August 2017 (UTC)

Material deleted 7 October 2017

I noticed that User:Neutrality removed a large amount of WP:UNSOURCED content yesterday. In light of the final edit summary,

… most or all of this might be OK, but it all needs citations to good references
— User:Neutrality 21:48, 7 October 2017

I thought it might be worthwhile to retain the material here and look for WP:RELIABLE sources, though some portions may also need to be rewritten in a more encyclopedic style. I have included wikilinks to relevant diffs and the article (sub)section where the material once appeared. —Shelley V. Adams ‹blame
credit› 16:33, 8 October 2017 (UTC)

Removed from section 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

See also: Health education and Health literacy

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.

Removed from subsection 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.

Removed from subsection 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.

Removed from section Organizations:

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. 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.

Removed from subsection Center for Patient Partnerships

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. Consumer Health Advocacy certificate students gain fluencies in patients' experiences in the health care system and the interplay between individual and system level advocacy.

Removed from the same subsection:

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.

Removed from section 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.

Removed from the end of the same section:

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.

 Editor note: Subsection headers in the quoted blocks above use {{Header simulation 3}} so they won't appear in the table of contents; any headers moved back to the article should use normal header formatting (e.g., ===Heading 3===). —Shelley V. Adams ‹blame
credit› 16:40, 8 October 2017 (UTC)

References

October 2017 partial merge proposal

The Health advocacy article contains information about advocacy for both health policy and individual patients. Since much of the latter duplicates content in this article, I propose splitting that content from Health advocacy and merging it into this article. —Shelley V. Adams ‹blame
credit› 17:08, 10 October 2017 (UTC)

I think a spliting content out of health advocacy is a good move. For clarity of other readers, it's important that advocating for a patients choice and rights is quite different from trying to make them healthy by telling them what to do! Talpedia (talk) 19:30, 21 January 2022 (UTC)

Just muttering about some slight complexity here. Patient advocacy organizations will engage in health advocacy to prevent the disease whose sufferers they represent. In some cases patient advocacy organizations can be more health advocacy organizations than patient advocacy organizations. Talpedia (talk) 22:18, 19 August 2022 (UTC)

Health advocacy

Having read a reasonable amount of public health literature I don't think health advocacy and patient advocacy are that related. Patient advocacy is "how can a patient make choices themselves" and health advocacy is closer to "how can we make patient's do what is good for them". Of course, there is an overlap in the middle in terms of "do patients adequately understand their options and health implications". Talpedia (talk) 10:10, 14 August 2022 (UTC)

How exactly does one get a patient advocacy when an unexpected situation happens? Instead of being rushed into surgery because the doctors are telling me my baby will die if I don't. Where does that ease of mind come into play? Not always is this an easy decision. Actually, this was one of the hardest decision's I ever had to make, but my daughter is alive, and that is all that matters.

https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_ffg.pdf

https://en.wikipedia.org/wiki/Patient_advocacy

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