Patient advocacy
Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and caregivers. 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: safeguarding patients from errors, incompetence and misconduct; 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. Nurses can perform a de facto role of patient advocacy. Patients can advocate for themselves through self-advocacy and the ability for this self-advocacy can be learnt or improved through training. History . Patient advocacy in the United States emerged in the 1950s in the context of cancer research and treatment. In those early days of cancer treatment, patients and their families raised ethical concerns around the tests, treatment practices, and clinical research being conducted. For instance, they expressed concern to the National Institute of Health (NIH) about the cruelty of the repeated collection of blood samples (for blood marrow examination) and raised questions about whether this was more harmful than beneficial to the patient. Sidney Farber, a Harvard physician and cancer researcher, coined the term "total care", to describe the treatment of  children suffering from leukemia. Under total care, a physician "treated the family as a whole, factoring in its psychosocial and economic needs""," rather than focusing purely on physical health concerns. Previous researchers had dealt with concerns raised by families, because physicians emphasized patient physical health rather than the inclusion of bedside manners with the families. The practice of practice advocacy emerged to support and represent patients in this medico-legal and ethical discussion. The 1970s were also an important time in the USA for patient advocacy as the Patient Rights movement grew. As a major advocacy organization during the time , the National Welfare Rights Organization's (NWRO) materials for a patient's bill of rights influenced many additional organizations and writings, including hospital accreditation standards for the Joint Commission in 1970 and the American Hospital Association's Patient Bill of Rights in 1972.  The utilisation of advocates by individual patients gained momentum in the early 2000s in the USA, and Australia 10 years later, and the profession is now perceived as a mainstream option to optimise outcomes in both hospital and community based healthcare. Processes. Patient advocacy can work by Private advocacy. Private Advocates (also known as Independent Patient/Health /Health Care advocates) often work alongside the advocates that work for hospitals. 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 was started to provide broad support for advocacy. The Alliance of Professional Health Advocates was started to support the business of  being a private advocate. Proponents of private advocacy, such as Australian advocate Dorothy Kamaker and L. Bradley Schwartz, have noted that the patient advocates employed by healthcare facilities have an inherent conflict-of-interest in situations where the needs of an individual patient are at odds with the business interests of an advocate's employer. Kamaker argues that hiring a private advocate eliminates this conflict because the private advocate “…has only one master and very clear priorities.” L. Bradley Schwartz is the founder and president of GNANOW.org where he states, "Everyone employed by a health care company is limited to  what they can accomplish for patients and families. Hospital-employed patient advocates, navigators, social workers, and discharge planners are no different. They became health care professionals because they are passionate about helping people. But they have heavy caseloads and many work long hours with limited resources. Independent Patient Advocates work one-on-one with patients and loved ones to explore options, improve communication, and coordinate with overworked hospital staff. In fact, many Independent Patient Advocates used to work for hospitals and health care companies before they decided to work directly for patients." Marketing. Patient opinion leaders, also sometimes called patient  advocates, are individuals who are well versed in a disease, either as patients themselves or as caretakers, and share their knowledge on the particular disease with others. Such POLs can have an influence on health care providers and may help persuade them to use evidence-based therapies or medications in the management of other patients. Identifying such people and persuading them is one goal of market access groups at pharmaceutical and medical device companies. Greater National Advocates (GNA) Organizations. Professional groups. Greater National Advocates is a non-profit organization with a goal to wake up the nation to the lifesaving  benefits of Independent Patient Advocacy and provide patients and loved ones with immediate online access to a trusted network of qualified practitioners. GNA uses fact-based media to spread awareness and steer patients and their loved ones to GNANOW.org where they can learn more and find the professional support they need. Center for Patient Partnerships. Founded in 2000, the interprofessional Center for Patient Partnerships (CPP) at University of Wisconsin–Madison offers a health advocacy certificate with a focus on either patient advocacy or system-level health policy advocacy. The book chapter "Educating for Health Advocacy in Settings of Higher Education  describes CPP's pedagogy and curriculum. Government agencies. United States. In the United States, state governmental units have established ombudsmen to investigate and respond to patient complaints and to provide other consumer services. 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. Self-advocacy. Communication skills, information seeking skills 	Patient advocacy
15693209	and problem solving skills were found to correlate with measures of a patients ability to advocate for themselves. Conceptualizations of the qualities have defined self-knowledge, communication skills, knowledge of rights, and leaderships as components of advocacy. A number of interventions have been tried to improve patients effectiveness at advocating for themselves. Studies have found peer-led programs where an individual with a condition taught their interview skills where effective in improving self-advocacy. Writing interventions where people with conditions were taught to and practiced writing essays advocating for themselves were shown to improve self-advocacy. Nurse advocacy. The American 	Patient advocacy
15693210	Nurses Association (ANA) includes advocacy in its definition of nursing: Nursing is the protection, promotion, and optimization of health and abilities, prevention of illness and injury, facilitation of healing, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, groups, communities, and populations. 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: Several factors can lead a patient to use nurses for advocacy including; impairments in their ability to express wishes such as die  to speech impairments or limited consciousness; lack of independence due to illiteracy, sociocultural weakness; or separation from friends or family caused by hospitalization. Nurses are more able to advocate if they are independent, professionally committed, and have self-confidence as well as having legal and professional knowledge, as well as knowing a patients wishes. The act of patient advocacy improved nurses sense of professional well-being and self-concept, job motivation and job satisfaction, and enhances the public image of nurses however advocating for a patient could have social consequences. Conflict of interests between a nurse's perceived professional responsibilities  and their responsibilities to the patient can be a barrier to advocacy. Additionally, a nurse is concerned about all of the patients they care for rather any individual patient. Gadow and Curtis argue that the role of patient advocacy in nursing is to facilitate a patients informed consent through decision making, but in mental health nursing there is a conflict between the patients right to autonomy and nurses' legal and professional duty to protect the patient and the community from harm, since patients may experience delusions or confusion which affect their decision making. In such instances, the nurse may engage  in persuasion and negotiation in order to prevent the risk that they perceive. Relationship to pharmaceutical industry. Some patient advocacy groups receive donations from pharmaceutical companies. In 2015, 14 companies donated $116 million to patient advocacy groups. A database identifying more than 1,200 patient groups showed that six pharmaceutical companies contributed $1 million or more in 2015 to individual groups representing patients who use their drugs, and 594 groups in the database received donations from pharmaceutical companies. Fifteen patient groups relied on pharmaceutical companies for at least 20 percent of their revenue in the same year, and some  received more than half of their revenue from pharmaceutical companies. Recipients of donations from pharmaceutical companies include the American Diabetes Association, Susan G. Komen, and the Caring Ambassadors Program.