Patient advocacy is a concept that most think they understand, but probably don't comprehend the scope.
In its simplest terms, patient advocacy regards any activity which ultimately benefits a patient. Using that definition, it can apply to caregiving for an individual patient, to groups that develop policies and advice that help patients, to government groups that develop legislation to improve systems or processes for patients.
Government Advocacy
There are a number of US government groups that help patients in the bigger picture.
- The US Department of Health and Human Services (HIPAA)
The HHS oversees federal government agencies that improve the health, safety and well-being of Americans.
- The National Institutes of Health
Part of the Department of Health and Human Services, the NIH is charged with conducting and supporting medical research.
- The Centers for Disease Control
Part of the HHS, the CDC is charged with protecting the health of Americans.
- The Agency for Healthcare Research and Quality
Also a part of the HHS, the AHRQ oversees research on health care quality, costs, outcomes and patient safety.
- The Food and Drug Administration
The FDA regulates various industries which focus on foods and medicines we eat, drink or otherwise ingest. It, too, is part of the HHS.
- The Institute of Medicine
The IOM is a component of the National Academies of Sciences and while most consider it a part of the government, it has the distinction of working outside the framework of the government to provide background for policy development.
Advocacy Groups (Not for Profit)
These groups may be familiar to you for a variety of reasons. If you or a loved one have suffered from a disease or condition, you may have sought information from one of them, such as the American Cancer Society, or the American Heart Association.
- Alzheimer's Association
- American Diabetes Association
- American Stroke Association
- Master List of Advocacy Groups from Google
- Master List of Advocacy Groups from Revolution Health
There are also organizations that lobby and/or advocate for patient safety, healthcare consumerism, and other big picture issues which benefit patients.
- The National Patient Safety Foundation
- The Institute for Healthcare Improvement
- National Patient Advocate Foundation
- Every Patient's Advocate
- DiagKNOWsis
- PULSE: Persons United Limiting Substandards and Errors
- Center for Medical Consumers
- Consumers Advancing Patient Safety (CAPS)
- Colorado Citizens for Accountability
- Patient Advocate Foundation
- American Association of Retired People
- Consumer's Union
- Reduce Infection Deaths (RID)
Advocacy Groups (for profit)
In recent years, a number of organizations have begun to offer services to patients that help them as individuals navigate their healthcare. These groups may be staffed by healthcare professionals, or perhaps financial advisors or lawyers, to help patients coordinate their care and funding that care.
Their services are often paid for by employers wishing to assist their employees in hopes of getting them back on their feet and returning to work more quickly. Others are willing to work directly with patients who have issues getting correctly diagnosed or treated.
Patient Advocates in Hospitals
If hospitals offer customer service, it is often through a staff person called a patient advocate. This person can be called upon by a patient or his family member when they run into problems that relate to care, or more often, payment for that care. These advocates are not trained in formal advocate training courses.
Hospital advocates often belong to the American Hospital Association (AHA) through their affiliation with a national group called the Society for Healthcare Consumer Advocacy. Patients often seek their help when they are frustrated or require assistance for everything from needing a ride home from the hospital, to needing a hospital bill explained.
A hospital's patient advocate can be invaluable; however, empowered patients recognize that this patient advocate draws a paycheck from the hospital. As such, she is often not the best person to help in a difficult situation.
Individual Patient Advocates
Like the for-profit advocacy groups, patient advocates in the form of healthcare assistants are in the early years of building an actual career to help patients in these ways. Not that patient advocates are new; in fact, many of them have worked as "case managers." The roots of case managers most often come from social work, and these advocates have been coordinating care for patients for many years.
In the past several years, however, there has been a shift in the way these professionals build their lists of services. Some are former doctors, nurses or other trained healthcare professionals who help patients through their decision-making. Others are good organizers and can provide transportation or even bill tracking and payment assistance. Still others provide transition assistance as older patients move into assisted living and nursing homes.
If you are interested in becoming a patient advocate, it's best to understand this scope of possibilities. You may also wish to start your own patient advocacy business.
