Patient Advocacy Resources

Patient Advocacy: How to be an Empowered, Engaged, Equipped and Enabled Patient

Thanks to Disruptive Women - ebook. 

• About.com Patient Empowerment: Trisha Torrey author of You bet your life, The 10 Mistakes Every Patient Makes  a journalist survived a bout with a rare form of cancer prior to becoming an empowered patient advocate -lots of resources
• Association of Cancer Online Resources (ACOR) access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders.
• Center for Advancing Health (CFAH):  CFAH conducts research, communicates findings and advocates for policies that support everyoneʼs ability to benefit from advances in health science.
• Center for Medical Consumers:  Is committed to broadening public awareness about the safety and quality problems that pervade Americaʼs medical care. The Center is active in both nationwide and statewide efforts to reduce medical errors, report disclosure of physician conflicts of interest, improve the quality of medical care, and encourage public access to information about the comparative performance of doctors and hospitals.
• CNNʼs Empowered Patient:  Elizabeth Cohen presents her weekly stories about patients who stepped up in unusual ways to get the medical help they needed.
• Coalition for Patients Rights: The Coalition for Patientsʼ Rights consists of more than 35 organizations representing a variety of licensed health care professionals who provide a diverse array of safe, effective, and affordable health care services to millions of patients each year.
• Consumers Advancing Patient Safety (CAPS): Is a consumer-led nonprofit organization formed to be a collective voice for individuals, families and healers who wish to prevent harm in healthcare encounters through partnership and collaboration.
• The Empowered Patient Coalition: The Empowered Patient Coalition is dedicated to providing an unprecedented level of information, resources and educational support to the public. The Coalition is committed to promoting a culture of transparency, meaningful interaction and active participation that will allow patients and their advocates to assume a greater role in improving the safety and the quality of their health care.
• EmpowHer: EmpowHer is a website that seeks to provide information for women dealing with health problems and enables women to connect with others in a large peer-to-peer community. There also is information dealing with diet and general well-being.
• Every Patients Advocate: Every Patient's Advocate has one important purpose-to help patients learn everything they can about advocating for good health and medical care for themselves or their loved ones.
• Hospice Patients Alliance : has ten key questions for patient advocacy:
• The Informed Patient Institute:  The Informed Patient Institute (IPI) is an independent nonprofit organization that provides credible online information about health care quality and patient safety for consumers.
National Patient Advocate Foundation: Dedicated to improving access to health care through policy reform at the state and federal government levels.
Patient Advocate Foundation:  to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.
Revolution Health: Oftentimes, Patient Advocates are associated with particular diseases, such as the American Cancer Society or American Heart Association. A master list is found within the website of Revolution Health.
Society for Participatory Medicine: Is devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials