Eczema Patients’ Bill of Rights

Preamble

Patients and their care partners play integral and equally important roles in managing patients’ care and wellbeing. As eczema patients, we partner with providers, insurers, pharmaceutical companies, and other health professionals as a collaborative team that works together to improve our long-term health outcomes. We acknowledge and affirm our belief that we are the principal guardians and trustees of our health. We are patients and advocates.

We believe that eczema patients have the right to:

Be acknowledged and heard.

• We request others who make decisions about our health, welfare, education, and access to social services to educate themselves about eczema.
• We want our partners in the healthcare system to hear our concerns, acknowledge our priorities, and take us and our disease seriously.

Define what success means for us.

• As patients and consumers, we are empowered to seek care that advances our individual priorities and preferences, define the metrics of success in our care regimens, and work with providers and payers to achieve our individual goals.
• Like all U.S. health care consumers, we have the right to give or withhold consent, or to refuse care when we are uncomfortable with a medication or treatment option.
• We believe we are in control of the care we receive.

Access appropriate care.

• We support being able to access competent, knowledgeable professionals who are familiar with our disease, and change providers when the provider we have selected or to whom we are assigned is unwilling or unable to attend to our care needs.
• We believe the care we receive should be timely and geographically accessible, affordable, and coordinated. We should request education and support services from all of our partners.
• We support medically necessary care without unreasonable restrictions on utilization as specified in federal and state law.
• The standard of care we receive should include an accurate diagnosis, access to all health services essential to our wellness, including traditional allopathic medicine, behavioral and mental health services, and alternative medicine; incorporate the patient’s priorities; and track their experience with validated measures that facilitate standardized care and quality of life reporting.

Access Information.

• We support the right to make informed choices about the care we receive, ask questions and receive answers about the benefits and risks associated with any treatment option, and access our medical records.
• We believe we should be able to access information about the cost of our prescribed medications.

Advocate for ourselves and our communities.

• The Americans with Disabilities Act, Individuals with Disabilities Education Act, Fair Housing Act, and other laws give us the right to expect consideration and reasonable accommodation of our health care needs in housing, education, and employment, as well as in the health care system.
• We are empowered to question all decisions regarding our care and advocate for access to treatment options that we believe are most appropriate for us.
• We support the adoption of public policy positions by the government that support us as individuals and members of the eczema community.

These rights are balanced against our responsibilities as patients and members of the eczema community. We are responsible for:

• Treating our partners with respect and courtesy.
• Standing up for ourselves and our rights.
• Adhering to our care management plans.

We strive to define an expanded concept of “rights” that can serve as the foundation of a care paradigm which acknowledges an eczema patient’s role as a partner in care delivery and in which eczema patients bear shared responsibilities.

Presented to the Board of Directors for Adoption May 7, 2019.