Patient's Bill of Rights
In 1997, President Clinton appointed an advisory commission to report on changes in the health care system and recommend measures to promote and assure health care quality and value, protecting consumers and health care workers in the process. He requested that they draft a "consumer bill of rights." By Clinton's executive order in 2000, the patient's bill of rights applies to federal employees; wrangling in the US Congress has prevented a meaningful patient's bill of rights from being extended to all Americans. This is an area of education for individuals and organizations involved in research and a potential avenue of advocacy as well.
In brief, the patient's bill of rights includes the following provisions:
- Consumers have the right to receive accurate, easily understood information, and some require assistance in making informed health care decisions about their health plans, professionals, and facilities.
- Consumers have the right to a choice of health care providers that is sufficient to ensure access to appropriate high-quality health care.
- Consumers have the right to access emergency health care services when and where the need arises.
- Consumers have the right and responsibility to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators.
- Consumers have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances.
- Consumers have the right to communicate with health care providers in confidence and to have the confidentiality of their individually identifiable health care information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.
- All consumers have the right to a fair and efficient process of resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.
- In a health care system that protects consumers' rights, it is reasonable to expect and encourage consumers to assume reasonable responsibilities. Greater individual involvement by consumers in their care increases the likelihood of achieving the best outcomes and helps support a quality improvement, cost-conscious environment.
These are just the summary statements each chapter has an extensive rationale and list of references and readings. You can see the full statement with references at the website of the US Office of Personnel Management.
The patient's bill of rights was prompted in part by concerns that health care insurance plans took too active a role in determining what care covered individuals received. This statement doesn't merely reinforce patient rights and reaffirm the importance of the doctor patient relationship, though. It also urges consumers to take an active role in their health care by living a healthy lifestyle as well as by taking an active role in their interactions with health care providers.
- Getting Needs onto the Research Agenda
- Educating Your Membership about Research
- Genetic Privacy
- Promoting Research on a Condition
- Funding Research by Others
- Barriers to Rare Disease Research
- Consumers and Researchers: Making It Work
- Benefits of Collaboration with Advocacy Organization Community
- Facilitating Quality Research
- Research Models
- Blood and Tissue Banks