photo top HRET Disparities Toolkit
A toolkit for collecting race, ethnicity, and primary language information from patients.
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Who Should Use the Toolkit

Patients/Consumers

Patients should understand why they are being asked to provide information about their racial and ethnic background, sex, primary language and disability status. Providers do not want to alienate patients by asking these questions, so it is important to explain why the information is being collected and how it will be used ("to ensure that everyone receives the highest quality of care"). The section entitled Why Collect Demographic and Communications Data provides information about why collecting this data is important for providing patient-centered care and measuring the quality of care that everyone receives. Information about protecting privacy and involving members of the community in the process is also provided.

Resources for Information About Privacy and Confidentiality

The Institute for Ethics at the American Medical Association has built a toolkit for health care organizations to assess whether their policies, practices, and organizational culture are consistent with protecting patient privacy, including the federal Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.

  1. 1. The toolkit provides four self-evaluation instruments for health care organizations to use to assess their policies and practices for safeguarding patient privacy and confidentiality including a Practitioner Survey, Patient Survey, Policy Checklist, and Facility Evaluation Form. To obtain more information about the privacy toolkit, go to the Ethical Force Program.

  2. To access the report entitled "The Domain of Health Care Information Privacy: Protecting Identifiable Health Care Informational Privacy: A Consensus Report on Eight Content Areas for Performance Measure Development," go to the Consensus Report of the AMA.

  3. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance (NCQA) released a joint publication, Protecting Personal Health Information: A Framework for Meeting the Challenges in a Managed Care Environment (1998). The document makes several recommendations and addresses accountability; consent; educating patients and providers about privacy policies, procedures, rights, and responsibilities; technology; providing legislative support; and guiding research.

Other Resources

  1. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance (NCQA) released a joint publication, Protecting Personal Health Information: A Framework for Meeting the Challenges in a Managed Care Environment (1998). The document makes several recommendations and addresses accountability; consent; educating patients and providers about privacy policies, procedures, rights, and responsibilities; technology; providing legislative support; and guiding research.


  2. Georgetown University's Institute of Health Policy and Research is sponsoring the Health Privacy Working Group (HPWG). The HPWG has developed a set of principles for health privacy and issued a report entitled Best Principles for Health Privacy. The Health Privacy Project has prepared a practical, comprehensive guide to state health privacy laws. For more information, go to the Health Privacy Project.

For more information about the HIPAA Privacy Rule, including summaries, tools, and frequently asked questions, go to their Web site.

Look to the blue Links column to the right for helpful resources.





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