Who Should Use the Toolkit
The links below provide targeted information for a specific audience or stakeholder. By clicking on any one of the links (e.g., CEO, clinicians, etc.) you can access all the items in the table of contents. However, we designed the Toolkit so you can look at information targeted specifically to your role or needs within your organization quickly.
Chief Executive Officer
Health care leaders are charged with advancing and managing individual organizational priorities. As hospitals and health care organizations work toward serving diverse populations, leaders must recognize the importance of understanding the unique characteristics of the communities they serve. Efforts to improve health care delivery require working with key staff. Leaders can be most effective by helping others develop the abilities and tools to create the best responses to problems and opportunities.
create the best responses to problems and opportunities.
Improving the quality of care for all patients and eliminating health care disparities are central challenges facing our health care system. As emphasized by two Institute of Medicine reports (Crossing the Quality Chasm and Unequal Treatment), the need for better data about patients' race, ethnicity, and primary language is critical. The section links at left provide information to hospital and health system leaders about collecting race, ethnicity, and primary language information from patients.
Legal Affairs Department
The law permits health care organizations to collect race, ethnicity, and primary language data from patients for quality improvement purposes. For example, the collection of race, ethnicity, and primary language data is permitted under Title VI of the Civil Rights Act of 1964. Additionally, the collection and assessment of information about the communication access needs of individuals with a sensory disability promotes compliance with Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act.
The ultimate goal for collecting information about patient's race, ethnicity, and primary language is to improve the quality of care for all patients. Evidence indicates that quality improvement efforts, when linked to demographic data such as race and ethnicity, can improve quality of care and reduce health care disparities. These data can be linked to assess technical quality (clinical measures) and service quality (wait times, patient experience of care) within your health care organization. The section links at left provide background information and tools (questionnaires) to help hospitals assess their current practices for collecting race, ethnicity, language and disability data as well as surveys to determine whether complete and accurate information is being collected from patients once a systematic framework is implemented.
Doctors, nurses, and other health care practitioners are central to the functioning of health care systems and to societies as a whole. However, few societies have been as racially, ethnically, and culturally diverse as the United States, presenting challenges and opportunities. Each new wave of immigration provides a reminder of these challenges and opportunities.
In their individual encounters with patients, other clinical professionals who care for diverse populations need to incorporate knowledge about their patients' perceptions of illness and disease, belief systems, individual preferences, communication styles, and preferred language. In doing so, clinicians can provide the best possible care to their patients and equip them with appropriate resources.
The need for accurate data is critical so hospitals can target the resources clinicians need (interpreter services, patient educational materials, food, etc.) to provide quality health care to their patients. The links to the right in the blue sidebar provide background information about the importance of collecting information about patients' race, ethnicity, and language and about how to collect the data.
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.
- The toolkit provides
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.
- 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.
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.
- 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.
Patient registration/admission staff are often the first point of contact for many patients, and they are responsible for collecting information directly from patients or caregivers. Registration staff have expressed concern that asking patients to provide information about their race and ethnicity and other potentially sensitive information may alienate them. Our research and field work have shown that when registration staff are partners in the process, receive the training, which focuses on providing them with information regarding the reasons for collecting this information, how to ask patients and address their concerns, they feel comfortable asking for this information and patients respond positively as well. The links to the right in the blue sidebar provide information for registration/admission staff about asking patients to provide information about their race, ethnicity, sex, primary language and disability status and about how to ask for this information and respond to patients' concerns and questions.
Information Technology Department
The IT department and staff are key in implementing the framework for collecting patient race, ethnicity, and primary language data within a hospital or health system. IT staff can identify infrastructure capacity and needs and are best able to integrate the necessary elements of the framework (codes, fields, etc.) into existing systems or in modifying the systems that exist, if necessary. The most often asked questions or points of clarification for IT staff to consider include:
- Is it possible to incorporate the actual script (for asking the questions) on the registration screen so front-line staff can explain or provide the rationale for why they are asking patients to provide information about their race and ethnicity?
- Can a "declined" response category be added for those patients who do not want to answer this question and decline to do so (this is different than "unavailable")? Is it possible to flag these responses in different colors to make it easier for staff (e.g., "declined" indicates do not ask again and "unavailable" indicates ask again)?
- Do the order of the questions matter (i.e., race before ethnicity question or vice versa)? Some hospitals could not change the order on the registration screens.
- Will the old race/ethnicity data be purged or stored?
- Can modifications be made to the fields to match the OMB categories?
- Can a separate field for ethnicity be added (for those hospitals which only have a race field)?
- Will all registration staff (in the hospital and those off-site) see the same registration screens once modifications are made?
The links to the right in the blue sidebar provide different coding schemes for race and ethnicity data. The staff training link provides one example of a registration system that has incorporated the framework for data collection.
Nearly 52 million people---over 19% of the U.S. population---speak a language other than English at home. Health care providers from across the country have reported language difficulties and inadequate funding of language services to be major barriers to limited English proficient (LEP) individuals' access to health care and a serious threat to the quality of care they receive. Whether large or small, urban or rural, hospitals and health systems are encountering more and more patients with LEP.
A 2006 survey conducted by the Health Research and Educational Trust found that 63% of hospitals reported treating LEP patients either daily or weekly and an additional 17% reported seeing LEP patients at least monthly Seventy-nine percent (79%) of hospitals in the survey indicated that training on how to respond to patients and family members who do not speak English would facilitate providing language services. Though 66% of hospitals indicated that they maintain information about a patient's primary language in medical records, only 38% said that they maintain a database of patients' primary language that they could use to track changes over time or make decisions about how to allocating resources for language services in the hospital.
The Toolkit provides information about collecting primary language information from patients and family members. It also addresses collecting data and providing services for deaf and hard of hearing populations.
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