Research Priorities in Developing Quality Measures for Persons with Disabilities
Developing Quality of Care Measures for People with Disabilities: Summary of Expert Meeting
The final 45 minutes were spent asking each participant to specify briefly what would be his or her top priority for AHRQ's funding for research concerning quality of care for individuals with disabilities. As noted earlier, given the brevity of the meeting, the group did not have an opportunity to reach formal consensus about these priorities. Proposed priorities for research topics fell into the broad categories indicated by the headers below.
- Consider the full range of disabling conditions and develop approaches that accommodate the diversity and multidimensional attributes of disability.
- Take a life span perspective whenever possible, considering individuals across the life course from early childhood to old age.
- Recognize the developmental context when considering children.
- Consider health, wellness, and prevention perspectives whenever possible.
- Develop a set of quality measures specifically for persons with disabilities, rather than only applying general population quality measures to these individuals.
Health Information Technology and Electronic Medical Records
- Develop methods to automate and capture electronically information about various dimensions of disability. Include methods where patients self-report information about disability dimensions in EMRs.
- Develop methods to include new media information about patients in EMRs (see below).
Describing and Classifying Patients and Their Disability Dimensions
- Use new media to capture information about patients and their multiple disability dimensions. Examples include photographic and video images of patients, including patients functioning within their standard environments. Develop methods to characterize patients and their environments using these visual images.
- Devise methods building on ICF to capture information about patients, their environments, and patient-environment interactions. Create a taxonomy of person, environment, and person-environment units of observation.
- Examine implications of changes in disability dimensions over time.
- Identify methods for capturing information on people with rare disorders and learn more about their life courses and treatment responses.
- Work with the international community on development of ICD-11, which will apparently roll the ICF into its ICD framework (end date of work projected late decade).
Patient-Centeredness and Perceptions of Care
- Devise methods to capture patients' preferences for care and outcomes across and considering different disabilities. A critical subtopic involves preferences for end-of-life care. Another critical topic includes patients' perceptions of their health care needs, more generally.
- Develop a universal design-focused approach for capturing patients' experiences of care, across and considering different disabilities. Methods would consider patients' cultural and sociodemographic characteristics. Ensure that formats for survey administration are also universally accessible.
- Allow for patient self-management of chronic health conditions.
Health Care Providers and Delivery System Issues
- Identify implicit bias and other stigmatizing attitudes among clinicians toward different types of disabilities, and the contribution of these biases to patients' health care experiences and disparities in care.
- Identify and characterize the full range of barriers to care, across different disabilities and varying impediments.
- Include education of health care professionals about persons with disabilities and their care, in the face of potential biased attitudes and disparities in care.
- Develop collaborative care models, with patients and clinicians partnering to set goals and design care plans.
- Develop methods to assess and improve coordination of care.
- Examine how patient-centered medical home concepts and approaches apply to persons with disabilities.
- Explore development of post-marketing surveillance of drugs and devices that can capture disability information and analyze data for a disabled subpopulation.
- Include persons with disabilities in all analyses involving Medicare beneficiaries, unless there are compelling, nondiscriminatory human subject or scientific reasons to exclude them. Include persons with disabilities in all clinical trials or effectiveness evaluations, unless there are compelling justifications for their exclusion.
- Develop methods for using observational data to conduct outcomes and comparative effectiveness research for persons with disabilities.
- Devise methods for analyzing small numbers of cases.
- Develop methods for using survey data to identify persons with disabilities, as well as methods to ensure all Federal surveys capture persons with disabilities, including those who might require accommodations to complete the surveys.
- Assess costs and feasibility of implementing all methods targeted for widespread use.
- Explore potential algorithms using ICD-10-CM to conduct research relating to persons with disabilities using administrative data after coding system changes mid-decade.