Research Priorities in Developing Quality Measures for Persons with Disabilities
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
- 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
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
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
- Explore potential algorithms using ICD-10-CM to conduct research relating to
persons with disabilities using administrative data after coding system changes mid-decade.
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