The last decade has witnessed a tremendous shift in health care management through the use of health information technology. Physicians are now mandated to use electronic health records (EHRs) to maintain Medicaid and Medicare reimbursement levels, and many are encouraged to use EHRs to share patients' data across multiple providers. An increasing number of clinicians and translational researchers are seeking to bank biospecimens from individuals with specific conditions in order to have ongoing access to data that can further critical disease discoveries. Preferences among individuals with intellectual and developmental disabilities (IDD) and their guardians regarding the research use of clinical records and data, including EHRs and other data (e.g., biospecimens), is the crux of this proposal. This project will assess the preferences of individuals with IDD and their guardians regarding the research use of clinical records and data. Using an innovative methodology traditionally used in health economics research-discrete choice experiments-we will quantify preferences to guide best practice in informed consent procedures for researchers who seek to use clinical records and data.
Using discrete choice experiment (DCE) methodology, we will explore preferences for the research use of clinical records and data among two specific subgroups of those with intellectual and developmental disabilities (IDD): those with known (fragile X syndrome) or suspected (autism spectrum disorders) genetic disorders. We will explore preferences of the individuals themselves as well as guardians of individuals with these conditions who have been determined to be decisionally impaired. Results from this study will inform ethical, legal, and social implications of research use of clinical records and data for individuals with IDD.
