: Adults with intellectual disabilities (ID) face enormous obstacles in receiving health care and navigating the health care system. The resultant poor continuity of care can lead to greater morbidity in persons with ID. Given their complex health needs and the extreme fragmentation of care faced by individuals with ID, additional intervention is necessary to improve continuity of care and the sharing of health information. Electronic, integrated Personal Health Records (PHRs) hold promise in helping reshape healthcare by sharing health data with their caregivers and providers in an automated, patient-centered fashion. However, there are currently no established Internet-based PHRs available that meet the needs of this vulnerable population. To address this problem, we propose to adapt and test an existing PHR that will specifically meet the needs of persons with ID. The PHR will build upon ongoing work by the Special Olympics International in conjunction with HealthOne Global, known as the Personal Health Record for Adults with Intellectual Disabilities, or PHR- ID. The study team includes the developers of PHR-ID, quality improvement and medical informatics experts, and health services and intervention researchers. During the first phase of the project, focus groups will be conducted to incorporate input from key constituency groups (e.g., health care providers, caregivers). This will refine and finalize the PHR-ID content for persons with intellectual disabilities. During the second phase, a 4-month feasibility study will be conducted to assess the usability, perceptions, and impact of the PHR-ID by caregivers and health care providers. Qualitative and quantitative analyses will examine the usability of the PHR-ID among 60 caregivers of adults with ID and their primary care physicians. Findings from the feasibility study will be disseminated via national and state consumer and provider organizations serving adults with intellectual/ developmental disabilities. Developing a personal health record for people with ID has the potential to help improve the quality of care received in a manner that is highly consistent with these individuals'values and priorities. The relative low cost and ease of dissemination of the PHR-ID will increase the public health impact on state and local agencies responsible for the health care of adults with ID. If the feasibility study is successful, a future R18 application will be submitted involving a multi-center randomized, controlled trial to examine the impact of the intervention on patient activation, provider and system-level management involving care for adults with ID. Poor quality of care may be an important risk factor for excess rates of morbidity in persons with intellectual/developmental disabilities (ID). Adults with ID, and their families, face enormous obstacles in seeking the kind of basic health care that many of us take for granted. Electronic Personal Health Records (PHRs) hold promise in helping reshape health care by shifting the ownership and locus of health records from being scattered across multiple providers to being longitudinal and patient-centered. To address this problem, we propose to adapt and test an existing PHR to fit the needs of persons with ID. The PHR will be built on the ongoing work of Special Olympics International in conjunction with HealthOne Global and is referred to in this application as the Personal Health Record for Adults with Intellectual Disabilities or PHR-ID.
Poor quality of care may be an important risk factor for excess rates of morbidity in persons with intellectual/developmental disabilities (ID). Adults with ID, and their families, face enormous obstacles in seeking the kind of basic health care that many of us take for granted. Electronic Personal Health Records (PHRs) hold promise in helping reshape health care by shifting the ownership and locus of health records from being scattered across multiple providers to being longitudinal and patient-centered. To address this problem, we propose to adapt and test an existing PHR to fit the needs of persons with ID. The PHR will be built on the ongoing work of Special Olympics International in conjunction with HealthOne Global and is referred to in this application as the Personal Health Record for Adults with Intellectual Disabilities or PHR-ID.
