Improving Health Care Quality Through Health Information Technology (IT) for People With Intellectual Disabilities

Individuals with intellectual disabilities (ID) have poorer continuity of care, fewer routine and preventive health services, and are at higher risk of poorly managed care than people who do not have ID. People with ID frequently are forced to rely on others, such as family caregivers, to ensure their compliance with recommended medical management and treatments, and face numerous obstacles navigating the health care system. 

The use of health information technology may address some of the unique needs of this population by improving their ability to track and monitor health data. This project evaluated the feasibility and usability of using the PHR-ID, a personal health record for adults with ID, with a group of caregivers who had an adult child participating in the Healthy Athletes Special Olympics (SO) program. This technology facilitates the electronic management of medical and health screen data collected at SO events, giving caregivers and health care providers access to longitudinal health data and alerts on health items needing action. The PHR-ID was formatted on a USB (universal serial bus) drive that caregivers are able to use on their computers.   

The specific aims of this project were to:

• Adapt and refine an Internet-based PHR for adults with ID to share Special Olympics Healthy Athletes medical and health screening data with caregivers and health care providers.
• Conduct a feasibility study to examine the usability and user satisfaction of the PHR-ID in sharing electronic health information derived from the Special Olympics Healthy Athletes screening program with caregivers and health care providers.

This project was conducted in two phases. Phase I developed and refined the online PHR-ID and Phase II evaluated it with a pre-post-intervention design using online surveys and semi-structured interviews. Users of the PHR-ID had access to their adult child’s health status, including clinical notes and results of Healthy Athletes screenings. In addition they had access to a Sports and Health Promotion section where caregivers could enter information on their child’s food intake, body hygiene, and physiological measures; as well as having the ability to update SO training and physical activity logs.

Participant use of the PHR-ID was limited over the course of the study. Of the 66 families who had agreed to participate, only 27 (41 percent) opened the PHR-ID one or more times. Six participants entered information into the Sports and Health Promotion section, with five entering health data such as blood pressure and medications. Only two of the family members shared the PHR-ID with their adult child’s clinical providers. 

Barriers to use were noted to be low interest, knowledge, and technical skills. The PHR-ID format as a USB drive created challenges for compatibility with families’ computers, as well as concerns from providers about accessing the data and potential for sharing computer viruses. Both families and providers recommended a Web-based PHR for the future. While the study team remains confident in this technology’s ability to improve the ability of caregivers of adults with ID to track and monitor health data, they recognize a need to improve the usability and adoption of this technology among the intended audience.