Background Personal health records were implemented with adults with learning disabilities (AWLD) to try to improve their health-care. Materials and Method Forty GP practices were randomized to the Personal Health Profile (PHP) implementation or control group. Two hundred and one AWLD were interviewed at baseline and 163 followed up after 12 months intervention (PHP group). AWLD and carers of AWLD were employed as research interviewers. AWLD were full research participants. Results Annual consultation rates in the intervention and control groups at baseline were low (2.3 and 2.6 visits respectively). A slightly greater increase occurred over the year in the intervention group 0.6 ()0.4 to 1.6) visits ⁄ year compared with controls. AWLD in PHP group reported more health problems at follow-up 0.9 (0.0 to 1.8). AWLD liked their PHP (92%) but only 63% AWLD and 55% carers reported PHP usage. Carers had high turnover (34%). Conclusions No significant outcomes were achieved by the intervention.

The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.

This article argues for the introduction of patient‐held health care records for people with learning disabilities. The evidence reviewed demonstrates that people with learning disabilities have more health care needs than other adults in society but receive less health care than others. The rationale for implementing hand‐held records is considered from three perspectives: a consumer point of view, an analysis of how personal health profiles can help to overcome existing barriers to health care and the existing evidence. The initial experiences of introducing personal health records are described.