On citizens controlling access to their health and social care data for direct care

A prototype Privacy Preferences software tool for citizens’ health and social care data was developed and evaluated with focus groups comprising a wide range of users. The primary purpose of the focus groups was to evaluate the acceptability and ease-of-use of the software tool for sharing data for direct care. Fictitious data, based on real scenarios, was used in the evaluations. A possible use for a future commercial development of the tool might be in a Health Information Exchange system supporting access to records held in provider systems. The outcomes of the evaluation were that younger adults with significant computing experience could understand and use the tool, but people with less computer experience and confidence needed support. One conclusion was that the tool is appropriate for the citizen/patient to explore their data and to prototype sharing preferences; however, the preferences should only be turned into permissions which actually control access to data by a care professional during a consultation. This is suggested by several potential problems, including: adverse effects to treatment and care; difficulties with authentication; and, on the part of the citizen/patient user, lack of medical knowledge, lack of capacity (maybe unrecognised), insufficient experience with computing devices, and deliberate misuse.