Opinions and Beliefs of Adults with Intellectual Disabilities or Visual Impairment about Research with Routine Care Data

Research with routine care data (RCD) is not always a transparent process to the people receiving care for disabilities or impairment. This study aimed to understand the point of view on secondary use of care data for research from the people with visual or intellectual disabilities themselves. In total 36 participants from the UK and the Netherlands were interviewed (20 with intellectual disabilities, 16 with visual impairment). Transcripts were analysed inductively using the Framework Approach. Interview results showed that people from both countries and disability groups assumed that RCD research took place and saw potential contributions to care quality as grounds for legitimacy. Their themes of concern were about inaccuracy and threats to anonymity of data. Interviewees made suggestions for improving conditions under which RCD research can happen with informed consent. In addition to informing data governance policies of organisations serving people with disabilities, findings underscore the contribution that people with disabilities can make to data governance.