Using routine care data: Opinions and beliefs by people with intellectual or visual disabilities

Background: In formal care for people with disabilities, data are routinely collected such as on physical, psychological, and practical characteristics, which could be a source of insights for improving care practices. With regard to the governance over care data for research, this study collected the opinions and experiences on this topic from people with intellectual disabilities or visual impairment (low sighted or blind). Method: 36 adults took part (18-65 years old; M=42.2; SD=14.7;47% female) of whom 20 with intellectual disability and 16 with visual impairment. 18 of the interviewees were from England, the United Kingdom, and 18 were from the Netherlands. Opinions and beliefs were assessed with a semi-structured interview and data were analysed inductively using the Framework approach (Ritchie & Spen-cer, 1994). Results: People from both countries and both disability groups in general believed that using and sharing routinely collected care data, which they considered their own, would be important to improve thecare and lives of people with disabilities. They also expressed con-cerns and worries. Conclusions: Benefits, risks, and issues of ownership need to be taken into account in research with routinely collected care data. Implications for data governance are discussed.