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

Activity: Lecture / PresentationAcademic


Aim: 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 an intellectual disability (ID) or a visual impairment (VI: low sighted or blind). Method: 36 adults participated (18-65 years old; M=42.2; SD=14.7; 47% female) of whom 20 with ID and 16 with VI. 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 & Spencer, 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 the care and lives of people with disabilities. They also expressed concerns and worries. Conclusion: 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.
Period5 Jul 20218 Jul 2021
Event titleIASSIDD: Value Diversity
Event typeConference
LocationAmsterdam, NetherlandsShow on map
Degree of RecognitionInternational