Patients and family attitudes about clinical and research sharing of electronic clinical data

Purpose: To access the attitudes of service users about the sharing of health records for research and to foster collaboration between municipal health services and the specialist health services in Norway. Methods: Members (n≈2000) of the Norwegian mental health service users’ organizations (SUO’s), ADHD Norway, the Autism Association and the Tourette Association, representing Central Norway, participated in the study, (N=108, 5.4% response rate). Descriptive statistics were used to evaluate distributions of responses to the questionnaire. Results: Service users reported being aware that municipal health services collaborate with the specialist health service (62%), with mental health care in the specialist health service (57%), and child and adolescent psychiatric services (61%). A large proportion of individuals were aware of the benefits of sharing their health records (93%), have trust in the use of data by health authorities (81%), and were willing to share records to benefit fellow patients (84%). Personal experience (69%) and impressions from mainstream media (55%) had the most influential impact on users’ views of the Health Platform, an electronic health communication system. A majority of users had a negative perception of the Health Platform, even though some expect it to become a valuable tool in the future (50%). Conclusions: Service users are aware of and positive about benefiting others by sharing health records. They trust the health authorities, however, have negative attitudes about the Health Platform, apparently based on personal experiences and media influence. However, service users can see the potential usefulness of the Health Platform in the future.