Authors

• Finnish Innovation Fund Sitra
• Hyry, Jaakko (TNS Gallup Finland)

Keywords

exercise (physical activity), health policy, health professionals, health services, medical ethics, science policy, scientific research, social services, trust

Abstract

This survey charted Finnish citizens' as well as social and healthcare service professionals' attitudes and views concerning secondary use of health and social care data in research and development of services.

The study contained two target groups: (1) persons who suffered or had a close relative or acquaintance who suffered from one or more chronic conditions, diseases or disorders, and (2) social and healthcare service professionals.

First, the respondents' opinions on the reliability of a variety of authorities and organisations were examined (e.g. the police, Kela, register and statistics authorities, universities) as well as trust in appropriate handling of personal data. They were also asked which type of information they deemed personal or not (e.g. bank account number and balance, purchase history at a grocery store, web browsing history, patient records, genetic information, social security number, phone number). They were asked to evaluate which principles they considered important in handling personal health data (e.g. being able to access one's personal data and to have inaccurate data rectified, and being able to restrict data processing), and the study also surveyed how interested the respondents were in keeping track of the use of their health data, and how willing they would be to permit the use of anonymous health data and genetic information for a variety of purposes (e.g. medicine and treatment development, development of equipment and services, and operations of insurance companies).

Next, it was examined whether the respondents kept track of their physical activity with a smartphone or a fitness tracker, for instance, and if they would be willing to permit the use of anonymous data concerning physical activity for a variety of purposes. In addition, the respondents' attitudes were charted with regard to developing medicine research by combining anonymous health data and patient records with other data on, for instance, physical activity, alcohol use, grocery store purchase history, web browsing history, and social media use. The study also examined the willingness to permit access to personal health data for social and healthcare service professionals in a service situation, as well as for social and healthcare authorities and other authorities outside of a service situation.

Finally, it was charted how important the respondents deemed different factors relating to data collection (e.g. being able to decide for which purposes personal data, or even anonymous data, can be used, and increasing awareness on how health data can be utilised in scientific research). The reliability of a variety of authorities and organisations, such as social welfare/healthcare organisations, academic researchers and pharmaceutical companies, was also examined in terms of data security and purposes for using data.

Background variables included, among others, mother tongue, marital status, household composition, housing tenure, socioeconomic class, political party preference, left-right political self-placement, gross income, economic activity and occupational status, and respondent group (citizen/healthcare service professional/social service professional).