Aineiston nimi

Secondary Use of Health and Social Care Data 2016

Aineistonumero

FSD3132

Pysyvä tunniste

urn:nbn:fi:fsd:T-FSD3132

Aineiston laatu

Kvantitatiivinen aineisto

Tekijät

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

Sisällön kuvaus

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).

Asiasanat

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

Tieteenala/Aihealue

• Medical and health sciences (OKM:n tieteenalaluokitus)
• Health care services and policies (CESSDAn aihepiiriluokitus)

Sarja

Individual datasets

Jakelija

Finnish Social Science Data Archive

Käyttöoikeudet

The dataset is (B) available for research, teaching and study.

Kerääjät

• TNS Gallup Finland

Tuottajat

• Finnish Innovation Fund Sitra

Ajallinen kattavuus

2016

Aineistonkeruun ajankohta

2016-06-21 – 2016-06-28

Maa

Finland

Kohdealue

Finland

Havaintoyksikkötyyppi

Individual

Perusjoukko/otos

Finnish citizens aged 15 - 79 residing in Finland

Tutkimuksen aikaulottuvuus

Cross-section

Otantamenetelmä

Probability: Multistage

The data were collected as an internet survey via TNS Gallup Channel. The sample was formed with a multistage stratified sampling resulting in a fixed sample.

Keruumenetelmä

Self-administered questionnaire: Web-based (CAWI)

Keruuväline tai –ohje

Structured questionnaire

Datatiedostojen kieli

Aineistopaketti voi sisältää samoja tiedostoja eri kielisinä.

Aineisto sisältää datatiedostoja seuraavilla kielillä: suomi.

Tietoarkisto kääntää kvantitatiivisia datatiedostoja englanniksi. Lisätietoja käännöspyynnön jättämisestä.

Datan versio

1.0

Painokertoimet

A weight variable (paino) was placed in the data to make distributions representative of the target population in terms of gender, age and region of residence.

Viittausvaatimus

The data and its creators shall be cited in all publications and presentations for which the data have been used. The bibliographic citation may be in the form suggested by the archive or in the form required by the publication.

Malliviittaus

Finnish Innovation Fund Sitra & Hyry, Jaakko (TNS Gallup Finland): Secondary Use of Health and Social Care Data 2016 [dataset]. Version 1.0 (2017-08-04). Finnish Social Science Data Archive [distributor]. https://urn.fi/urn:nbn:fi:fsd:T-FSD3132

Julkaisusta tiedottaminen

Notify FSD of all publications where you have used the data by sending the citation information to user-services.fsd@tuni.fi.

Varaumat

The original data creators and the archive bear no responsibility for any results or interpretations arising from the reuse of the data.

Julkaisut aineistosta

Hyry, Jaakko (2016). Hyvinvointitietoa koskeva asennetutkimus kansalaisille ja ammattilaisille. Espoo: TNS Gallup. http://www.slideshare.net/SitraHyvinvointi/hyvinvointitietoa-koskeva-asennetutkimus-kansalaisille-ja-ammattilaisille [viitattu 07.08.2017]

Juga, J., Juntunen, J. and Koivumäki, T. (2021) Willingness to share personal health information: impact of attitudes, trust and control. Records Management Journal, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/RMJ-02-2020-0005