Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.
BMC Public Health
; 24(1): 2317, 2024 Aug 26.
Article
in En
| MEDLINE
| ID: mdl-39187842
ABSTRACT
BACKGROUND:
Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management.METHODS:
Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich.RESULTS:
The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important.CONCLUSIONS:
The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Public Opinion
/
Citizen Science
Limits:
Adult
/
Aged
/
Female
/
Humans
/
Male
/
Middle aged
Country/Region as subject:
Europa
Language:
En
Journal:
BMC Public Health
/
BMC public health (Online)
Journal subject:
SAUDE PUBLICA
Year:
2024
Document type:
Article
Affiliation country:
Germany
Country of publication:
United kingdom