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Participation in data generation and information sharing: are patients and carers willing to engage?


 
 
 Health systems are moving towards a personalisation of care. Personalised care relies on data-intensive research, which depends on active participation by citizens in data generation and information sharing. Collecting and sharing one's data for research can deliver several benefits. However, it also comes at a cost in time and effort that may burden different population subsets to varying degrees. This study aimed to assess patients' and carers' willingness to generate and share health data, and its associated factors, to inform the design of inclusive engagement strategies.
 
 
 
 A cross-sectional study was performed with 157 patients and 487 carers (participation rate=89.3%) followed at 2 rare diseases reference centres in Portugal (06/2019-01/2020). Participants were asked about willingness to collect their health data. Those who responded yes/maybe also reported, from 0 (not willing) to 4 (always willing), on willingness to share it for the following purposes: diagnosis/treatment, non-profit research and for-profit research related to their disease and to other diseases. Data were analysed using descriptive and inferential statistics.
 
 
 
 From 567 respondents, 42.7% are willing to collect their health data, 34.7% are unsure and 22.6% do not want to participate in data generation. More educated participants, with white-collar occupations, satisfied/very satisfied with their health and those with higher social trust levels are significantly more willing to engage in data collection (p < 0.05). Participants are less prone to share information for for-profit research on their disease (Median[P25-P75]: 3.0[2.0-4.0]) or others (Median[P25-P75]: 2.0[1.0-3.0]), in particular carers (p < 0.05).
 
 
 
 Participants are more willing to share information for diagnosis/treatment and non-profit research. Efforts to engage people in data generation and sharing should be directed towards disadvantaged groups to reduce biases related to skewed populations.
 
 
 
 Willingness to participate in data generation and sharing is influenced by social indicators. Engagement by less advantaged groups should be promoted to avoid biases related to skewed populations.
