Public views about involvement in decision-making on health data sharing, access, use and reuse: the importance of trust in science and other institutions

Background: Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Involving the public in health data governance can help to address this problem by imbuing data processing frameworks with societal values. This study assesses public views about involvement in individual-level decisions concerned with health data and their association with trust in science and other institutions. MethodsCross-sectional study with 162 patients and 489 informal carers followed at two reference centers for rare diseases in an academic hospital in Portugal (June 2019-March 2020). Participants rated the importance of involvement in decision-making concerning health data sharing, access, use, and reuse from "not important" to "very important". Its association with sociodemographic characteristics, interpersonal trust, trust in national and international institutions, and the importance of trust in research teams and host institutions was tested. Results: Most participants perceived involvement in decision-making about data sharing (85.1%), access (87.1%), use (85%) and reuse (79.9%) to be important or very important. Participants who ascribed a high degree of importance to trust in research host institutions were significantly more likely to value involvement in such decisions. A similar position was expressed by participants who valued trust in research teams for data sharing, access, and use. Participants with low levels of trust in national and international institutions and with lower levels of education attributed less importance to being involved in decisions about data use. Conclusion: The high value attributed by participants to involvement in individual-level data governance stresses the need to broaden opportunities for public participation in health data dThis work was funded by FEDER through the Operational Programme for Competitiveness and Internationalisation and national funding from the Foundation for Science and Technology—FCT (Portuguese Ministry of Science, Technology and Higher Education) (Ref. POCI-01–0145-FEDER-032194), under the project Public and patient involvement in health data governance: a people-centred approach to data protection in genetic diseases (Ref. FCT PTDC/SOC-SOC/32194/2017) and the Unidade de Investigação em Epidemiologia—Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (Ref. UIDB/04750/2020), Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR) (LA/P/0064/2020), the individual contract grant DL57/2016/CP1336/CT0001 (CF) and the individual contract grant IF/01674/2015 (SS)

Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals

Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associated factors. The three participant groups expressed significantly different views. The majority of patients (84.3%) and informal carers (87.4%) selected the discovery of a cure for untreatable diseases as the most important benefit. In contrast, most healthcare professionals revealed a preference for the development of new drugs and treatments (71.4%), which was the second most selected benefit by carers (48.3%), especially by the more educated (OR (95% CI): 1.58 (1.07–2.34)). Lack of security and control over information access and the extraction of information exceeding research objectives were the two most often selected risks by patients (72.6% and 50.3%, respectively) and carers (60.0% and 60.6%, respectively). Conversely, professionals were concerned with genomic data being used to discriminate citizens (68.3%), followed by the extraction of information exceeding research objectives (54.0%). The latter risk was more frequently expressed by more educated carers (OR (95% CI): 1.60 (1.06–2.41)) and less by those with blue-collar (OR (95% CI): 0.44 (0.25–0.77) and other occupations (OR (95% CI): 0.44 (0.26–0.74)). Developing communication strategies and consent approaches tailored to participants’ expectations and needs can benefit the inclusiveness of genomics research that is key for patient-centred care.FEDER through the Operational Programme for Competitiveness and Internationalisation and national funding from the Foundation for Science and Technology—FCT (Portuguese Ministry of Science, Technology and Higher Education) (Ref. POCI-01–0145-FEDER-032194), under the project Public and patient involvement in health data governance: a people-centred approach to data protection in genetic diseases (Ref. FCT PTDC/SOC-SOC/32194/2017) and the Unidade de Investigação em Epidemiologia—Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (Ref. UIDB/04750/2020), Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR) LA/P/0064/2020), the individual contract grant L57/2016/CP1336/CT0001 (C.d.F)