Benefits and risks of health data reuse for healthcare providers: stakeholder perspectives from a qualitative interview study.

BACKGROUND

Reusing health data, for example for research into the quality of care or healthcare planning, has far-reaching potential. Current ethical discussions on developing health data platforms (e.g. the German Medical Informatics Initiative, MII) have primarily addressed patient-related benefits and risks of reusing this data. Less is known about the perspectives of healthcare providers, such as hospitals, that make health data available through these platforms. However, the risks they perceive and a resulting reluctance to share data, along with the lack of strategies for managing these risks, could significantly impede research with health data. In this exploratory qualitative study, we investigated the interests and risks relevant to healthcare providers in the secondary use of health data, and strategies to address these risks (pre-registration: https://osf.io/uxds ).

METHODS

We conducted online expert interviews (N = 21) between May and August 2023 with German representatives of different stakeholder groups (e.g. healthcare providers, researchers, patient representatives, data protection officers) with expertise in the secondary use of health data and the associated interests and risks for providers. We analysed the data using the deductive-inductive approach to qualitative content analysis.

RESULTS

Interviewees attributed several potentials reusing health data, such as improving healthcare quality and transparency. They also pointed to risks, including their causes and consequences for providers' reputation, economic and existential situation. Risks included a) biased results and interpretation of data analyses due to inadequate data validity and inappropriate analytical approaches, b) questionable reuse purposes, c) liability risks due to a lack of control over shared data and unresolved legal questions, and d) improved transparency that may reveal challenges and misconduct in healthcare. Suggested strategies for risk mitigation related to use and access decisions on secondary use requests. These include a) developing risk-reducing policies, b) ensuring transparent decision-making processes by involving all relevant stakeholders and applying structured risk-benefit assessments, and c) measures to improve the validity of secondary analyses. In addition, the interviewees identified further need for action to be addressed by providers, researchers and policymakers.

CONCLUSION

These findings point to needs and opportunities for action to manage risks that providers associate with health data reuse. Decision-making processes on secondary use requests should be based on normative principles, and quality, safety and trust in health data reuse should be enhanced. These recommendations should be taken up by responsible stakeholders in initiatives such as the MII, among researchers and policymakers to reduce reluctance and promote research with health data.