Exploring Mediating Factors of Long-term Collaborations in Health Data Sharing between Government and Academia
Background
Government-academia collaborations in health data sharing have been crucial in responding to public health crises like COVID-19. Much focus in academic literature is placed on short-term, crisis-driven initiatives that cease once the crisis subsides, highlighting known challenges like funding and governance. However, few explore the specific reasons behind their success or failure, and the long-term potential of these collaborations remains under explored. Long-term government-academia collaborations in health data sharing initiatives offer sustained access to dynamic, real-world health data, driving continuous innovation in research and informing healthcare policy decisions. Extended data access enables researchers to identify emerging trends, develop predictive models, and refine recommendations based on real-world evidence. This fosters more adaptable, resilient health systems that respond to evolving needs, not just during crises, but as part of everyday public health management.
Aim
This research will explore what makes government-academia collaborations in health data sharing sustainable beyond crises like COVID-19. By reviewing international case studies and conducting interviews with UK-based researchers, we aim to identify critical barriers and success factors that influence long-term collaboration in health data sharing. Findings aim to provide practical guidance for shaping such initiatives, informing future collaborations and strategies to ensure their ongoing effectiveness and contribution to public health beyond crisis periods.
- Highlight lessons from real-world cases to guide the design, implementation, and long-term sustainability of government-universities health-data sharing collaborations
- Produce initial evidence in the most effective ways for those agreements to be crafted and maintained, guiding future research to establish best practices.
What we are doing
This study begins with a scoping review to explore relevant GACiHDS initiatives, identifying key projects and providing an initial understanding of mediating factors to guide subsequent interviews. The review will include both academic papers and grey literature. It will also help pinpoint specific UK-based projects that are particularly relevant for in-depth interviews with stakeholders involved in government-academia collaborations in health data sharing. The interviews will explore topics such as data access agreements, stakeholder roles, and challenges in collaboration, as well as additional factors identified through the scoping review, to understand how this influence the success and sustainability of these initiatives. While the study will not provide a clear framework for implementing GACiHDS due to the lack of sufficient academic literature on sustainable government-academia collaborations in health data sharing, it will offer valuable insights to guide further research and the development of best practices for long-term collaboration in health data sharing.
TEAM
TAKING PART
Download the Participant information sheet
How will we implement the results?
The findings from this study will be shared with key interviewees, relevant stakeholders in government and academia, as well as individuals likely to use the insights for future research. While the study will not directly implement any concrete strategies, it aims to inspire further research by providing evidence-based insights into the sustainability of government-academia collaborations in health data sharing initiatives. By sharing the results with those who can build on these findings, we hope to contribute to the development of future collaborations and research in health data sharing.
VOLUNTEERS REQUIRED
Download the recruitment advert letter here
What will the outputs be?
A comprehensive report detailing the findings from specific contexts associated with individual cases of GACiHDS and practical recommendations for enabling and maintaining sustainable collaborations in similar contexts derived from evidence generated in the study. The report will also outline areas for further research to establish and evaluate a more generalisable framework or guiding principles for such collaborations.
Meeting and discussing with stakeholders involved in public health decision-making and academia, presenting them with the findings and recommendations, including approaches to evaluate / generate evidence from more GACiHDS and put new ones in place.
Expected Impact
Given the nature of the research, the direct impact is hard to quantify. In time, it will:
- Improve long-term collaboration strategies for GACiHDS, build the right foundations for future ones (i.e. regarding the sharing agreements to put in place, etc.)
- Improve public-health outcomes based on more informed decision making from targeted recommendations from expert researchers and based on real-world dynamic data.
- Improve cost-efficiency of the system notably regarding readiness and informed decision-making (some significant costs will be present to set up the required long-term management and infrastructure as well as for the maintenance)
- Inspire future research, providing a foundation for further studies that will help shape long-term GACiHDS initiatives, benefitting the broader health ecosystem.
CONTACT US
For further information please get in touch with Ghita Benjelloun Benkacem at
Project End Date
4 July 2025