Trusted Research Environments Require Strong Community Involvement — Here’s Why
Bringing people together to explore, collaborate, learn and ultimately transform health and social care systems for the better
In this blog, authors of a recently published article in Data & Policy — Prof Michael Boniface, Dr Laura Carmichael, Prof Dame Wendy Hall, Dr Brian Pickering, Prof Sophie-Stalla-Bourdillon and Dr Steve Taylor from the University of Southampton — argue that alongside safety and security features, and support for advanced research methods, strong community involvement should be a core focus for next-generation Trusted Research Environments (TREs). They present key community involvement aspects from their design of a next-generation TRE — which they call the Social Data Foundation (SDF).
“One of the greatest challenges facing health and social care services, both presently and in coming decades” is supporting people living with multiple long-term conditions. A study has found that in the UK over half of people aged over 65 (54.0%) in 2015 had two long-term health conditions — a figure which is predicted to have increased to 67.8% by 2035.
Social determinants of health such as education, working life conditions and early childhood development significantly affect individual well-being and health inequalities, including development of multiple long-term conditions. Most people recognise the value of enriching the understanding of the social determinants of health and its role in discovering effective public health prevention policies and personalized interventions.
Good quality data is vital — given such research relies on the analysis of multiple types of data within and across traditional health and social care boundaries, such as data relating to lifestyle behaviours, socioeconomic factors and health. Data science and artificial intelligence methods are crucial too — in that, they help researchers to make sense of all this data.
Although not a new question, understanding how to facilitate such data-intensive research in ways that are safe, secure, rights-respecting and endorsed by communities remains key. One approach being keenly promoted is the next generation of TREs.
In a nutshell, TREs — also known as Data Safe Havens — are safe and secure platforms supporting workspaces for approved research that can be remotely accessed by approved researchers.
The purpose of TREs is to facilitate trustworthy and collaborative research that can help transform health and social care systems through the generation of “deep insights”. It is crucial that members of the public, who are the recipients of care and the focus of public health promotion can have their voices heard — such as, through a “learning data governance model” — together with those of researchers, health and social care providers and policy makers.
Without these voices, TREs will place their research activities at greater risk of public mistrust and disapproval by the very individuals and communities they intend to serve. Or TREs may even fail to get off the ground. (Although, little to do with any specific or proposed TRE — many people will be well-aware of controversies surrounding health and social care data sharing, such as care.data, and more recently plans to share GP data). Ultimately what is needed is robust representation of individuals and communities in how TREs are governed together with meaningful and inclusive public involvement strategies.
Next-generation TREs
Right now close attention is being given to how the evolving requirements of health and social research for the public good can be better supported. Current focus has shifted to consider “next generation TRE capabilities” — such as being able to facilitate the discovery and linkage of more diverse types of data, and enable advanced data analytics like machine learning.
Focus on next-generation TRE capabilities is a valuable step in the right direction for health and social care research. But, being assured that health and social care research is taking place safely, securely and for public benefit through TREs is one thing. Giving people a way to have some direct involvement in the codesign and coevaluation of digital health and social care solutions through TREs — if they so choose — is quite another. Through the ‘Social Data Foundation’, we have designed a TRE to do just that.
Introducing the SDF-style TRE
Put simply the SDF model provides a design for next-generation TREs that enables members of the public, health and social care providers and researchers to work together so that they can collaborate, learn and transform health and social care systems for the better.
Our SDF-TRE is built on the combination of two core elements: (1) stakeholder-sensitive governance mechanisms and (2) datatrust services. Let’s look at these in a little more detail:
1. Governance mechanisms for collective-centric decision-making, data stewardship, and citizen representation, which are sensitive to the needs of all stakeholders — including members of the public, researchers, policy makers, and health and social care providers.
- Collective-centric decision-making. The SDF Board is the inclusive decision-making body whose appointed members represent the interests of the SDF’s key stakeholders. By widening the range of stakeholders involved in key decision-making processes (data governance, design, evaluation, etc.) to include providers, civil society and communities all stakeholders will be better informed about needs and expectations increasing likelihood of data sharing, participation and successful adoption of proposed changes.
- Data stewardship. Data stewardship is provided through the ‘Independent Guardian’ — a team of experts who oversee the administration of an SDF-TRE to ensure that all research is carried out to the highest standards of excellence for data governance.
- Citizen representation. The voice of the public is represented at board level through Citizen Representatives. A key role of these representatives is to devise and manage a community engagement framework, including activities where members of the public can cocreate and participate in health and social care systems transformation as well as exercise their data- related rights.
2. Datatrust services are where these stakeholder-sensitive governance mechanisms are integrated with technical data management and access services to create the TRE platform.
- Data-research interactions. Within an SDF-TRE, datatrust services govern a wide range of data service functions to collect, curate, discover, access and process health, and social care data — enabling data-research interactions between data providers and researchers, while implementing the necessary management and governance arrangements.
- Progressive governance. Research methods change over time. As do stakeholder expectations and data governance requirements. Being able to dynamically orchestrate secure dataflows (e.g., monitor risks at run-time) through datatrust services means that an SDF-TRE has greater flexibility and adaption to change. And that emerging best practice, collective ethical oversight and citizen participation (i.e., representation, codesign, and evaluation) can be incorporated more naturally into phases of research.
Through next-generation TREs, we can enhance the ways people can collaborate in a trustworthy fashion. Giving us an opportunity to expand and extend our comprehension and practical experience of collective-centric decision-making, data stewardship, citizen representation, codesign and coevaluation. Leading to our ultimate goal — advancing our knowledge and understanding of some of the biggest challenges facing health and social care systems, such as understanding the social determinants of health and multiple long term conditions. And transforming such systems for the better.
Building next-generation TREs from datatrust services might just provide a good place to start.
Further information about the ‘Social Data Foundation (SDF) model’ for TREs can be found by reading our Data & Policy article and Web Science Institute White Paper. You can also watch a keynote speech delivered by Prof Dame Wendy Hall at the Sixth International Data for Policy Conference 2021.
