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Exploring new models of health and care data sharing

Tue Feb 18, 2020
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Find out how we’ve partnered with the Health Foundation to explore the potential of new models that can support data technology evaluation

How can the need for timely implementation of emerging health technologies be balanced with the need for appropriate safety and efficiency checks?

At the ODI, we’ve partnered with the Health Foundation – an independent charity committed to bringing about better health and healthcare for people in the UK – on a joint research project exploring the potential of new data stewardship models to support the evaluation of data technologies in the health and care sector.

Recent developments in data-driven technologies offer the potential to help address some of the significant long-term problems facing health and care, including: workforce and financial pressures, widening health inequalities and an ageing population. The public sector is being encouraged to capitalise on this potential by shortening the time it takes to move from invention and innovation to adoption and implementation, but this presents challenges for those tasked with evaluating these new technologies to ensure they are safe, effective and efficient.

An additional pressure arises because many of these technologies have been developed through significant investment by the private sector, meaning attempts to evaluate the impact of and ongoing delivery of these promising technologies will require cooperation and collaboration between the private and public sector. In particular, it will require bringing together data from public and private sector sources.

We are working with the Health Foundation to explore whether new data stewardship structures such as data trusts, data cooperatives and data clubs can facilitate the sharing of data between public and private organisations to support the evaluation of new technologies in health and care.

These new models of data stewardship have the potential to benefit the public and private sectors by facilitating and incentivising mutual data exchange and access, while benefiting the wider public in terms of trust and adoption of well-evidenced innovations.

At the ODI, we have been looking into methods for increasing access to data while retaining trust. We have developed a map of different data access models and have particularly focused on the role of data stewards, brokers and institutions that support bringing together data from multiple organisations. Our work has centred on data trusts – legal structures that support independent third party stewardship of data on behalf of a community – but has also explored related models such as data clubs and cooperatives. Our CEO Jeni Tennison recently wrote about what defines a ‘data institution’ and what constitutes one.

We will use real-world use cases to explore which data stewardship models are able to help private and public sector organisations share sensitive data in trustworthy ways given different technologies, contexts, ecosystems etc.

The aim of this work is to influence the development of a policy framework that can support these new stewardship models and ensure that the evaluation of emerging technologies can be facilitated in ways that are trustworthy, fair, and ethical.

We will be running interviews and organising workshops throughout the spring of 2020 with companies, evaluators, regulators and experts from the health and care sector, in order to scope and co-create the use cases that will best help us achieve these aims.

Please get in touch if you would like to get involved, we’d love to hear from you.