DATA-CAN’s response to the publication of the Goldacre Review
DATA-CAN, the UK’s Health Data Research Hub for Cancer, broadly welcomes the recently published Goldacre Review – Better, broader, safer: using health data for research and analysis. The review makes a range of proposals which are articulated in the report and include:
- increasing data transparency by adopting Trusted Research Environments (TREs) as secure virtual spaces for approved researchers to access and analyse health data which will improve data security
- improving opportunities for data analysts within the NHS by modernising their job structure and career development, including improving salaries, training, structure, community and best practice
- encouraging openness in NHS data analysis, for instance through the use of a shared library of data analytic tools, reducing duplication and increasing consistency of results.
The review provides a well-researched summary of the issues and challenges with NHS health data analysis and calls for a modernisation of processes, platforms and the data analysis profession. We support this call for action.
Trusted Research Environments
We also support the call for wider use of Trusted Research Environments (TREs) (also known as Secure Data Environments) which can provide safe and secure data for analysis and research to approved researchers. DATA-CAN is and will continue to play a leading role in the wider use of TREs as a key partner in the NHS Digital TRE, which is now making available NHS cancer data for research on the impact of COVID-19 on cancer patients and cancer services.
As noted in the review, a key question around TREs is functionality and interoperability. There is a risk that many TREs mean each one is underfunded, encourages local data silos and reduces the strength and reproducibility of UK-wide data analysis.
If multiple TREs are to succeed in delivering trustworthy and usable data analysis, they should be developed as part of an overarching infrastructure. This would enable and drive cross-disease and cross-disciplinary excellence in delivering the best health data research.
TREs should not become an additional hurdle to health data access and analysis, either at a managerial, operational or technical level. Conforming to the ‘five safes’ and principles of Trusted Research Environments (Safe people, Safe projects, Safe settings, Safe outputs, Safe data) is paramount for a secure but effective environment to promote data research and service improvement through the use of data.
Patient and public involvement and engagement
We are concerned about the relatively traditional and quick references to patient and public involvement and engagement (PPIE) in the Goldacre Review. Especially considering the importance of PPIE in ensuring the trustworthy and transparent use of health data in the eyes of patients and the public. There is an absence of consideration of children and young people’s views on access to and use of their health care data.
DATA-CAN knows from direct experience that more modern approaches, such as moving from patient engagement to patient governance and actively involving patients in operational decision-making, can work in practice. Within DATA-CAN, PPIE members are involved at every level, including governance and decision making. The DATA-CAN PPIE group is a vital partner is ensuring that health data is used transparently and responsibly. There are other excellent examples of PPIE in health data research, including through the One London health and care programme.
This is a missed opportunity to highlight a future where PPIE is central to health data research and we would like to see similar weight given to patient and public involvement and engagement from the Goldacre Review, so that this prominence is the norm, and not one-off exercise.
Role of life sciences sector
DATA-CAN welcomes the honesty of the report, both on the current inefficiencies in access, the national concerns about data access, and the support for appropriate data science by both the academic and commercial sector.
However, we would like to have seen a greater acknowledgement of the potential benefits of partnering with commercial organisations on health data research. The commercial sector has resources, skill and expertise to develop solutions to data challenges, in partnership with the NHS, and conduct research needed to develop new diagnostics and treatments. Clearly fair value needs to be considered and safeguards need to be in place and managed by data controllers, but the benefits to the health sector and patient care from appropriate partnerships with the life sciences sector should be recognised.
The costs of improving NHS data quality and setting up data infrastructure are significant and commercial involvement can spread these costs across all global cancer patients who benefit from the insights possible from UK cancer data.
In summary, DATA-CAN welcomes many aspects of the Goldacre Review, particularly around TREs, and we would like to work with the team to deliver the report’s recommendations, whilst also ensuring central roles for both patients and the UK’s thriving life sciences sector.