After our first rehearsal for our HIFA member and associates workshop TA2 02 at the United World Data Forum, one presenter asked "what exactly is the point of the forum and of our workshop" that the presenter had agreed to present in. A partial answer may be found in the advent of Trusted Research Environments.
Closing the 17-year gap between scientific evidence and patient care — University Affairs
"Not many patients would be happy to hear that there’s a lag of about 17 years between when health scientists learn something significant from rigorous research and when health practitioners change their patient care as a result, but that’s what a now famous study from the Institute of Medicine (now known as the National Academy of Medicine) uncovered in 2001.
The study reflects a major problem that has plagued health care systems for decades – namely, the timely integration of high quality scientific evidence into daily patient care practices.
If you knew there was research available to guide the care you required, wouldn’t you want your health care provider and the system to use that research to inform decisions pertaining to your care? Wouldn’t you want to receive care that is scientifically proven to be of benefit and not receive care that is scientifically proven to be of no benefit?
Although it has been clear for centuries that science contributes to advancing the practice of medicine and improving disease-specific survival rates (for example, the discovery of penicillin and its effect on infection-related mortality rates), this concept only became popularized within the medical community toward the last quarter of the 20th Century through the “evidence-based medicine” movement.
Closing the gap between research and practice
More recently, those who work in the field of “Knowledge Translation” have been working hard to close the gap between research and practice. For the most part, they’ve done this successfully by making the abundant research findings more accessible to policy makers, professional societies and practitioners as well as “nudging” these parties to adopt more timely evidence-based practices.
Below is a useful summary of what a Trusted Research Environment (TRE) is: (I hope that TREs will be discussed at the UNWDF and that some of the TA2 02 workshop presenters will have the time to disseminate the presentations from the UNWDF during and after the UNWDF and, perhaps, at a hybrid workshop in Glossop on June 19th.
Putting the Trust in Trusted Research Environments | Understanding patient data
"Tom Harrison, Senior Policy Officer of "Understanding Patient Data" shares some of Understanding Patient Data’s views on Trusted Research Environments, drawing on Understanding Patient Data's response to Health Data Research UK’s recent consultation.
"Trusted Research Environments (TREs) are a secure space for researchers to access sensitive data. Commonly referred to as ‘data safe havens’, TREs are based on the idea that researchers should access and use data within a single secure environment. TREs have been set up across many academic institutions, often in partnership with public agencies. They vary widely in scope and purpose; some are long-established, and others are being developed rapidly in light of Covid-19. Below are live examples:
• OpenSAFELY is a collaboration between academics and health record software companies to analyse NHS primary care records from more than 24 million patients to understand the impact of Covid-19 in the UK.
• Secure eResearch Platform (SeRP) - which includes the Adolescent Mental Health Data Platform (ADP), Dementia Platform UK (DPUK) and SAILBANK – has enabled researchers to access data derived from millions of depersonalised health records since 2011.
"TREs differ from other more traditional models of data use where researchers receive downloads of data to analyse on their own systems and software. In a TRE, users go to the data, the data doesn’t come to them. This provides greater assurance that data is handled securely, as data use can be tracked and technical safeguards ensure no data leaves the secure environment. How could they improve?
"Despite trust being inferred by the name, TREs vary in how they approach the important issue of maintaining public trust. Indeed, while TREs can provide some of the technical tools for trustworthiness, such as data security and strong anonymisation processes, we know there are other factors that need to be considered. We therefore welcome Health Data Research UK’s plan to align approaches to TREs across the 30 NHS and research organisations in its Alliance. It’s a great opportunity to reflect on what the public expects to happen to data about them and to build these views and values into how TREs operate in the future. The 3 factors outlined here we hope will provide some instruction to institutions wanting to set up or improve TREs with trustworthiness in mind.
"1. Managing risk to ensure public benefit People want to know that public and patient benefit is prioritised when health data is used. But it is important to acknowledge that health data science often involves trying new things, for example linking datasets in novel ways or developing new methods to spot trends and patterns in data. Calculated risks may be necessary to produce research that is likely (though not guaranteed) to have a public benefit. As such, while it’s welcome that HDRUK has reaffirmed its commitment to the internationally recognised ‘Five Safes’ model for data use in TREs - as it offers a strong, clear structure for safeguarding health data - it’s important to take an approach that seeks to minimise risk rather than eliminate it entirely. The only way to eliminate risk would be to not use the data at all. So, while risk management is critical to get right, it need not involve overly burdensome processes that prevent research that could benefit the public.
"2. Involving people People feel a sense of ownership over health data and want to be involved in decisions about its use, even if they cannot be identified from the data. In a recent national survey co-commissioned with NHS England, we found that 74% of people believe the public should have a say in how NHS-held data is used. We suggest that a ‘learning data governance’ approach could help TREs build public views into their decision-making processes and learn from what works and what doesn’t.
"3. Transparency about third party partnerships Controversy about commercial access to health data has led to concern about companies that provide software and hosting services for data – even if they don’t use or access the data themselves. Institutions hosting TREs therefore should be conscious of which third parties (private companies, universities, charities) are involved in the infrastructure and management of TREs. Organisations running TREs should be open about the role of third parties, the terms of their contracts, what they are and aren’t allowed to do with the data, and why they were chosen to be involved. Commercial confidentiality is often cited as a reason not to disclose this information, but there are good reasons to challenge the assumption that contracts can’t be public.
Talk to us about building trust If you’re working on a TRE and want to discuss the best ways to demonstrate trustworthy practice, please do drop us a line at hello@understandingpatientdata.org.uk. You can read our consultation response in full here.
You are receiving this message because you are a leader of the community HIFA - Healthcare Information For All. All community leaders receive these notifications immediately regardless of their email settings for this community.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com
