29 June 2026
Data quality matters; trust depends on purpose; security must be visible, not assumed; transparency and consent are essential; and trust must be earned.
Share this page
Public Advisory Group members Caroline Brocklehurst and Sarah Chave, from the Transforming Data for Trials Programme, share considerations for public trust in onward sharing of Trial and Health Systems Data.
We were invited to contribute to the May 2026 meeting of the Alliance Clinical Trials Stakeholder Prioritisation Forum on onward data sharing in trials using health systems data. The Forum brought together a range of perspectives, including researchers, funders, regulators, data custodians and public contributors, to explore the opportunities, challenges and priorities associated with sharing trial and health systems data beyond their original use.
Our role was to bring a public perspective to these discussions. While researchers may focus on scientific value and data custodians on governance and security, we wanted to consider what matters most to patients and the public whose data underpin this research.
We recognise the potential benefits of onward data sharing. Sharing data beyond the original study can maximise the value of research, reduce duplication, support new discoveries, and ultimately improve health and care. However, our discussions highlighted that public support for onward data sharing should not be assumed.
When we explored the topic, we found ourselves returning to a common theme: trust. We were not asking whether data should ever be shared. Instead, we were asking what needs to happen for onward data sharing to be trustworthy.
For us, four interconnected priorities emerged: data quality, trust, security and transparency.
Before data are shared and reused, we need confidence that they are accurate, complete and representative.
Many of us have experience of finding errors or missing information in our own records. We are not alone. Recent Healthwatch research found that around one in four people reported inaccuracies or missing information in their NHS records. If these data are subsequently shared and reused, there is a risk that errors could be perpetuated and amplified through future research. For this reason, we believe that maintaining and improving data quality should be a key consideration in any onward data sharing strategy.
We also discussed the issue of missing data. Data captured in some datasets, may not include all appropriate indicators in an individual’s health and treatment outcomes or experiences. Additionally, some groups are already underrepresented in healthcare records and research. If onward sharing relies heavily on existing datasets, there is a risk that these gaps become reinforced rather than addressed.
We also questioned whether some datasets may be reused simply because they are available and convenient, rather than because they are the most appropriate source for answering a particular research question. Reusing data should not come at the expense of research quality.
As public contributors/members of the public, we recognise that onward data sharing can improve the efficiency of research. However, efficiency alone is unlikely to inspire public confidence. We want to understand how sharing data will contribute to better healthcare, better treatments, better services, or better outcomes for patients and communities.
For many people, trust is linked directly to public benefit. The clearer the purpose, the easier it becomes to understand why onward data sharing may be worthwhile. Trust is often hard won but easily lost.
Trust is also influenced by who has access to data and how decisions about access are made. Discussions about onward data sharing often include questions about commercial organisations. We recognise that collaborations between academia, healthcare organisations and industry can deliver important benefits. However, many members of the public want reassurance that public benefit remains the primary consideration and that appropriate safeguards are in place.
We believe openness about who can access data, under what circumstances, and for what purpose is essential for maintaining trust.
Strong security measures are fundamental to responsible data sharing.
As public contributors, we expect robust governance arrangements, secure research environments, and clear procedures for protecting sensitive information. However, security is not only about having safeguards in place. It is also about helping people understand those safeguards.
Terms such as de-identification, secure data environments and governance frameworks may be familiar to researchers, but they are not always familiar to the public. Explaining these concepts clearly and transparently can help build confidence and support informed discussion.
We also believe that public voices should continue to play a meaningful role in governance and oversight.
Transparency ran through every aspect of our discussions.
People want to know how their data may be used, who may access it, and what protections are in place. They also want information to be presented in ways that are understandable and accessible.
Consent raises additional challenges. Research and technology continue to evolve, and future uses of data cannot always be predicted when consent is first obtained. This raises important questions about how consent should be managed over time, particularly when data are reused in contexts that were not originally anticipated.
There are no easy answers, but we believe these conversations should happen openly and honestly.
Our discussions did not lead us to conclude that onward data sharing should always be avoided.
We recognise the enormous value that responsibly shared, high-quality, trial and health systems data can bring to research and society. However, we also believe that trust cannot be assumed simply because data are secure or because sharing is legally permissible.
Trust is built when people can see that data is representative and accurate, used for clear public benefit, protected through robust governance, and shared transparently.
As the use of health systems data in trials continues to grow, we believe these principles should remain at the centre of discussions about onward data sharing. Not to create barriers to research, but because they help ensure research continues to have the confidence and support of the people whose data make it possible.
