illustrated eye with data inside

Last autumn, the ODI, as part of its partnership with the eye health charity Action Against Age-related Macular Degeneration, set out to support the INSIGHT Health Data Research Hub to put patients and the public at the heart of data sharing. In the first of four blog posts, researcher and consultant Walter Pasquarelli describes the lessons we’re learning along the way. 

In August 2015, it was reported that NHS England was about to begin nationwide trials of a scheme allowing patient data to be sent directly from doctors to pharmacies. At the time, privacy campaigners argued that access to the data would enable chains to target patients with marketing campaigns related to their health conditions.

Despite assurances that pharmacies would proactively seek people’s consent, patient representatives said there was a lack of trust in how the data would be used. Yet early trials of the scheme had yielded good results, with 92% of pharmacies taking part reporting that having access to the data had improved their service to patients.

The roll out of the Summary Care Record programme (SCR) followed other similar attempts to optimise the sharing of patient data, including the failed nearly two years previously. In most instances there were a range of issues but one, in particular, stood out: a lack of consultation with, and involvement by the intended beneficiaries of the schemes – the patients and the wider public.

Since 2015, much work, and many column inches have been devoted to the sharing and use of patient data.

When we set out to work with Action Against Age-related Macular Degeneration as part of its involvement with the INSIGHT Health Data Research Hub in late 2019, it was within this context.

The INSIGHT Health Data Research Hub is one of seven across the UK funded through Health Data Research UK. They are working to build safer, more trusted mechanisms for researchers to share, access and use health data. Intrinsic to them all (and part of the assessment criteria applied by Health Data Research UK, the originators and funders of the Hubs) is the involvement of patients and the public; not just as benign observers, or subjects for surveys but as fully involved participants in decision making.

Eye-health data

The INSIGHT Hub is focused specifically on eye health. It aims to unlock new insights in disease detection, diagnosis, treatment and personalised healthcare. These insights exist in anonymised data from eye scans and images, and have the potential to address the prevention and cure of eye diseases including age-related macular degeneration and glaucoma. This is especially timely because the number of people with sight loss in the UK is expected to double to over four million by 2050.

So enabling the access to and use of this data holds huge potential for creating health and societal good through groundbreaking scientific discoveries.

Yet as we’ve seen, many attempts to increase access to health data have failed, often in a storm of negative publicity.

The hub’s plans to involve the public, patients and other stakeholders in deciding how data should be used are well aligned with our own interest in empowering people to play a more active role in stewarding data – that is, collecting, maintaining and sharing it. We share the view that building a diverse set of views into decision making about data will help ensure that it’s used in ways that realise its full benefits and limit the harms that it could cause people and communities.

One of the first tasks we undertook was to identify existing ways that other organisations in health data research in the UK directly involved the public, patients and others in their decisions. We were particularly interested in whose views were being considered and how different parties were involved in practical terms.

Understanding the landscape – research

We found several different groups and processes in health-data research that seek to involve the public, patients and other stakeholders.

Some have been established to oversee access to data collected across the National Health Service (NHS), such as NHS Digital’s Data Access Request Service and the Health Research Authority Confidentiality Advisory Group, whereas others are focused on data collected by others for different purposes. The Personal Information and Access Sub-Committee, for example, helps UK Biobank to steward data and samples from around half a million people for health research research.

Comparing existing data governance structures, we found that:

  • They emphasise the creation of public benefit as their central goal or objective.
  • They tend to provide access to data for accredited researchers and other entities conducting research – many for academic research, but some allow for certain types of research by industry.
  • The decision makers deciding who gets access to the data typically included people from organisations that had collected the data, clinicians and researchers. Some groups, but not all, included patients, representatives of patient groups and lay members of the public.
  • In most cases the groups’s recommendations are advisory. Where there are multiple voices involved in making the decisions about data access, decisions are typically made through achieving consensus or majority voting.
  • Most groups act as extensions of a larger organisation, typically in the form of informal advisory bodies or committees.


Our review of these existing groups and processes informed our thinking into how we could support AAAMD and the INSIGHT Hub to involve the public, patients and other stakeholders in its decisions. It also highlighted particular topics we should address and areas that we thought we could improve. These included:

  • Some groups seem to lack independence. For example, in some cases, the group was embedded in a larger organisation that provided access to data, and in others, groups appear dominated by representatives of a particular stakeholder group. We thought that the lack of independence might mean that the involvement of patients and the public in decision making could appear ‘tokenistic’. And this, in turn, could lead to scepticism about the legitimacy of the decision making itself.
  • In other instances, groups can lack transparency. For example, we couldn’t find the membership lists of some groups, or the criteria used for assessing data access requests and the reasons for their advice being disregarded.
  • Some groups provided only limited stewardship. In some cases, their advice could be disregarded by the data-holding organisation without reasonable explanation. There didn’t seem to be evidence of data holders exploring whether more authority could be delegated to these groups over time.

It appears that there is more to be done to ensure a diverse set of experiences and opinions are involved in the sharing and use of health data. While we don’t know all the details of the examples we looked at, we can learn from their experiences in involving the public and others to ensure that data is being shared in a fair and trustworthy manner, to the benefit of everyone.

In our next blog post, we’ll share more about how we used this research and worked with the INSIGHT Hub to design an approach for involving the public, patients and other stakeholders in its decision-making.

Read more about INSIGHT here