The HDR UK Public Advisory Board (PAB) welcomes the chance to contribute to the Goldacre Review of the use of health data for research and analysis. We were disappointed to note that the terms of reference for the review did not explicitly mention public involvement, so we will briefly set out why we believe it is fundamental to the success of the enterprise.
The safe and efficient use of health data can only be assured if there is significant and meaningful public involvement built into the system.
People can be fearful about how their personal data is used. Our experience shows that the direct involvement of lay people in health data science builds confidence.
It can also ensure that publicly-funded research is relevant, appropriate and prioritises the areas with the greatest health benefits. Likewise it helps ensure that research benefits the patients whose data has been used.
Public involvement has been invaluable to pandemic research projects, such as the development of an online calculator to help people understand their personal Covid-19 risk. Lay people have contributed greatly to HDR UK’s submissions to the SAGE committee on research priorities, calling for more work on health inequalities, social care, long Covid and vaccine hesitancy.
Public confidence in health data research and analysis requires:
- Data protection and respect for privacy
- Trustworthy processes and conduct
- Impactful use of data
- Making research relevant to the people whose data it uses.
This can be achieved through:
- Honesty and probity
- Meaningful transparency
- Clear communication
- Public involvement in data stewardship and research.
These principles must be embedded throughout the revised health and care data strategy.
If the public are excluded the price will be high, as past experience has shown. Distrust and unwillingness to share data damages research. This can fuel unfounded fears about healthcare, like those related to vaccinations, harming the individual and society.
- Meaningful patient and public involvement must be a requirement for all publicly funded health data research – this should include involvement in:
- Determining research priorities
- Assessing applications
- Funding decisions
- Steering or oversight committees
- Study design
- Monitoring progress and outcomes
- Disseminating and communicating results
- Developing public resources on understanding and using data.
- Population datasets and algorithms must fully represent our social, racial and ethnic diversity
Eliminating bias due to under-representation of disadvantaged groups will build confidence, improve research and help address health inequalities.
- Guaranteed public membership of independent data access committees
Lay members should be actively involved in judgements about whether individual data access requests meet appropriate standards of public benefit and value, privacy, safety, transparency and avoidance of harm.
- End the COVID-related temporary relaxation of information governance requirements
Patients need the power to opt out and greater control over who can access their data. This will increase public understanding of the benefits of health data use for service improvement and research.
- Patients must have access to their full medical records and know who is accessing them
This is established UK government policy and needs to be swiftly implemented. Denmark, Sweden, Estonia, Australia and the USA have clearly demonstrated the benefits, and greater willingness to share data, including among minority groups.
Health Data Research UK (HDR UK) is the UK’s national institute for health data science and its PAB consists of a diverse group of lay people including health service users.
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