Oversight of research and health data use

Beyond being involved in shaping research projects, increasingly patient partners are involved in the oversight of research and health data use.

Why is patient involvement in the oversight of research important?

Having patients involved in the oversight of research can:

• Keep research safe for everyone, ensuring that research practices safeguard patient rights, privacy and well-being.
• Align research with patient needs and the public interest, ensuring that research focuses on issues that matter to the patient community and on areas of public interest. This should apply beyond clinical research to also include basic discovery research about gene-environment interactions, exploration of complex areas of the genome and investigation of biological mechanisms for possible drug targets.

Why is patient involvement in the oversight of health data use important?

Health data is increasing rapidly. Be it patient records, biobanking, registry data or genomic data, it has allowed researchers to use and link data sets for research and analyses. This helps in planning new care services and in research to find new insights and treatments.

However, the use of this data for research may present some ethical issues if its proposed new purpose differs from the original intent of data collection. Therefore, data custodians need to build and maintain trust with the people whose data they look after. Involving the public and patients in data access committees is one way to build trust and transparency and ensure the research benefits the public.

The extent and consistency of involvement in the oversight of research and health data use varies by countries and research areas. Here is one example from the UK:

Some countries and organisations have patient partners on research oversight committees, scientific committees, institutional review boards (IRB) and data access committees.

For example, the Access Review Committee at Genomics England includes several participants whose data is in the National Genomics Research Library, as well as professional ethicists, data security and healthcare experts.

You can be involved if these involvement opportunities are available in your country, as such practices help to build and maintain public and participant trust in research and health data access.