John: We hope to promote trust in the research process

Here we present the third in our series of four blogs, ‘The heart of creating change in research – perspectives of the public’. John Walsh, a public contributor who supports our CVD-COVID-UK Approvals and Oversight Board and a member of our Public Advisory Group, talks about why developing trust in health data research from a public perspective is important.  

Can you tell us why health data is important for research and why building trust with the public is important?

We are on the threshold of an entirely new way of researching health. As well as trying to develop medicines and other treatments to make people better, we now have the possibility, in large-scale data research, of finding why they are ill in the first place and deploying prevention rather than cure. 

It would need only modest success along this path to save enormous amounts of money for the NHS. But getting to that point depends on the quality of the data. This can be a challenge as some patients and the public may feel uncertain about consenting to share their patient data due to concerns about data security and how their patient data is being used within research.  

Trust in health-data research is not as strong as it should be, given the improvements to security measures that have been set up all around it. Any attempt to increase public trust and transparency in the process must be welcomed. – John Walsh

Enhancing understanding

Providing opportunities for the public to engage with health data research, enhancing understanding through the use of simple and transparent information and creating platforms for the public to openly discuss data security and consent can help towards demonstrating trust. This improves the relationship with the public who might have questions and not understand how patient data is being used in research.

Can you tell us more about your role as a public contributor supporting us to build trust and transparency with the public?

At the Centre, we as public contributors input into the Centre’s operations and activities, including priority setting and input into research projects. We also help the Centre to engage with the wider public to support a greater understanding of how health data gets used in research. In this way we look to demonstrate trustworthiness in the research process and how data science research can be used to help patients.

What’s next?

We’re making improvements in the way we engage with the wider public. By working closely with Health Data Research UK and supporting science festivals across the UK we can engage with different communities which contributes to developing trust and transparency in health data research. Our PPIE strategy for 24/25 will be building upon this work as we aim to develop stronger partnerships with public facing organisations across the UK.

Find out more

Read our recent article and case study to find out more about our approach to PPIE.