The General Data Protection Regulation (GDPR) was introduced in 2016 to regulate the way companies process and use personal data collected from consumers online.
GDPR protects us in many ways, including when we take part in health and social care research.
That’s why it was really important, when drafting the HRA’s new GDPR Transparency Wording Template for all sponsors, that we ensured what we published worked for patients and the public.
After all, the statement was created for them, and one of the ways we ensure they feel fully informed, protected and assured is through providing them with this statement which explains what will happen whenever they take part in research.
To help develop the template for sponsors we held a number of workshops that were designed to find out exactly what the public want to know when it comes to their data, to ensure they can put their trust in researchers to handle their data responsibly.
The first workshop took place in February 2023 and included members of the public with experience of taking part in research, Research Ethics Committee members and members of the research community.
We asked attendees to check the wording of the GDPR Transparency Wording Template against our Participant Information Quality Standards.
Based on the feedback we received, we changed the wording to improve clarity and reflect people’s concerns about the use of their data. For instance, we included more information about International Transfers, as participants were more concerned about their data being sent abroad now that we are no longer in the European Union.
Working alongside Expert Citizens
Our second workshop took place in September 2023, at Expert Citizens CIC in Stoke-on-Trent. Expert Citizens are a Community Interest Company that is led by and for people with lived experience of homelessness, mental ill-health, drug and alcohol use, domestic abuse, poverty and contact with the criminal justice system.
It was important that the new text in the template reflected the concerns of people who have been historically excluded from accessing research, traditionally termed ‘underserved’ members of society, and was accessible to them.
The workshop was delivered by Matt Rogerson, Research Regulation Specialist at the HRA, Expert Citizens Research and Evaluation Lead, Sophia Fedorowicz, and Kat Evans from the HRA’s public involvement team, and attended by six members of Expert Citizens.
It consisted of a presentation, a question and answer session, and what we are going to claim was the world’s first ever game of GDPR bingo!
Not only was it a fun experience, it was incredibly valuable and led to a number of changes to the final GDPR Transparency Wording Template, reflecting the needs and wishes of those in attendance.
The people who attended the workshop seemed to enjoy it, and one commented that it was good to know that “someone is in my corner” and protecting their data when they take part in research.
The changes we made included removing acronyms and instead including agency names (such as the Information Commissioner’s Office) in full, and giving examples of why data might need to be sent abroad and how it will be protected.
Sophia Fedorowicz, Research and Evaluations Lead at Expert Citizens“Our membership at Expert Citizens take part in a lot of research and evaluation activities and them having the opportunity to provide their feedback to the HRA about this important topic was great. We all had a good session with plenty of biscuits. I really feel like Matt and I were able to work together to develop a workshop that brought the topic to life a little bit, and made it something that was accessible and informative.
“We are so pleased to see our feedback has been taken seriously and changes have been made to the transparency statement. I can’t wait to see it go live and show our membership the result of their contributions.”
We have now published the new and improved GDPR Transparency Wording Template for all sponsors and fed back to those who took part on the impact they had on our work.
It really does feel like we have helped to build trust and confidence in the use of data for health and social care research. We couldn’t have done it without the involvement of the people who matter the most – the public.
(Blog co-authored by Matt Rogerson, Research Regulation Specialist, Kat Evans, Senior Public Involvement Officer and Sophia Fedorowicz from Expert Citizens)