The importance of engagement and involvement in health data research - reflections on the #AtoZHealthData campaign and HDR UK Voices
5 April 2022 | Author: Alice Dowden, Public Engagement and Involvement Officer
Engagement and involvement of patients and the public is key to all we do at HDR UK. We want to help everyone learn more about how their data can be used safely and securely to enable discoveries that improve people's lives, and have the opportunity to influence and shape our work.
At HDR UK, we work with and learn from the needs and experiences of members of the public and people using the health and care system, and we appreciate that health data can be quite confusing! We want to support you to find out more and learn about this important area, so that you are better informed, and can feel confident in the access and use of your health data for research that can help improve people’s lives.
We also want to encourage as many people as possible to get involved with our work. We are committed to growing the impact that patients and members of the public have in the development of our work, and those who get involved make a real difference. It is important that we hear from people from all backgrounds with a mix of thoughts and opinions, and you don’t need to be pro-access when it comes to health data to get involved!
We are working hard to get more people engaged and involved in our work, through public engagement campaigns and our HDR UK Voices network.
The #AtoZHealthData campaign
As part of British Science Week 2022 on 17 and 18 March, HDR UK ran a social media campaign called #AtoZHealthData. With this campaign we aimed to help demystify some of the tricky health data research topics, build awareness about our work and share some of the incredible things going on at HDR UK and in the health data research community.
Across these two days we shared a Twitter thread running through the alphabet, sharing a health data research topic for every letter – we also made our own Wordle game!
We saw amazing engagement with this campaign, with over 82,000 impressions on Twitter (the number of times the Tweets were seen) and 1500 engagements overall (the total number of times a user interacted with the tweet e.g., clicking on the link, retweeting, replying, liking etc.). Over these two days we also saw a great increase in the number of people following our Twitter account.
Click here to read the #AtoZHealthData Twitter thread
Helping more people get involved with our work is key, and another vital aim of this campaign was to increase the size of HDR UK Voices – our growing network of people who want to use their voice to influence and shape our work at HDR UK. This network has been, and always will be, open to everyone and we have seen it go from strength to strength since its launch in October 2020, and we saw a huge jump in the number of people signing up through the campaign.
The HDR UK Voices network
Through HDR UK Voices, we share weekly emails with opportunities to get involved across the HDR UK community and beyond, interesting events to attend and thought-provoking updates.
Through regular promotion of our network, and the successful A to Z campaign, we now reach over 150 people every week. That’s 150 people better able to help us ensure that access to health data for research is carried out with public benefit at its core.
Margaret Rogers, Public Contributor said:
“When I signed up for HDR UK Voices network, I already knew through experiences, how important the public’s voice is in health data research. We receive regular emails alerting us to ways to contribute our ideas to current and planned health data research both within and outside HDR UK. Knowing what’s going on means we can choose when and how to get involved. And getting involved is the only way to help build the public’s confidence and trust in how our health data are being used for public benefit.”
We also share the HDR UK Voices email with colleagues across the health data research community, which helps us to reach even more people. We have links with use MY data, the Health Data Research Hubs, the National Institute for Health Research (NIHR), Health and Care Research Wales, and many more. As the HDR UK Voices network has expanded, we’ve been able to reach people across the UK and help them learn more about and get involved in health data research, bringing in a range of diverse perspectives from across the UK.
Alison Stone, Coordinator at use MY data said:
“Sharing information between organisations, like through HDR UK Voices, helps to ensure our members at use MY data are aware of as many opportunities as possible for engagement and involvement around the use of patient data.”
In the last 18 months we have shared over 50 opportunities to get involved, 35 different events for patients and the public, and 30 updates about our work across health data research in the HDR UK community! That’s over 115 ways that we have been able to engage with our incredible public contributors to make sure their voices are heard, and we’ve seen hundreds of people get involved.
We are incredibly passionate about involving patients and the public in health data research, so it is amazing to see that so many people are equally as passionate about getting involved with us!
Claire Newman, PPIE coordinator at HDR UK Wales and Northern Ireland said:
“HDR UK Voices is great to find out about who is conducting the current research and if there are any opportunities for the public to get involved that I can pass on. I look forward to receiving the email every Friday.”
What’s next for engagement and involvement at HDR UK?
We are determined to keep expanding our reach to help more people learn about health data research and get involved with us. We know that we may never be able to truly reflect the perspectives and voices of all patients and the public, but we are committed to striving to help more people use their voices to shape access to health data for research to improve people’s lives.
Through public engagement campaigns like #AtoZHealthData, we hope to help more people understand how their health data is used safely and securely to improve lives and give everyone the chance to get involved and use their voice to shape and influence our work through HDR UK Voices.
Join our HDR UK Voices Network and use your voice to make a difference
Join HDR UK Voices
HDR UK Voices is our growing network of people who want to use their voice to influence and shape our work. Join today and you’ll have the chance to make a difference in health data research....
Opportunities to Get Involved
We’re committed to growing the impact patients and the public have in the development of our work and key decision-making. You can find out about some of our opportunities to get involved below.