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Your HRA public involvement newsletter
Issue nine, June 2023
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 Discussion at the launch of the HRA's strategy launch - making it easy to do research that people can trust
Welcome
Hello everyone and welcome to the ninth public involvement newsletter.
We have had excellent support from two members of the public who are helping us to make the newsletter more accessible and engaging. It's a work in progress, but hopefully you'll notice small improvements.
Making it easier to read the newsletter
 An image of the top of the newsletter showing where to click to view as a webpage
Reading the newsletter on a screen
If you open the newsletter as a webpage, you can make the newsletter fit the width of your screen. Click on the ‘View it as a Web page’ link at the top of this newsletter, press ‘Ctrl’ and the ‘+’ symbol. Keep clicking the ‘+’ symbol until it is at a width that suits you.
Printing the newsletter
We have created a text only version of the newsletter that should be easy to print.
If you want to print with images, you may need to change your printer settings so it doesn't print with a lot of white space at each side. You can try increasing the scale.
For support with this or if you need the newsletter in a different format, email the public involvement team or call on 0207 104 8161.
In this month's newsletter
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In this section you can find out about the different ways of working with us.
 Group discussion at the launch of the HRA's strategy launch - we make it easy to do research that people can trust
The HRA is looking to invite a member of the public to co-chair a new group which will look at how to help keep personal data safe.
Personal data about our health and the care we receive can help researchers to develop new treatments and enhance our health, but we need to ensure that this information is used safely and transparently.
The new group will look at how this can be done. We think it's important that this is co-chaired by a member of the public who has a good understanding of the concerns that different groups, and the public more widely, have about data being used for research.
Look out for more information in a future newsletter.
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In this section, we aim to respond to one of the questions we are most frequently asked – how has our work improved things for other people?
Make it Public Week, which ran from Monday 20 to Friday 24 March 2023, was the first ever week dedicated to research transparency. The week encouraged researchers to be transparent about all aspects of research, from recruiting participants all the way through to sharing results.
During the week, more than 300 experts from across health and social care research came together at webinars, workshops and panel discussions to share best practice, learn from others, and hear why transparency is crucial to good research.
The videos from Make it Public Week can be found on our YouTube channel.
Will Griffiths-Stent, Senior Engagement Manager at the HRA
How has public involvement informed and influenced this work?
Public involvement has been central across this year’s Make it Public Week and the accompanying report. I personally have found this to be incredibly inspiration and helpful. We had input from contributors across all areas of the week, including planning and structure of the workshops, text and tone of invitations and pre-reads, reviewing and advising on speakers and case studies, and evaluating attendee experience. As someone responsible for delivering this piece of work, the input has meant we have been able to start and run this week in the most open, accessible, and inviting way.
What’s gone well, and what hasn’t gone well?
A highlight for me personally has been the strength and openness of my working relationship with the public contributors. Our regular meetings, email conversations, and just the wider spending of time and energy together has meant that there’ve been no barriers or limitations felt on what can be made better. We’ve been able to collectively push and challenge boundaries of what we could do with a webinar setting, and have been able to be creative and turn ideas on their head.
What have you learnt?
I've learnt that one of the most effective things we (the HRA) can do is to bring people together, and then get out the way. Make it Public Week also showed that taking the standard ways of delivering something, bringing them back to basics and looking at them through a creative lens, can create a much more engaging and entertaining way of sharing information that will stick with people.
Amander Wellings, neurodivergent service user and carer, public involvement consultant, poet, and member of the Make it Public campaign group
An illustration of Norm the pigeon by Anjalene Whittier
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How has public involvement informed and influenced this work?
Having worked with other organisations, creating poetry to give underserved communities a voice, (for example see my poem called Basis Leeding Drug and alcohol support by Amander Wellings) I know the power that can be harnessed by creative writing. My neurodiversity means I can be creative easier than writing otherwise. It’s my lived experience; what my brain naturally does. As the Make it Public Campaign group were aware of my skills as a poet, they asked me to write a piece about research transparency and Norm the pigeon was hatched.
What’s gone well, and what hasn’t gone well?
All creativity starts with me thinking ‘I cannot do it!’ With encouragement and support from Will, and an idea that hit me at 2.30am… I realised I could do it. The support meant I realised that my idea was a good one and not completely bonkers. It had wings and could fly the ideas into people’s minds. Will supported me throughout, encouraging my creativity, otherwise I don't think I would have done it.
Not having enough time or skill to create the visuals was challenging. Also working out what I could use that wasn’t copyrighted.
It doesn’t have to be perfect and a PowerPoint to speak to works well. The creativity broke down hierarchical structures, all could relate to Norm and many requoted him.
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In this section, we share news about some of HRA’s work that we think you may be interested in. You might also enjoy exploring the news and updates section of the HRA website.
 Circle Steele, CEO of Wai Yin Society, speaking at the launch of the HRA's strategy
Have you seen the HRA in the news? Earlier this month, Lord O'Shaughnessy wrote a report about commercial clinical trials in the UK. It includes recommendations for the HRA.
What do we mean by commercial clinical trials?
Clinical research aims to find out more about an illness, condition, treatment, therapy or care by directly including people in a research project. Sometimes these projects are run by universities or charities, sometimes they are run by profit-making companies. These are commercial clinical trials.
How has the government responded to Lord O'Shaughnessy's report?
The government's response confirms commitments and funding to speed up commercial clinical trials in the UK, so more people should be able to access ground-breaking treatments that could dramatically improve standards of care, and their health and wellbeing.
You might be particularly interested in two of the commitments:
- establish a common approach to contacting patients about research
- provide ‘real-time’ data on commercial clinical activity in the UK
The first commitment will bring together a group to look at how more people can have the opportunity to take part in a trial, whilst managing public trust around how information and contact details are used.
The second will improve transparency and access to information for patients, doctors and research funders.
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With support from Anne-Laure Donskoy, a member of the HRA's Public Involvement Network, in this section of the newsletter, we introduce you to our colleagues and the people we work with.
Dami is a new Public Involvement Manager and she joined the HRA's public involvement team on 20 February 2023.
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What motivated you to work in this field?
I joined the HRA in 2017 as a temporary staff member, contracted for three months initially. Six years and several roles later, I have now joined the public involvement team as a Public Involvement Manager.
I have always been interested in clinical research and my background in pharmaceutical science (BSc) and analytical bioscience and drug design (post-graduate) demonstrates this. Having spent quite some time in our approvals team attending Research Ethics Committee (REC) meetings and assessing applications for HRA approval, public involvement was a frequent topic in almost all the REC meetings I attended.
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My natural curiosity for learning, as well as finding ways to do things in a better and beneficial way for all, was one of many reasons for joining the public involvement team at the HRA.
What would you like us to know about your work at the HRA?
I love the fact that my job is quite varied, and no two days are the same. The HRA does quite a lot of projects and public involvement runs through almost all these projects. My job is to lead and support public involvement in these projects. Since these projects are usually very varied, with different but competing timelines, I have to be quite organised and prepared to work on several different tasks in a single working day. These variations make my job really challenging but interesting at the same time.
What are the interesting challenges in your work?
The biggest challenge for me is understanding the complexities of our work and figuring how to present information in a way that is accessible to everyone I work with. I am currently working on some projects that involve a mix of stakeholders. I find the collaborative aspects of my job interesting as I get to be involved in many conversations, seeing things from multiple perspectives, and learning new ways of working.
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If anything in this email is unclear or you have questions, please email the public involvement team or phone Kat Evans, Public Involvement Officer on 020 7104 8168. |
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