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Your HRA Public Involvement Newsletter
Edition three, December 2022
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Welcome
Hello everyone and welcome to the third Public Involvement Newsletter.
If you’d prefer to receive this as a text document, you can contact Kat or call her on 020 7104 8168.
In this month’s newsletter
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an invitation to help us plan and evaluate an event about research transparency
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an update about how public involvement is shaping our people-centred clinical research (PCCR) project from Dr Rubi Bhatti and Sarah Williams
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a goodbye from our Public Involvement Manager, Leni Sivey
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an update on the Community Survey 2022
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meet Karen Williams, the HRA’s Deputy Chief Executive and Director of Finance.
Your feedback from last month’s edition
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we received positive feedback on last month’s newsletter, particularly learning about Zoher Kapacee’s work on Data and Artificial Intelligence
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we also received a helpful reminder about barriers to inclusive working including travel, working in person, and long meetings.
We are grateful when members of the public take the time to tell us ways we can improve. On that point, a reminder that you can email or phone us on 020 7104 8168. You might have a question about a specific piece of work, or just want to get in touch if time has passed since we last worked together.
 An illustration of ways of keeping in touch by email and phone
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In this section you can find out about the different ways of working with us.
We currently have two.
Learn about research transparency and help us plan a series of online workshops and talks in March 2023
Transparency in research means making sure the public and research participants are made aware of the results in a timely and meaningful way. This is essential because it builds trust and accountability and encourages future participation in research. It also makes sure that research makes good use of time and money by not repeating studies.
The HRA doesn’t run research. But we work with others to improve research transparency because we believe that trusted information from health and social care research studies should be publicly available for the benefit of all.
Do you have experience of or insights into the ways people are disadvantaged by research not being transparent?
We are looking for two people to support this work. We can offer a fee of £150 per day for around three days' work.
Help us plan for early, inclusive, impactful involvement
We told you about this activity last month. But it has changed!
When it’s planned late, public involvement is less likely to make a difference, and more likely to be a difficult experience. We want to change this.
Every January, the HRA’s directors and heads of different teams (our Senior Management Group) meet to look at draft plans for the work we will do in the next financial year. Proposals are submitted from across the organisation, and the group discuss priorities, overlap, risks and benefits.
We are looking for three people to contribute to a face-to-face and online hybrid planning meeting in London on 31 January. We can offer £150 per day to cover a day’s preparation and follow-up and attending the meeting itself (two days in total).
This is a new way of working for us, so based on your feedback we may identify further areas of work.
If you didn't apply before, you have until 21 December to apply.
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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?
People-Centred Clinical Research Project (PCCR)
The PCCR project aims to improve the way clinical research happens so that more people can take part, in ways that are best for them. It will do this by finding out more from the published literature and from as many people as we can about what matters from their point of view.
The project has developed in partnership with a steering group of eight public contributors and eight members of the research community. Further support has been provided by a team at the University of Lincoln.
Dr Ruby Bhatti OBE, co-chair of the PCCR steering group
How has public involvement informed and influenced this work?
From the outset, the HRA has given mutual respect to Public Contributors in the group. All members I feel have been warm, welcoming, and really want to share their experiences to ensure that the decisions and feedback will have a positive impact on the project. There is true co-production and we are working as equal partners in the feedback and decision making. I am also co-chairing the session, and this is a clear example of empowering a lay member and not dictating or taking control of the meetings. We have been listened to at every stage of the project and the team are truly taking us with them on this journey.
What’s gone well, and what hasn’t gone well?
The group is diverse and includes life experiences and grass root intelligence which is having a great impact on the decisions we are making. Communication is good! After each meeting we have clear notes for those who have not been able to join, so that they can be kept in the loop with the decisions and actions to be taken. It is teamwork at its best!
We are at the moment using virtual platforms which we acknowledge may exclude a cohort of people who are unable to use the virtual platform for different reasons. In order to make the meetings more inclusive, we are looking at different methods but unfortunately due to the timeframe this is proving a little difficult.
What have you learnt?
As a public contributor, I have learnt that one cannot assume that other professionals are on the same page in the beginning of any project. Due to the mutual respect, understanding and the genuine relationships formed for this project, we are all able to speak frankly but still feel we are in a safe space to discuss our opinions and the illnesses we have without being judged. There is constructive challenge by professionals and the public, ensuring the public are at the centre of any final decisions.
Sarah Williams, Deputy Director of Research and Improvement at Solent NHS Trust, co-chair of the PCCR steering group
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How has public involvement informed and influenced this work?
The group has genuinely steered the project and challenged ways of thinking – the use of the term ‘clinical’ for example has been highlighted as problematic. We changed the title from patient-centred to people-centred because not everyone included in clinical research is a patient. Other definitions and use of language has been challenged and changed. The group has co-designed the wording for the survey, the strategy for sending it out to people, and other parts of the project plan. The group has also identified six hallmarks of research we’d expect to see for a study to be considered people centred. The next step is asking others what they think.
What’s gone well, and what hasn’t gone well?
The group is a partnership between the HRA team, research professionals and public contributors. It’s been a fantastic way to work, with equality of voice – the meetings have been lively but constructive and there is no doubt that the project has changed considerably from its initial plan. The group agreed that one of the most important aspects was the difference this was making, and so every meeting the notes reflect what was agreed, and anything that has been changed as a result of the conversations.
What have you learnt?
The key learning is that co-design works and is a fantastically positive way to run a project. Honesty, respect, and psychological safety is key. Also important is an ability to really listen, and to make the changes agreed. That can feel tricky when there’s a project to deliver, but it’s all the better for it. To really shape a project in partnership you have to have the space, time, and flexibility to adapt whilst making sure you can stay on track. This means sitting with a level of uncertainty which can feel uncomfortable but is equally exciting. I honestly can’t wait to see what we produce together.
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In this section, we share news of areas 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.
A thank you from Leni
This week, I’m saying farewell to the HRA after seven years, in order to begin a new role with Blood Cancer UK. I have a real smörgåsbord of feelings about leaving – excitement and nervousness to begin a new adventure, sadness to leave such a smart, thoughtful, kind team, and enormous gratitude to you as network members. It’s been such a gift to do work that aligns with my personal values, and to work alongside such courageous, insightful, and authentic people. I’m sorry that we live in a world where jobs like mine still need to exist, for now. I will do my very best to take everything we’ve learned together with me, and to stay accountable to and focused on rebuilding a more just, equitable system.
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2022 Community Survey
In spring 2022, we developed a short survey, with the help of the Community Insight Group, to understand your experiences working with us and learn about what’s working well and not so well. The survey went to everyone who contributes to the work of the HRA as members of our Research Ethics Committees, the Confidentiality Advisory Group and those who are part of our public involvement network.
Across the three groups we received 301 responses. Thank you for taking the time to answer the questions and provide valuable feedback. A summary of the key findings is now available. We are using the information that you have given to inform the work we are undertaking in partnership with the Community Insight Group.
 Birds eye view of lots of different people standing in a white space. Together they form one large speech bubble.
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In this section, we share news of activities organised by other groups or organisations. If you have questions, please get in touch directly with the organisers.
Asthma and Lung UK’s Respiratory Voices Network
Asthma and Lung UK’s Respiratory Voices Network is made up of around 800 volunteers who help to shape lung research by sharing their lived experiences and thoughts. Members are a mixture of people with lung conditions and people caring for someone with a lung condition. By taking part in activities like completing surveys or attending focus groups, you can make a difference to people with similar experiences. There is no minimum commitment: you can take part as much or as little as you’d like. To find out more, have a look at their website, contact them via email or call them on 0300 222 5800.
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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.
Introducing… Karen Williams, Deputy Chief Executive and Director of Finance
Karen is responsible for our resources directorate which includes finance, business planning and performance, governance, organisational development and procurement.
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What motivated you to work in this field?
I am interested in research, as an intellectual endeavour. For me, it’s more than discovering new stuff, it’s how research can make a fundamental difference to people’s quality of life and wellbeing. My son was very poorly when he was born and is now a very healthy 15-year-old all helped by treatments derived from research and the brilliant NHS.
I am also driven by working for organisations with a social purpose that align with my values.
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I have spent most of my career working in the voluntary and public sectors where I feel connected to the work of the organisation and the difference I can help make in driving forward their mission. Knowing that I’m contributing to a social purpose helps me when things can get hard and messy.
Most of all I like the people I work with at the HRA. Not only does our community provide invaluable insight but it helps me steer the work I do to focus on the things that are important to patients and the public. My colleagues are natural collaborators, ambitious about the difference they can make and great experts in their field.
What would you like us to know about your work at the HRA?
I love the diverse nature of my work. No two days are the same. One day I can be working to develop our business plan, the next I can be collaborating with the Department for Health and Social Care on our offices in Bristol, London, Manchester, Newcastle and Nottingham and the following day presenting our Annual Report and Accounts to our Audit and Risk Committee. I enjoy the balance between innovation, adding value to existing services and ensuring our resources provide the right services for our people and the wider community.
What are the interesting challenges in your work?
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Interconnections: Working in complex systems is interesting and tricky. How we make progress and manage the interconnections of what we do needs careful consideration, including time for reflection, lessons learned, opportunities to listen and share.
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Managing scarce resources well: Working with limited resources and how best to allocate and invest these to get the most impact to deliver our strategy and role as a regulator of social care and health research.
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Partnership working: Creating spaces for people to collaborate, to learn from other disciplines and share different 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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