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Your HRA public involvement newsletter
Issue 21, July 2024
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 Question and answer session at a HRA event
In this month's newsletter
Welcome
Hello everyone and welcome to your public involvement newsletter. To subscribe and to see previous issues of the newsletter, please visit the HRA website.
We have created a text-only version that should be easy to print. You can also view the newsletter as a webpage. Click on the link at the top of this newsletter and zoom in using the ‘Ctrl’ and the ‘+’ symbols.
For support with this, or if you need the newsletter in a different format, you can read our guidance, email the public involvement team at public.involvement@hra.nhs.uk or call on 0207 104 8161.
If there is something you'd like to include, or learn more about, do let us know.
New UK government
As an arm’s length body of the Department of Health and Social Care, we paused some of our communications in the run up to the general election, including the public involvement newsletter.
Now the election has taken place and a new government has been formed our communications will return to normal. We look forward to working with the new government and we’ve written about some of its plans and commitments to support UK research on our website.
In this month's newsletter:
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In this section, we give a short update on some of the involvement activities we have in progress and share new invitations to get involved in our work.
 Graphic with photograph of hands and the words Our Community Committee
In the last two months, sixteen members of the public informed and influenced different aspects of the HRA’s work. Activities included:
- three people took part in a workshop to help select a new visual identity for the HRA
- five people attended our Community Committee, discussing subjects such as the results of the HRA’s recent community survey, the HRA annual report and how the HRA should enforce standards to earn people’s trust in research
- one person gave their feedback on our response to the consultation on the Declaration of Helsinki. The Declaration of Helsinki is a statement of ethical principles for medical research involving humans, including research on identifiable human material and data. It was developed in 1964 by the World Medical Association (WMA) and is regarded as the most important document in the history of research ethics
 Three speech bubbles with a sad face, happy face and neutral face
We want to increase public involvement in how we make decisions and this means working differently and trying new things.
If you're involved in the work of the HRA and your experience isn't what you expected, or something has gone wrong, please get in touch with your named contact. If you would like to raise a formal concern, we have a procedure for dealing with these.
We welcome all suggestions and feedback to help us keep improving.
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In this section, we aim to respond to one of the questions we're asked the most – how has our work improved things for other people?
At this year’s R&D Forum, HRA staff and two public contributors involved in the Shared Commitment to Public Involvement group delivered a workshop, disseminating information, stimulating discussion, and listening to delegates.
The R&D Forum is a UK-wide, self-funding non-profit organisation, that connects, supports and represents those in R&D roles who enable healthcare research and innovation to happen in the UK. Its members play a key role in day-to-day involvement of the public in research.
The Shared Commitment brings together staff and public contributors from organisations involved in health and social care research to improve public involvement.
By ‘public contributor’ we mean someone who offers their independent views, based on their lived experience, to help inform, shape and challenge health and social care research.
Eirwen Malin, public contributor, and Becky Purvis, Director of Policy and Partnerships, reflect on their experience of working together.
Eirwen Malin, public contributor
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'A small team of two HRA staff and two public contributors co-created the design and delivery of the workshop for R&D Forum 2024.
'An initial workshop plan changed significantly, reducing the presentational aspects to favour hearing from delegates about the practical day-to-day issues.'
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Becky Purvis, Director of Policy and Partnerships
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'Bringing together lots of people to share views and experiences is hugely valuable.
'But it is no small ask for those of us with health conditions or caring responsibilities to travel to and take part in a busy conference.
'We all need to be considerate of what it takes to participate in events like this and what we can change to make this better.'
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In this section, we share news about some of the 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.
 Illustration of a computer screen with an online meeting and chat bubbles
We are opening five spaces a month for members of the public to observe one of our online REC meetings.
If you are involved in health and social care research, this is an opportunity to learn how meetings run, and the kind of issues a REC discusses. We aren’t offering any involvement fees for this activity.
What happens at a REC meeting?
RECs review proposed research projects that will take place in the NHS or social care. Their focus is protecting the rights, safety, dignity, and wellbeing of research participants. Our RECs review research proposals and give an opinion about whether the research is ethical. Researchers usually attend the meeting to answer any questions raised by the REC.
What do I need to know?
To decide if this learning opportunity will be useful for you, we suggest reading the detailed information on our website and considering the following points:
- the meetings take place on Zoom so you’ll need an internet connection, a device (phone, tablet or laptop), and to be in a private area where the meeting can’t be overheard
- the meetings usually run for three or four hours but you don’t need to stay for the whole meeting
- we will share the meeting agenda with you, but not the application documents so we can maintain confidentiality for those applying to us for an ethical opinion
- there may be quite a lot of technical information, but you don’t need to understand the detail to find the observation interesting
- we can only accommodate two observers per meeting
How do I arrange the observation?
If you’re interested, please email the public involvement team on public.involvement@hra.nhs.uk using ‘REC observation’ in the subject line of your email. If the five spaces fill up quickly, we will keep your email address on record and contact you in future.
In your email, please do let us know your motivation for observing a REC and let us know if you have any access or support requirements you’d like us to share with the team arranging the observation.
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In this section, we share news of activities organised by other groups or organisations. To find out more about the activity, please contact the organisers directly.
To include a news item relating to public involvement in health or social care research, please email the public involvement team at public.involvement@hra.nhs.uk
 Image from the best practice guide
Made By Mortals has released a new guide to best practice when working with community champions in research.
The guide is designed for researchers and others interested in fair and meaningful public involvement and engagement with under-served communities.
It includes audio insights from community champions explaining what is asked of them, the barriers they face in their role, and how these barriers can be overcome. The guide was co-produced with community champions and includes top tips informed by their learning.
Community champions are known by many different names: Community Connectors, Community Leaders, Community Researchers, Peer Researchers to name just a few.
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The HRA is organised in four different directorates: Approvals Service, Digital, Policy and Partnerships, and Resources. This month, we are shining a light on the work of the Approvals Service.
 Members of a Research Ethics Committee
The HRA Approvals Service is the largest Directorate in the HRA. It is made up of distinct teams who work together to deliver our responsibilities under the Care Act (2014) with particular reference to the coordination and standardisation of research practices in health and social care, and provision of the Research Ethics Service in England.
Led by Dr Janet Messer, supported by Jonathan Fennelly-Barnwell the Deputy Director, the Approvals Service is responsible for:
- delivering HRA Approval, which brings together the HRA's expert assessment of governance and legal compliance needed to run a study in the NHS, with the independent ethical opinion by a Research Ethics Committee
- recruiting and supporting our community of nearly 1,000 committee members
- supporting the Confidentiality Advisory Group (CAG) and advising on the special legal basis for use of confidential patient information without consent
- working with the devolved administrations, other regulators, and professional bodies on regulatory policy and process to create a simpler more streamlined environment for high quality research, with appropriate levels of regulation and transparency
- leading the HRA’s involvement with the Department of Health and Social Care’s Recovery, Resilience and Growth programme, which is the managed recovery and development of the UK’s portfolio of clinical research
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If anything in this email is unclear, you have questions, or would like to suggest something you'd like to learn about, please email the public involvement team at public.involvement@hra.nhs.uk or phone the public involvement team on 0207 104 8161. |
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