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Your HRA public involvement newsletter

Edition seven, April 2023

Welcome to the seventh 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.

A photograph from the public involvement workshop at HRA's strategy launch in June 2022.

Get involved in the work of the HRA

In this section you can find out about the different ways of working with us.

Help us write new guidance

We have been working with the Medicines and Healthcare products Regulatory Agency (MHRA) to engage with stakeholders on the regulations of clinical trials and we were pleased to see them publish the government’s response.

Our job now is to work with patients and the public, researchers, commercial and non-commercial research funders to inform new legislation and guidance that will make it easier to do high quality clinical trials that people can trust.

Read our response and our future work on clinical trials regulations on the HRA website.

How to better involve people in the design and delivery of clinical trials

Last month, we mentioned that we would be looking for people to help us with two different sets of guidance relating to this legislation. The first guidance that we are writing is about how to better involve people in the design and delivery of clinical trials.

We expect that this work will involve up to eight monthly meetings with reading, writing and reviewing this in between meetings. We are looking for people who have experience of being involved in the design and delivery of more than one clinical trial.

We can offer involvement fees of £75 per half day and £25 for shorter tasks. If you are interested in being part of a group writing and reviewing this guidance, please let us know by 12pm on Wednesday 26 April 2023.

Could you help us to support researchers to increase participant diversity in research?

The second set of guidance is about helping researchers make sure that they recruit a diverse group of people to their trials, that reflects the population that can benefit from the research.

We are looking for:

• two people to work with researchers, sponsors, research ethics committee members, and members of staff from the HRA and MHRA to review draft guidance and provide feedback on some questions at three workshops which will take place in May and June
• people who have experience of been involved in engaging with underserved groups to help them take part in research

We can offer involvement fees of £75 per meeting to cover preparation, taking part in meetings and feeding back between meetings.

If you are interested in being part of this group, please let us know by 12pm on Wednesday 19 April 2023.

Upcoming opportunity to join our Community Committee

Are you interested in helping shape how we make it easy to do research that people can trust?

We want to involve you to help us to make better decisions and ensure that health and social care research is done with and for everyone. Our strategy, ‘Making it easy to do research that people can trust’, sets out our ambitions:

• to make better decisions by working with a diverse group of people with a range of lived experiences
• to make sure that anyone who wants to get involved in research, is able to do so

In November 2022, we asked for your views on the best way to do this. 

Following the consultation, we are making plans to form a new Community Committee that will be a part of our governance structure and will report to the HRA board. The Committee will increase the role of the HRA Community in the HRA’s governance, ensuring that your views inform what we do. 

We will share full details in our May newsletter but until then you may like to find out more about the committee and how you can get involved on our website.

HRA news

In this section, we share news about things we are working on that we think you might be interested in. If you’d like to read more about what we’re currently up to, head to the news and updates section of the HRA website.

Shared Commitment - one year anniversary

On 11 March 2022, 12 organisations shared a commitment to embed public involvement in social care and health research.

Public involvement is important, expected and possible in all types of health and social care research.

Collectively, the organisations fund, support and regulate health and social care research. They made a joint commitment to improve the extent and quality of public involvement across the sector so that it is consistently excellent.  

One year on, four more organisations have joined, including NHS England.

You can read more about our Shared Commitment to Public Involvement on our website.

The National Institute for Health Research (NIHR) Involvement celebrate the Shared Commitment. Watch this video from Ify Sargeant, patient and public contributor.  Take a look at our website to see the blogs and videos from people who are involved.

A young woman working at a laptop with headphones in. Text on right says 'Step forward and help review proposals for new life-changing research. HRA logo top right and #StepForward.

#StepForward campaign

The HRA is looking for people to #StepForward and become a member of our Research Ethics Committees (RECs).

Our REC members are volunteers who meet virtually to review exciting new research studies for some of the biggest challenges in health and social care including cancer, dementia and COVID-19.

It's important that our committees have insight from different perspectives, so we're particularly looking for people who have never been involved with research before and those who haven't had any professional or advisory healthcare experience. 

Members are provided with regular training and support and it's a great opportunity to work with people from a range of backgrounds and to learn new skills. 

Find out more on our website or email member recruitment (member.recruitment@hra.nhs.uk).

We are working hard to spread the word through our networks and contacts. If you know a group or organisation that might share information in its newsletter or on social media, let our communications team know (communications@hra.nhs.uk).

Public involvement news from outside the HRA

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. 

Research Abilities - support for researchers

The Research Abilities group gives researchers across the UK the opportunity to discuss their research ideas and plans with a group of people with learning disabilities. The group can help researchers to make their research more accessible and inclusive. They do this in a number of ways, such as choosing a research topic, creating research questions, thinking about how to collect information, and writing a plain language summary. 

The group meets every month. Researchers can meet the group in person in Gateshead or have a meeting on Zoom. 

The group have created a short video about how they work with researchers. You can find this online.

For more information about costs, timings and support, please contact Rachel Arkle (rachel.arkle@nihr.ac.uk) or call on 07871 734 343.

National Co-ordinating Centre for Public Engagement (NCCPE) are recruiting for advisors and associates

NCCPE is recruiting for several new roles to develop and support more inclusive engagement, with a particular focus on race equity. 

NCCPE is based at the University of the West of England in Bristol. They seek to support a culture change in the UK higher education sector. 

For NCCPE, engagement is defined as sharing the activity and benefits of higher education and research with the public. It's a two-way process, involving interaction and listening, with the goal of generating mutual benefit.

These roles involve working with the NCCPE to challenge and problem solve issues relating to race equity in engagement, both within their organisation and in the wider UK higher education sector.

Payment is offered at different rates. For example, £250 for advisory group meetings, which include preparation. Associates are offered £350 to £600 per day, depending on experience. The work will take place over email and in Zoom meetings. 

Learn more about these opportunities and apply by 10am on Monday 17 April.

For more information, contact Alyssa Chafee (alyssa.chafee@uwe.ac.uk) or call on 0117 328 1887.

Do you know?

In this section of the newsletter, we introduce you to our colleagues and the people we work with.

Introducing Rose Payne, a member of the Confidentiality Advisory Group (CAG). The Confidentiality Advisory Group (CAG) is an independent body which provides expert advice on the use of confidential patient information without consent for research and non-research purposes.

The group consists of 28 volunteer members who generally meet every two weeks (about 10 members per meeting). Everyone in the group volunteers their time to make sure that patient information is used legally and in the public interest. Some members bring experience of healthcare as a service user, patient or carer, and other people bring professional experience in information governance, healthcare, or research.   

Rose Payne is a CAG member and shares their experience of what it’s like to work with CAG.

What motivated you to work in this field?

I originally chose a career in the public sector due to the huge potential for impact, supporting improving public services for everyone, but particularly for those facing the greatest inequalities and barriers to having a healthy and happy life.

In my career as a Digital Consultant, choosing to work predominately with a range of NHS and local government organisations, I’ve seen the huge potential for data to shine a light on some really thorny issues, and to identify those who most need additional support.

However, when making such important decisions that affect people's lives, not just their health, the importance of trusted stewardship of the information organisations hold about individuals’ experiences, life stories, and needs, cannot be underestimated. I see building public trust as a key part of the role that groups like the CAG can play.

What would you like us to know about your work with the HRA?

When I talk to friends, family, and colleagues about my role with the CAG, I tend to stress that a huge part of the role is enabling better, safer, use of data which is really informed by the patient and public voice. A large part of this is the role the team play in working with and supporting applicants with their application – there’s a real educational side to the work we do at CAG.

For me it’s always fantastic to hear about great patient and public engagement that applicants have used to inform their approaches, potentially in part to support their CAG application, but equally due to the wider acknowledgement of the importance of the public voice.

What are the interesting challenges in your work?

Even over the course of my time at CAG, which is relatively short compared to some members, one of the most interesting challenges has been the changing role and definition of the ‘Direct Care Team’. Where the ‘Direct Care Team’ use identifiable patient information for research, an application to CAG is not necessary, but if the identifiable information goes outside without consent, an application is likely. However, whether an individual accessing data is considered to be part of the ‘Direct Care Team’ is a grey area depending on the specific circumstances involved. This will be an ongoing question as how healthcare is delivered, and so who is considered to be part of the ‘Direct Care Team’, continues to evolve.

Quite a lot of my work as a consultant is in the population health management space, helping organisations understand how they can use data to better understand the population they serve and inform more proactive, preventative, provision of care. I see us grappling with this challenge more and more in future. For example, at what point might we start to consider an analyst, or more likely a care coordinator, a member of the ‘Direct Care Team’, alongside doctors, nurses, and allied health professionals.

If anything in this email is unclear or you have questions, please email the public involvement team on public.involvement@hra.nhs.uk or phone the team on 020 7104 8168.