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Your HRA Public Involvement Newsletter

Edition four, January 2023

Welcome

A photograph of people working together using laptops and with post it notes.

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 recruit the best people to work at the HRA

Since 2015, members of the public have supported staff recruitment by advising on job descriptions, taking part in workshops, helping to test candidates’ skills, and joining interview panels.  

What difference is public involvement making to the HRA's work?

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? 

Public dialogue about research ethics review

The UK Research Ethics Service (RES), already has a strong reputation globally. But we want to continue to develop and improve.

In 2022, we asked the public what matters to them about research ethics review. The findings from this dialogue have fed into our Think Ethics work.

We put together an advisory group to help ensure that this public dialogue work stays on track and achieves its aim. We also wanted the group to look at the plans and material used for the project, observe some of the workshops, and look at the findings.

Naho Yamazaki, Interim Deputy Director of Policy and Partnerships

How has public involvement informed and influenced this work? One of the Public Involvement Network (PIN) members, who was also sitting on a group advising our Think Ethics work, chaired this advisory group. Two other PIN members also joined the group, along with researchers and REC members. They played a really important role in informing the way the HRA and the research specialist, Hopkins Van Mill (HVM), talks, listens and learns from public perspective on research ethics. For example, it was the public contributors on the advisory group who spotted straight away that the presenters of the workshops were not sufficiently diverse and this needed addressing.   What’s gone well, and what hasn’t gone well?  The public contributors were really helpful in challenging our assumptions and making us check again what we were aiming to find out from our dialogue process. As I noted already, they played a key role in enhancing the format of workshops and materials we used. They also gave us written feedback after observing workshops. Whilst this was really valuable material for HVM, it wasn’t something that we originally asked for and I was concerned that this added to the contributor’s workload. What have you learnt?   We need to make sure that what we are asking from our public contributors are crystal clear at the outset and reiterated along the way. This will help everyone know when certain things are (gratefully received) voluntary contributions. Lynn Laidlaw, Chair of the Public Dialogue Advisory Group, public contributor and peer researcher

How has public involvement informed and influenced this work? I am a member of the Public Involvement Network (PIN) and have been a member of the Think Ethics external advisory group. As part of the project, the HRA asked Hopkins Van Mil (HVM), (a social research organisation), to run a public dialogue about research ethics with members of the public. Many of them used health services and had been involved with dialogues in the past but they weren’t experienced public contributors. I volunteered to help with this project and to my surprise, Naho asked me to chair the public dialogue advisory group. I was both delighted and apprehensive to be asked, but made it clear that I would need support from HRA staff to enable me to do so. We realised that the advisory group would need input from other members of the HRA PIN our first task was to recruit two other members and as a result Louise and Dolapo joined us. The advisory group then worked with HVM to plan the dialogue, and we felt it was essential to pay particular attention to inclusivity and diversity in research, both in the people presenting to the public dialogue group and as a topic. We were also given an opportunity to sit in on the dialogue as silent observers, and I was asked to present a five minute session on Patient and Public involvement (PPI) in research. I took notes on the dialogue sessions I attended and highlighted the themes in the sessions that stood out to me. We then inputted our findings in to the final report from the sessions and presented them to the Think Ethics advisory group. What’s gone well, and what hasn’t gone well? I have since reflected on my experiences and what it meant for me to be involved in this specific project. I could only do so because of the support from the public involvement team and others from the HRA. This felt important as there can be tensions in PPI around what aspects of projects people become involved with. I am involved because of my lived experience but it doesn’t define me. I want to build skills and undertake different activities but have recognised that I need support to do so, and it was great that the HRA recognised this too. I was also very aware of my biases when it comes to research and research ethics, so it was important that I tried to overcome those when helping to plan the dialogue and input into the results.   What have you learnt?  I leant that chairing a group is both challenging and enjoyable. It was also educational and fascinating to be involved with the process of running a public dialogue.  I often say that patient and public involvement is built on relationships, conversation and collaboration. It's these three elements that stand out about my experiences. Chairing the public dialogue advisory group built on the existing relationships I have with HRA staff and enabled me to build more with other group members. It felt great to be able to collaborate with HVM and others to facilitate the necessary conversations with some members of the public about such an important topic, namely research ethics. Find out more If you’d like to know more, you can read the report and related blogs by members of the public who supported this work: Public conversations about ethics review – a blog by Louise Vale, HRA public contributor - Health Research Authority and Let’s talk about ethics review - Health Research Authority (hra.nhs.uk).

HRA News

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. 

Share your feedback and help improve clinical research

Every day clinical research is being carried out on a specific illness, condition, treatment or therapy, the results of which could help save lives.

The Health Research Authority (HRA) is working in partnership with members of the public, the research community and the University of Lincoln to improve the way clinical research happens so that more people can take part, in ways that are best for them.

We have defined this as clinical research that is more ‘people-centred’.

As part of the People-Centred Clinical Research project, we have created six proposed hallmarks that they think research will show when it has people at the centre of its design and conduct. 

We now want to know what you think and are asking you to share your views and experiences in our online survey.

The survey closes on Friday 17 February 2023.

If you have any questions or would like to request information in a different format or language, please email the communications team. 

Help us build a website that is fit for your needs

For many people interested in health and social care research, our website is a vital source of information. However, recent feedback tells us that it can be difficult to understand who we are, what we do, and why we do it. Therefore, we are now building a new website primarily for the public and we need your help!

We want to build a website that is fit for your needs so we are looking for volunteers to get involved in the user testing of our new website as we build it. This will include looking at the structure of the website, how easy it is to find your way around it and how information is presented. For example, we may ask you to take a certain journey around the website, which will help us understand what worked, what didn’t, and what can be improved.

Whether you have had much experience with the current website or none at all, we would love for you to be involved. It can be as little as half an hour. Most of the sessions will be virtual but some may be face-to-face, so it’s completely up to you which one you want to take part in and how much time you want to dedicate to it.

As we need to maintain the independent regulations of the user testing, this will be a voluntary opportunity and, therefore, we will not be able to offer any payment.

If you have any questions, please don’t hesitate to email the public involvement team. 

Two people looking at a laptop together.

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. 

Do you know?

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… Lara Vecchi

Lara is the new Public Involvement Officer working on the development of the new HRA website.

What motivated you to work in this field? I am passionate about working directly with people within health. I spent many years working with many disability-led and disability-focused charities providing advice and supporting them across different aspects of their health. Listening to people's stories every day, I became passionate about advocating for disabled people's voices to be heard and be part of the conversations that will directly impact services.

I spent the past few years working and volunteering for charities and the NHS where I had the opportunity to work with people of all ages and backgrounds, supporting people with lived experience to be involved directly within the planning and strategy of the service delivery.

I am also excited to be part of the HRA because of my passion for research. In fact, during my Master of Philosophy in Health, Medicine and Society, I had the opportunity to conduct a research study into people’s understanding of their own health, labels they used, and how the language used to describe their own health had been shaped by the services they received.

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

I find my role exciting because it is focused on a specific project, the development of the new HRA website. My role in the project is to ensure the public are included through different project workstreams. Working closely with the public and the public involvement team at the HRA, I will ensure we have a continuous stream of public-led feedback and recommendations across every aspect of the project. Having the public involved in all aspects of the project will allow us to be transparent and fair about the decisions we are making.

What are the interesting challenges in your work?

Designing and building a website is a challenging project, with many different aspects to consider which are often difficult to understand for people who are not familiar with website development. However, I have chosen two significant challenges that I will focus on:

• accessibility: involving the public in all aspects of the project means ensuring everyone involved understands the different stages of the project and the terminology used. It is important that clear language is used throughout and all jargon is minimised as much as possible. I will aim to explain the different aspects of website design/development as we go along so involvement is accessible to all.
• diverse needs: we all have different ideas about what the new website will look like, how it will function and how information is presented. By providing opportunities for the public to feed in through regular and ad hoc feedback, we will have the opportunity to understand how we can build a website that can meet as many diverse needs as possible.

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.