The final part of the HRA strategy launch event on 8 June 2022 was a public involvement workshop.
The idea for the workshop came from a working group of members of our Public Involvement Network and HRA staff. The workshop was co-hosted by Circle Steele, member of Black, Asian and Minority Ethnic Research Advisory Group (BRAG) | Vocal (wearevocal.org) and CEO of Wai Yin Society and Matt Westmore, CEO of the HRA.
This is a summary of the feedback from the nine different discussion groups which took place during the workshop. Each discussion group focused on one section of the Include part of the HRA strategy, sharing insights and ideas for how the HRA should work to deliver these.
There are ten feedback themes summarised in this document, which are:
- recognise how the way you work includes some people and excludes others
- do things differently
- get visible, get uncomfortable
- be accountable and honest
- make it easier for people to shape research
- including everyone is everyone’s responsibility
- be up front
Ask you what you want research to look like and act on this
- reach people who don’t know about research
- make research start with people
- raise up what exists, build what’s needed
Once people who were part of planning, running, and taking part in the workshop have seen this summary, we’ll turn it into something to share publicly on the HRA website and present it to the HRA Board to discuss how to turn the feedback into action.
Involve you in the HRA
We can make better decisions by working with a diverse group of people with lived experience and making sure that anyone who wants to can get involved.
We will:
- increase public involvement in how we make decisions
- listen to and involve a diverse group of people in our work
- talk in a way that everyone can access and understand.
Feedback from the workshop about this part of the strategy:
Theme 1: recognise how the way you work includes some people and excludes others
People need to feel like themselves to get involved. Reflect on what messages you send out in how you interact with people:
Environment: the location and image of a corporate setting have a big impact on who feels welcome, comfortable, supported and enthused. When people think about research they are likely to think about labs. Some organisations have innovative ways of making environments more friendly and suitable for the people using them, e.g. wards for people with dementia which are designed not to feel like a hospital setting.
Communication: think about the unspoken messages you send when you share information. Pictures are a shorthand language, and posters can be really effective at inspiring people to get involved with something…but it can make a huge difference whether the people represented are e.g. in joggers or a Prada suit.
People: it’s important to be able to relate to people. If someone speaks the same way I speak or shares some of my experiences I’m more likely to want to get involved in their work than if they are ‘too posh’ or we don’t have much in common.
Theme 2: do things differently
Remove the barriers that make it hard for people to work with you. Make it easier for people to get involved online. Remove the physical barriers to getting involved in person. It has felt in the past like the doors have been closed in public involvement. Have a named person who will always respond to emails. Work with people in ways that work for us (e.g. via email or WhatsApp or phone, and as regularly as works for us).
Talk in a way that everyone can access and understand. Use simpler language and less jargon.
Make sure HRA staff have the skills to engage with people meaningfully.
Remove job titles from discussions and break down structures so we can just engage as humans. Body language matters! Courses can help. Make sure staff have the skills to engage more, really listen, and earn our confidence that our voice is going to be heard and something will be done with our input.
Theme 3: get visible, get uncomfortable
Go out and be more visible to the public. If you don’t already work in research, you wouldn’t know the Health Research Authority exists. Engage with community groups and people from different areas. People need to know what they can be part of.
Expand the areas that you go to – get uncomfortable! Reach out more to groups and communities so that the people who shape the HRA are more demographically diverse. Organise team activities which involve learning or spending time with different communities in order to understand how to communicate with different people well.
Decide to prioritise working with excluded people. Work with younger people, older people, people with disabilities, and a more ethnically diverse range of people. Do it properly so people don’t feel excluded or out of place by being the only person in the room with their background, situation or experience.
Theme 4: be accountable and honest
Let people opt in to working with you. Manage the relationship and people’s expectations appropriately. Make it clear what the Health Research Authority can and can’t do, so that people know how to work with you to make change.
Don’t leave dead air. Create and sustain an ongoing conversation rather than a one off. Acknowledge that some things take time to put into action, but don’t leave a long gap before reporting back on what’s happened as a result of the work.
Be ‘a beacon of sharing’. Publicise what you’re doing yourselves and with others. Be up front with people about what you’re hearing and how it’s going to influence you.
Include everyone in research
Meaningfully involving people in all stages of research and sharing its findings is crucial to earn people’s trust. It helps us do better research that can improve care.
We will:
- push for change to increase diversity and inclusion in research
- increase public involvement in research
- make transparency the norm for research
Feedback from the workshop about this part of the strategy:
Theme 5: make it easier for people to shape research
Make it easier for people to find their way through the research world. It can be difficult because there are so many different organisations, which don’t always join up well and aren’t very diverse.
Work with others to put more support in place for public contributors. Who can people turn to if things go wrong with their involvement? There’s no HR or central support for public contributors.
Help the public understand how public involvement works. Show what it means in practical terms, and what its value and impact are. This will raise awareness and improve the quality of public involvement. Tell the stories of successful public involvement with easy examples people who haven’t taken part in research can relate to. Work with funding bodies to include a description in the final reports about studies about how public involvement has made a difference.
Theme 6: including everyone is everyone’s responsibility
Everyone has the right to be involved in research. Involvement opportunities need to be broader and shared more widely so more people are aware of them. Public involvement should be a mandatory part of going through the ethics review process.
We need more funding and resources for community partners in order to help increase the diversity of people who shape and take part in research.
Researchers should go to underrepresented populations instead of expecting members of those communities to come to them. They should think outside the box and work with people in engaging and entertaining ways. It’s particularly important to make people from vulnerable or under-represented groups feel more comfortable. Not everyone thinks of themselves as having ‘lived experience’ (e.g. lots of young people think this doesn’t describe them), and public involvement doesn’t have to happen through formal public involvement groups.
Theme 7: be up front
Honesty matters. Sometimes people have bad experiences of being involved in research because it’s been carried out as a tick box exercise. This puts us off from offering to share our insights for future research. There needs to be an honest conversation about research culture and the value that public involvement can bring. Maybe research isn’t fit for purpose if researchers can’t involve a diverse range of people to shape it.
Evidence matters. Use your influence to make sure research captures and shares information to measure whether it has been inclusive or not. Follow up and evaluate the Shared Commitment initiative to review what it has achieved. Researchers should have to feed back to public contributors or service users about how our involvement or feedback has made a difference to how they do things, so that we can tell we’ve been listened to and change has happened in response to our input.
Ask you what you want research to look like and act on this
Research must address the issues that matter to you to earn your trust.
We will:
- champion issues that are important to people in research
- create public conversations about research issues that matter to people
- encourage researchers to do a better job of putting people first
Feedback from the workshop about this part of the strategy:
Theme 8: reach people who don’t know about research
Get out into communities. Lots of people think of research as white coats and labs. Go to the places that people are, don’t expect us to come to you. Research can feel like (and be) a closed door to the general public. Build trust by reaching out. Word of mouth is powerful. Find ways to meet people where they are in their communities, in spaces which aren’t about research. Use research vans, posters, leaflets, or targeted advertising. Hold interactive days that promote local research. Think about GP practices, universities, community centres, schools, employers, prisons, hospitals, food banks, pharmacies, and recruitment centres. Help researchers understand how to do this too.
Help people understand research. Research is highly academic, and that can put people off. ‘Research’ can mean different things to different people and cultures, which can be part of why people don’t want to take part in it. Explain how the Health Research Authority defines research. Provide training and support so research can be shared with people who don’t have scientific or academic experience. Always use plain language and avoid jargon. Different types of media (e.g. TED talks) can help people connect with research more easily.
Theme 9: make research start with people
Include us in the big conversations. For example, there should be a public discussion about whether more research should be set up so that it’s something people are included in and need to opt out if they don’t want to take part (instead of being invited to opt in to taking part).
Research questions should start in the community. In order to build people’s trust in research, what gets funded needs to reflect what matters to us, rather than research being designed to meet funding requirements or grow careers or institutions. Use your influence so that all research starts from public involvement so that it has as much impact as possible. Amplify the voices of groups which advocate for communities.
Make sure there’s follow through. Give public contributors a seat at the table at ethics committee meetings, and make sure researchers share study findings with people who have taken part in a timely way.
Theme 10: raise up what exists, build what’s needed
Work with others who have expertise, experience and power. Lots of researchers interact with the Health Research Authority, but you don’t have to have all the answers. Signpost people to charities, NHS R&D, and established public involvement networks. But also find out where there are gaps that need filling, like providing training for researchers going through the application process.
If you have questions, comments or suggestions about this summary, please share them with us by emailing the engagement team.