In 2021 and 2022, we surveyed the thousands of people who support our work to learn about their experience of working with the HRA. The survey was shared with people who:
- are members of a Research Ethics Committee (REC)
- are members of the Confidentiality Advisory Group (CAG)
- inform and influence the HRA’s work by taking part in public involvement activities
The surveys help us better understand the level of support you receive from us, and how satisfied you are more generally with your involvement. This information is used to make plans around what we should continue, stop or start to do, and think about where we need to improve.
The results of both surveys were discussed with the Community Insight Group at the time and used to create an action plan.
What did we learn from the surveys and what have we done differently?
The public involvement team has reflected on the results from both years and what we have changed since then, on the back of the action plan. Specifically, the team has looked at the data from respondents who inform and influence our work by taking part in public involvement activities.
In 2022, 91% of public involvement members said they were satisfied, which is exceptionally high. In the same year, the experience of working with the HRA was generally positive and 91% of people said they would both recommend it to others and would be likely to continue their involvement. This was brilliant to see, and we recognised how important it was to maintain what we were doing well, as well as identifying areas where experience could be improved.
We identified general areas for improvement and below, you can read about how we have been trying to make a change. Where we decided not to address an issue, we have explained why.
In 2022, only 64% of public involvement members felt that their work made a difference. We believe that this feeling can sometimes come about when there is a lot of activity (such as meetings and emails) but then the work is not taken forward. This can be due to a number of reasons, for example a changing budget or a change in government policy. Sometimes, it might be because we involved people very early in a piece of work but weren’t able to take it forward because it wasn’t the right time. It can be hard to know and manage what issues might come up, but we have taken steps to try and help:
- once a month, in our public involvement newsletter and on our website, we publish a reflective piece titled ‘what difference is public involvement making to the HRA’s work’. Members of the public and staff write about what worked well, less well and what they learnt during the project
- we aim to have an update and feedback session after all projects have finished. But we need to do more to share this expectation with everyone that works at the HRA, so it always happens, no matter what project you’re involved in
In the 2022 survey, some REC members mentioned workload as a concern. Through discussions with the Community Insight Group, we learnt that for public involvement activities, knowing what to expect was more important than the amount of work to do. Some of the changes we have made are:
- when we share an invitation to get involved, we now include more detail under the subtitle, ‘what’s involved’, to try and explain more clearly what to expect in terms of preparation or during the involvement activity. For example, if it involves reading a lot of papers or being part of a large group discussing technical questions
- once an activity has begun, if additional tasks are suggested, we aim to make it clear that these are always optional and there is no pressure to get involved
- we always invite more than one person to be involved in groups, workshops, meetings and activities. In doing so, we can reduce the pressure on the members of the public we work with should they need to step back for health reasons or prioritise other commitments. This isn’t something we currently do for involvement in interview panels, so this is an area we will look to explore in the future
Support and training
In the 2021 survey, 79% of people across all groups knew where to access the information needed to carry out their role. 82% of people across all groups felt able to talk to the HRA staff supporting them. For those that felt this needed to be improved, we have:
- prioritised providing in depth briefings for each activity or project to make sure that people have the information they need to get involved in specific tasks
- in briefing documents and meetings, we try and make it clear who the main point of contact is, and who people can get in touch with if something goes wrong, they need more support, or the experience isn’t what they expected
- we will be working on creating a wider involvement induction for anyone who gets involved in the HRA's work and will be involving the public to help create this
Across all three groups, the demographic data collected in 2022 showed that, of those who responded, 61% are female, 87% white and 75% are over 55. In 2021, 61% of respondents agreed that the HRA is committed to creating a diverse and inclusive organisation. We want to make working with the HRA more inclusive, as well as being more visible to people whose perspectives and experiences may not be shaping our work at the moment. Some work we have already done in this area includes:
- the Community Committee has given feedback on a draft ‘ways of working’ document that will be published later this year. It describes what people can expect from the HRA and what we expect so everyone we engage with is treated with dignity and respect
- we are building relationships with community organisations to exchange information on our work, looking for shared ambitions and ways we can support each other
Sense of community
In 2021, we asked members about the sense of community, both within their membership groups and with the wider HRA. Only 26% of those who take part in public involvement activities feel a sense of community with their own group and a third (31%) agree they have a sense of community with the wider HRA. It will be important this year to understand if feeling a sense of community is important and needs to be a future focus. Activity and plans to date are:
- members of the public have taken part in activities such as business planning and staff recruitment alongside REC, CAG and members of Staff Voices group. We have heard that this has been a good opportunity to meet and understand more about each other’s work
- we will share more information about how to observe a REC or CAG, to learn more about this important work
- we haven't prioritised building a sense of community through social activities, as we don't know if this is a priority for those who get involved. Social activities can be costly and take time to organise, and it can be hard to plan social activities that are inclusive and interesting for everyone. This is an area we can revisit to understand its importance in future
The next 2024 HRA community survey is due to launch at the end of January 2024. It’s currently being developed in partnership with members of our Community Committee. We look forward to seeing if and how the changes we have put in place have made any difference to people’s experience of being involved with us, and to gaining a better understanding of where we still need to improve. We will once again look at the results in depth, with members of our Community Committee, to create an action plan of steps we will take on the back of the results.