Background to the Survey
The National Institute of Health Research (NIHR) launched a survey on 1st July 2021 to elicit feedback from those involved in the NIHR’s work and research in 2020-2021.
This survey was an updated version of an NIHR public involvement feedback survey that was co-created with public contributors and conducted in 2019. The 2020-21 survey was drafted and updated by a working group of five public contributors and one NIHR staff member. The NIHR Public Partnerships Programme Board steered the direction and scope, and provided advice on various iterations of the 2020-21 survey. The Programme Board brings together involvement leads and public contributors from across the NIHR.
Survey design
The survey consisted of 24 questions. These were a mix of questions which asked respondents to select answers from options given to them, and questions that enabled respondents to answer in their own words (free text).
People were free to answer as many of the questions as they wanted. This meant not all respondents answered every question.
The survey was entered onto a web based survey software (Qualtrics). The survey was tested, including by 18 public contributors from across the NIHR and its funded programmes; this resulted in revisions to how people could answer the questions (e.g. enabling people to choose multiple roles, creating an additional question asking about the improvements people suggested).
Summary of the Results
Who responded?
There were 819 responses to the survey.
31% of respondents (256 of 818) have been involved in the NIHR’s work and research for 3-5 years, in initiatives across England.
Respondents reported contributing to the NIHR’s work and research as members of the public (33% or 388) or patients primarily (31% or 363). 170 respondents selected more than one option reminding us that people contribute from different perspectives.
The survey respondents were predominantly female (57%), 61 years of age and over, white and heterosexual.
47% of respondents (268 of 565) stated they had physical or mental health conditions, disabilities or impairments (most commonly mobility issues) that limited their ability to carry out certain tasks.
39% of respondents who answered the question (216 of 556) stated they were a carer.
What did people tell us about their experience of being involved?
- Respondents stated they welcomed the opportunities to be involved in the NIHR’s work and research which they felt was important and much needed;
- 79% of respondents stated they were very satisfied or satisfied with being involved in the NIHR’s work (450 of 573 respondents);
- 63% (338 of 541 respondents) stated their involvement had made a difference, with a further 19% stating it had sometimes made a difference;
- Respondents stated they made a difference to the NIHR’s work and research through their lived experience of having or caring for people with health conditions, and/or because of their professional or practical knowledge or experience;
- Respondents provided evidence of being involved in all parts of the research cycle from identifying and prioritising research topics to dissemination and engagement, and also developing public involvement, engagement and participation at the strategic level;
- The majority of respondents (415 of 626) stated staff and researchers considered their individual circumstances when planning how they would work together. This could include planning around caring responsibilities and providing advance notice of meetings and mutually convenient deadlines;
- 65% of respondents (387 of 593) reported being paid for their involvement in the NIHR’s work or research;
- People who had been involved between 3-5 years were more likely to report they had the skills and confidence to contribute as fully as they would like;
- Respondents stated having more experience of being involved which was gained over time or through specific activities enabled them to better contribute;
- Online training followed by workshops were the most common formal learning and development opportunities offered to respondents;
What could improve people’s experience of being involved in the NIHR’s work and research?
Acknowledging the importance of physical meetings
The COVID-19 pandemic had influenced how, and sometimes the extent to which, respondents were involved.
There was general understanding of the need to move to virtual working and some respondents appreciated the convenience of, and accessibility offered by, videoconferencing. However, the majority were eager to have more physical meetings, with some respondents stating these were important to strengthen relationships that underpinned successful involvement. While this may not be able to be addressed during the pandemic, it is important to remember this preference as we plan future approaches to involve people.
Focus on planning, reflecting, and improving how people will work together
There was a relational aspect to successfully involving people that respondents reported was sometimes forgotten. It could be strengthened through trying different approaches to enable everyone to work together and reflecting on how these are working. The UK Standards for Public Involvement could provide a useful framework.
Opportunities to provide and receive feedback
Respondents reported valuing opportunities to provide and receive feedback but highlighted variation in whether these opportunities existed in practice. Some respondents reported they received regular feedback and acknowledgement of their contribution. Others stated that they did not receive feedback, rarely got opportunities to give feedback, or that this should happen more regularly.
Improved processes to claim and receive payments for involvement
Respondents reported variation in the processes that existed to claim and receive payments, stating these needed to be simpler, clearer, or better. This was true among those who stated they were offered payments and those who answered they ‘sometimes’ were offered payments. These respondents described inconsistencies in whether the payments were offered and actually received, variations in rates across geographies, organisations, and for the different work they were involved in. A small group of respondents reported the payment processes were clear and effective.
Capturing and reporting on the difference public contributors and involvement has made
Some respondents stated they did not know if their involvement and contributions had made a difference to the NIHR’s work and research. This could be improved and indeed the difference that is made could be strengthened by capturing and reporting it. Respondents reported that understanding the difference they personally made is useful to help them improve their own involvement practice.
Adequate contact with and information for people who have registered to be involved
A minority of respondents had not been contacted with any opportunities to get involved with some stating they did not understand why this was the case. This could be addressed through timely review of those who have registered to be involved, and ensuring that communication is made with them.
Recommendations
These recommendations aim to improve the quality and effectiveness of public involvement and its influence on the NIHR’s work and research, and how public contributors’ experiences are captured. They have emerged from some of the key findings in this report and from comparisons with the 2019 survey.
The NIHR’s national coordinating centres will use these recommendations to directly inform our continuing work to improve public involvement. The recommendations aim to help people in NIHR funded work and research reflect on how they are involving public contributors and providing direction for its improvement.
Improving public involvement in the NIHR’s work and research
- Continue to promote and implement the UK Standards for Public Involvement “to improve the quality and consistency of public involvement” in the NIHR’s work and research;
- Ensure clear, consistent offers of payment for public contributors’ involvement in NIHR’s work and research, and effective, timely processing of these payments where contributors take these up;
- Support and engage more diverse people to be involved in the NIHR’s work and research to ensure we involve people with a range of knowledge, skills, and experiences;
- Assess what enables public contributors to feel they can contribute as fully as they would like and support them to be effective in their roles;
- Communicate regularly with all public contributors registered to partake in the NIHR’s work and research;
- Trial and share approaches that enable public contributors to see greater impact of their involvement at the strategic levels of the NIHR’s work and research;
- Explore, implement and promote approaches to ensure researchers and research teams provide feedback to public contributors.
Capturing and assessing public contributors’ experiences
- Explore approaches to regularly capture public contributor experiences of involvement in ways that enable the feedback to inform improvements. Such data collection could enable these people to feed back on their experiences from specific activities, geographies, or organisations to provide more actionable information.
- Establish accessible adaptations of the Public Involvement Feedback survey to capture the experiences of more diverse public contributors, including children and young people; people from ethnic minority backgrounds etc.
- Work with diverse groups of people to understand how we can more accurately and inclusively capture demographic data.
If you would like a PDF copy of the full 2021 survey report, please email ced@nihr.ac.uk