Strengthening Regional Infrastructure for Engagement
The National Institute for Health Research (NIHR) understands that some communities find it hard to get involved in health research. It wants to understand how to strengthen the infrastructure that supports community engagement. Humber and North Yorkshire (HNY) is home to people and communities with very poor health but is also the part of Yorkshire and Humber that has the least contact with health and social care researchers.
This collaboration between the HNY voluntary sector, the public and NIHR public involvement workers from the wider Yorkshire and Humber region aimed to start a new relationship between the NIHR and this underserved area, to begin to understand existing networks and to co-design a draft Framework for Community Engagement, that has the VCSE sector at its heart and closely links research with the new HNY Health and Care Partnership (HCP).
In focus groups, researchers, members of the public and communities and charity leaders discussed how they currently work with each other to undertake research and the problems they face. They talked about the engagement teams and networks that are already in place and how these might be ‘joined up’ by a regional Framework.
Participants described their challenges in engaging with communities about research but were enthusiastic about the possibilities and opportunities that a Framework might support, such as collaborations between regional academics, communities and partners within the HCP. An ambition for the region of high-quality research that includes community driven research questions and local evaluations of new ideas was discussed, with clear agreement that research must make a difference to communities and to health and care services in the region.
These focus groups were followed by a co-design event to agree working principles and to begin to understand what the Framework would look like in practice. The information from this event was used to write a draft Framework.
The next steps for this project are to continue to discuss the Framework ideas with the HCP and more research teams and VCSE groups in HNY. The Framework will need some funding to make it work, including people to build relationships with communities and to link communities with researchers. Finally the team will look for opportunities to put the Framework into practice, to test it and see if it will increase contact between researchers and underserved communities, and ‘join up’ and if it will improve the quality and usefulness of research in the region.
Mapping Regional Infrastructure for Public Involvement
In this project I was asked by the National Institute for Health Research (NIHR) to understand the existing public partnership networks within 3 regions in England. I used on-line searches and discussions with regional public involvement teams.
It was very difficult to find consistent information in the 3 regions because there was no central point where information is recorded and NIHR networks were very variable within regions. Outside of the NIHR, different language for public partnerships makes finding information more complicated. In interviews teams described other challenges that might work against setting up regional public partnership networks, such as a lack of PP workforce and no current incentives for working together
The review proposed that additional resource needed to be provided to regions to build PP networks.
Read the full report here: Smith Jan 2022. Mapping of Regional PPIE Infrastructure and Networks: Pilot
Increasing Public Diversity on National NIHR Funding Panels
The National Institute for Health Research (NIHR) knows that there is a lack of diversity in its public contributors (PCs) within its national funding panels. This review wanted to see if the existing regional NIHR Infrastructure programmes might be a way to support an increase in the diversity of the public members on national funding committees.
The review found that although it may be possible to encourage people in existing regional networks to join national panels, the NIHR needs to think more widely about how it works with underserved communities. Stable, long-term investment in regional public engagement teams is needed to build relationships with these communities.
Read the full report here:
In this project, part of the CLAHRC YH programme, I worked with the Health Economics team to run a ‘World Café’ discussion. World café is a way to bring a lot of people together for a discussion. The large group is split into smaller groups which move around a group of tables. Each table has a question or issue to discuss, with the help of a table host. Every person spends time at each table and at the end of the event the hosts summarise all the discussions and present them to the whole group. This is followed by more discussion.
The Health Economics team had developed a questionnaire (patient reported outcome measure or PROM) that helps people with mental health issues talk about their recovery. At the time of this project the questionnaire was starting to be used in NHS mental health Trusts. This world café brought together over 70 service users and practitioners to talk about setting up a Community of Practice. This is a professional network and support group for people who have similar interests.
Read the paper here: Taylor Buck 2020. Use of a modified World Café process to discuss and set priorities for a community of Practice supporting implementation of ReQoL a new mental health and quality of life Patient Reported Outcome Measure (PROM).
In this evaluation I led an international team of researchers to understand the impact of a ‘train the trainer’ programme that taught people how to teach others using simulation-based learning (SBL). The research team had previously worked with an international industry partner, Laerdal Medical, and developed a competency framework and training programme called the NESTLED Faculty Development Programme, which was being used across Europe.
We looked at the impact on the trainees themselves and within their NHS organisations. We found that the NESTLED Programme works well and is an effective way to train people how to teach using SBL. We also found that when trainees used this approach in their ‘home’ organisations it had a real impact on things like patient safety, by increasing the skills and confidence of frontline staff and by improving the ‘preparedness’ of teams and systems in the NHS.
Read the evaluation report here: Smith 2020. NESTLED Faculty Development Program in Simulation: National Qualitative Evaluation
Read the paper here: https://journals.sfu.ca/jalt/index.php/jalt/article/view/1317/685
For nearly 6 years I was senior programme manager and public involvement lead for a large research programme called CLAHRC YH (Collaboration for Leadership in Applied Health Research and Care). This report summarises the difference that we made through our research projects. The public involvement is on pages 15 – 17.
Richardson 2019. Effective involvement: a report on the evaluation of a research awareness training package for public involvement in health research
In this project I worked with a team from the Universities of Huddersfield and York, to evaluate a training programme for public involvement in research. We used an approach called Participatory Action Research, where some of the people who undertook the training worked with researchers to evaluate it. The public team members were supported by the researchers and carried out most of the data collection and analysis. We worked together as a team to plan the project, discuss the findings and produce a published paper that confirmed the training was useful.
The public team members found the process was a bit overwhelming at the start, but they really enjoyed it and talked about how fulfilling it was. From the researchers’ point of view, having the public members of the team so involved made the results much more genuine.
This project focussed on understanding how a large research programme with lots of partner organisations make decisions about whose research priorities get taken forward.
We found that pre-existing relationships between universities and services were really important but that as time went on having a formal programme itself meant that new spaces could be created for discussion and decision making, including using formal consensus approaches. The way the programme was set up, such as having implementation workstreams and ‘matched’ funding from partner organisations, supported flexibility in the way people worked, and the 5 year lifespan meant that it felt stable enough for people to invest effort. Making decisions in this way meant that individual research projects could be led by the needs of health services, so that they had greater impact. However working in this way took more time than other, more traditional ways of making decisions.
Priority Setting for a Community of Practice
Evaluation of Impact (for Research Excellence Framework Case Study)
Impact and Legacy of NIHR CLAHRC Yorkshire and Humber
Priority Setting for Research
I have found your co-ordination role invaluable. And on a personal level I have found your knowledge, wisdom and continuing support extremely helpful.
Felicity Shenton, Public Involvement Lead, NIHR ARC NENC