Inclusion Panel Our Inclusion Panel is helping us improve the way we plan, deliver and support research.

Colleagues from the Health Foundation’s REAL Centre are setting up two new research units that will carry out research on how decisions are made within health and social care settings. The units will support policy and decision makers.

The team asked the panel for their thoughts on:

• the importance of informed decisions about health and social care
• how the public could be more involved in improving the ways in which health and social care decisions are made
• what researchers need to consider when they plan to gather data from patient groups, people who seek or receive social care, and individual members of the public.

Colleagues from the Health Foundation’s strategy team consulted the panel on the 2022 strategy refresh. The team asked the panel how they could involve a wide range of people, create a shared foundation for engagement and involvement for now and the future, and provide senior management with recommended activities to carry out from 2023 to 2025. The team received a lot of suggestions and feedback from the panel. The strategic plan will be presented to the Health Foundation’s Board of Governors in the second half of 2022 and the team will share the strategy with the panel once signed off by the board. 

With funding from our COVID-19 Research Programme, a team from the University of Glasgow is using microsimulation models to explore the impacts of income and welfare policy responses to COVID-19 on inequalities in mental health. They explained how creating what-if scenarios based on computer simulations work and what they were using them for. They asked the panel which tax and welfare policies they deemed best to support people’s mental health, how the team should share what they find out and what concerns the panel had about using computer simulation to do the research.  

Daniel Kopasker, part of the team at the University of Glasgow, said:  

‘Please pass on our sincere thanks to the panel members for their lively participation. It was evident that there were concerns about gaps in our data. When reporting our results, we will ensure that we discuss the implications of these gaps. We realised that we must also do more to highlight the strengths of our data. The suggestion to use infographics to present numerical results was useful, and it was clear that we should supplement numerical results with short examples of people’s experiences of the benefits system.’ 

The panel shared their thoughts on the past year and future recruitment to the panel – especially how we make our recruitment processes more inclusive. The panel also discussed ideas for a future showcase event to share what we have all learnt from being part of this initiative. The panel then switched to festive mode and had some fun playing games. It was a lovely end to an intense year.  

Colleagues from the Health Foundation’s research team consulted the panel on their new strategy to improve inclusion. They wanted to ask the panel for help with developing the strategy, particularly looking at how to fund, plan and share research in more inclusive ways. The panel gave the team food for thought with regards to potential process and organisational changes.  

The team will share the finalised strategy with the panel in Summer 2022. The team may ask to revisit the panel to consult on how to carry out specific areas of work suggested

Colleagues from the communications team consulted the panel on updating our house style guide, Write right. They were especially interested in hearing the panel’s thoughts on how we should write about disability, race and ethnicity, gender and sexual orientation, and poverty and inequalities.

Following a break for the summer holidays, members joined us in September to discuss their ideas for an event showcasing the Inclusion Panel’s story. A subgroup of the panel is now working with the Foundation and Furner Communications to plan the event. We expect it to happen in early 2022.

Colleagues from the Health Foundation's REAL Centre consulted the panel on plans for their upcoming REAL Centre Insights report.

The panel’s suggestions were really wide-ranging but unfortunately not all of the panel’s suggestions could be followed up. Part of this was driven by the data. For example, one suggestion was for more detailed analysis for specific demographic groups. The team were unable to do this analysis as the datasets did not always capture this level of detail. In other cases, the sample sizes would have been too small to analyse.

Claudia Barclay, part of the REAL Centre team, said:

'Two key things stick out for me. Firstly, the panel highlighted the importance of providing different ways for people to digest the report (for example, shorter explanations and visual options such as presentations or videos). We have spoken with our communications team and are planning to provide a presentation and potentially an infographic alongside the main report to give more options for the reader. Secondly, the panel also recommended we listen to stories from those using social care to consider the human aspect of the work. We have arranged follow-up sessions with some panel members to hear their stories and hopefully incorporate this thinking into the report.'

With funding from our COVID-19 Research Programme, a team at Newcastle University is trying to uncover how and why some communities have been affected more than others by COVID-19. They explored these questions with the panel.

The panel provided fresh ideas on factors that may affect geographical inequalities in COVID-19 that the research team (drawing on established literature) had not thought of. They are now using the new factors where there are data available to measure them.

The team is currently preparing a paper on how inequalities in COVID-19 (deaths and cases) have evolved and another – which draws most on the panel’s input – exploring which factors have impacted these inequalities.

Clare Bambra, part of the team at Newcastle University, said:

'The Inclusion Panel was extremely well run and thought-provoking with fantastic ideas for our research project. It also offered more fundamental challenges and insights into how we should communicate our science – to all parts of the public.'

A team from the Academy of Medical Sciences (AMS) asked the panel about the public engagement aspects of their review of the key challenges likely to put pressure on the health and social care system over winter 2021/22.

The discussions with the Inclusion Panel helped shape the team’s public engagement workshops. AMS also shared the panel’s insights with their Expert Group, which in turn influenced the group’s input.

AMS published their analysis in July, acknowledging the Inclusion Panel’s contributions in the paper that was presented to the government’s Scientific Advisory Group for Emergencies (SAGE). The report was then cited in the UK Government’s Autumn and Winter Plan.

In 2020 we supported two studies as part of the Welfare at a Social Distance project. Researchers from the project asked the panel about the fairness of Universal Credit and the pros and cons of making part of the benefits system work like furlough did.

Ben Baumberg Geiger, part of the project team at the University of Kent, said:

'We learnt a lot about the problems people had had with the benefits system. This was partly about the problems of dealing with a digital system, which was particularly valuable as we hadn’t been able to cover this much in our research. And we got a really strong sense of the issues of power, which I think is a really important thing that the panel can tell us about. In the short-term, it shaped our discussions with people about benefits non-take-up and what to do about it. After our report we had lots of chats with people about this, including with DWP. And perhaps the most powerful impacts are in the longer-term: I am trying to set up a new project to look at issues of power in the benefits system, and how this is different in different countries.'

The panel shared some of their own ideas for research that the Foundation should pursue – research on the health inequalities experienced by people with learning disabilities and trans people.

Staff who attended this meeting said it was really valuable and gave them a lot to think about for their future work.

Researchers from the University of Sussex came to the February meeting to ask the panel about their thoughts on ethnic inequalities in health care use, quality and satisfaction among people with multiple long-term health problems.

The research team and Ipsos MORI presented plans for the Long-term Research Agenda: a programme exploring how research can contribute to the UK’s future resilience and preparedness for health shocks in the wake of COVID-19.

Engaging with the Inclusion Panel helped the team realise that they need to fundamentally reshape their projects plans and research design (protocol). For example, Ipsos MORI introduced five mini-workshops with members from the Inclusion Panel, as well as young people, older people, people from minority ethnic groups and disabled people, to consider the wider determinants of health and the impact of COVID-19. 

The mini-workshops enabled panel members and others to share their lived experiences first hand. This allowed the team to better understand how they had been affected by COVID-19, and to think about what support people might need in the future.

The Health Foundation's REAL Centre presented their plans to explore inequalities in health outcomes during the COVID-19 pandemic.

The Inclusion Panel shared their experiences of the pandemic and their suggestions for differences in health outcomes for different groups. They highlighted several issues including the assumptions that researchers and others make about people’s lives and experiences because they are part of certain communities.