DR REUBEN LARBI, RESEARCH FELLOW – BLACKPOOL HEALTH DETERMINANT RESEARCH COLLABORATION (HDRC)

Background

This work closely aligns with the mission of ARC NWC, which aims to reduce health inequalities through collaborative, community-engaged research across the North West Coast.

By involving community co-researchers and focusing on the wider determinants of health, Blackpool HDRC reflects ARC NWC’s commitment to ensuring research is shaped by those most affected and translated into meaningful local change.

Health inequalities are avoidable, unfair and systematic differences in health between different groups of people and communities. They are<a href="https://www.kingsfund.org.uk/insight-and-analysis/long-reads/how-can-we-tackle-health-inequalities rooted within our society and are getting worse. These differences are avoidable because they do not just happen by chance. Rather, they regularly affect certain groups of people due to circumstances beyond their control, and tends to put them at a disadvantage which eventually reduces their opportunities for longer and healthier lives.

Improving health inequalities is major priority for Blackpool Council. One way of measuring health inequalities is looking at life expectancy. Unfortunately, population data shows that Blackpool residents live shorter lives when compared to national data. That is, on average, both male and female residents expect to live shorter years than people who live in other parts of England, and of the shorter life, a higher proportion is lived in poor health and disability than is seen nationally. The 2024 Public health report for Blackpool indicates that overall, male residents live 28% of their lives in poor health while females spend a third of their lives (31%) in poor health. Probably, a more pressing point is that the number of years lived in good health (known as the healthy life expectancy) has been decreasing in Blackpool, particularly for females. This shows that there are high levels and early onset of long-term health problems, like mental health issues, breathing problems, heart problems, and muscle or joint problems.

This situation of poor health is linked with the conditions under which people in Blackpool live, grow, and work such as their housing conditions, employment and job insecurity, income, and education. In fact, almost every aspect of our lives from our jobs to our homes, our access to education and public transport, to whether we experience poverty or racism impacts on our health and ultimately how long we live. These factors are often referred to as the wider determinants of health. An important step to reduce health inequalities is to fix these root causes.

Local authorities are well placed to influence and improve these root causes and it is this recognition that prompted the National Institute for Health and Care Research (NIHR) to invest in a five year funding infrastructure called the Health Determinants Research Collaboration (HDRC) to help provide capacity for thirty local authorities including Blackpool to become more research active and make evidence informed decisions to address these unacceptable health inequalities. Blackpool HDRC is locally known under the tag line “Blackpool Researching Together” (BRT) to reflect our research approach that is based on involving people with knowledge by lived experience, scientific knowledge, and strategic or practice-based knowledge. We believe that instead of conducting research on communities, we can conduct research in and with communities. In this approach, community members work as equal partners with academics and practitioners to generate evidence about the conditions that affect the health of people in our community. Thus, some community members are co-researchers on the project.

We believe that when communities take an active role in research, it helps us do research that truly addresses our needs and can be put into practice locally. This idea comes from current studies that show how the inclusion of voices that are often overlooked and working with community members can improve the research process and effects [1-2]. According to Kulmala et al. [3], co-research is a method where people who are affected by the research are involved as active participants and experts throughout the process. Co-research comes with its own set of challenges. These include handling differences in power, navigating varying research priorities and cultures between organisations, allowing flexibility to enhance participation, creating balanced and equal partnerships, and ensuring that all perspectives and skills are taken into account. We are aware of these challenges and do our best to handle them effectively.

BRT has commissioned two local organisations, Healthwatch Blackpool and Boingboing Foundation, to respectively employ ten adult and ten youth co-researchers. Our community co-researchers (CCRs) help with research alongside BRT staff, university partners, and council officers. Their jobs include contributing to the design of research projects, doing interviews, leading workshops, organising community events, and presenting research results at conferences and local events. Besides making the research more meaningful, this approach also helps CCRs build skills so they can contribute more to research in Blackpool and gain useful skills that can support with employment and so much more.

Reflections from CCRs about their involvement in research

After more than a year of using our co-research approach, our CCRs have looked back on their own experiences and the group’s experiences to see what worked well and what could be better. This mostly relates to their work in two research projects: the Cosy Homes in Lancashire (CHiL) evaluation and the supported housing improvement programme. Housing problems are a major cause of health inequality. The CHiL initiative addresses energy efficiency and fuel poverty that affect the physical and mental health of our communities, which ultimately affects the opportunity to live longer and healthier life. In response to this risk, government in partnership with the 14 Local Authorities in Lancashire, is offering residents access to energy efficiency grants, affordable heating solutions, energy advice and support on a range of energy saving measures, to help improve heating and insulation of home homes. BRT in partnership with the NIHR PHIRST Team is researching the levels and barriers to uptake of the grant.

Supported housing provides accommodation with additional support for residents who need help due to health issues and risk of homelessness. The aim is to help residents to move on to more independent living. BRT liaised with the Blackpool Council housing team to assess the experiences of residents and staff about the service. For both projects CCRs, alongside BRT staff, co-produced a guide for questions that participants of the research were asked, conducted interviews, and contributed the analysis of supported housing interview data.

The reflections are based on a group discussion that involved three CCRs and written reflections from two others who could not participate in the discussion.

What went well

The key themes on what went well are shown in Figure 1

Figure 1: BRT CCRs experiences of what went well in the co-research process

In the co-research process, CCRs felt comfortable and confident to express their views without the fear of feeling foolish. This was elaborated as:
“I don’t think anybody in the group has had to hold back. Yes, so that has been good for me. I have felt confident to say things without feeling like being silly…you know, without being put down. We have been made to feel like equal, co-researching together” (Participant of CCR group discussion).

In terms of communication, a CCR described the “notable absence of jargon”, and this enhanced effective participation.
CCRs with specific needs felt they have received extra support to enhance participation. This included flexibility with meeting times, a balance between online and in-person meetings, and tailored additional support.

The flexibility with meeting times was explained in a group discussion as:
“I like the way people have been consulted over meeting times to maximise engagement. I think that has been fab! And the patience; I understand there are always time limitations with projects, but the patience that everyone shows and particularly allowing co-researchers to be like, you know what? I can’t make it this week, let’s make it next week. And even though it might obstruct the deadline, it’s said, okay we will wait for you because your contribution is valuable” (Participant of CCR group discussion).
A CCR described the tailored support received as:
“For me, when it comes to the SHIP project, for me, I think the way I was able to stick with,.. say XXX (name withheld) for the whole thing,.. because she had previously asked me about me not being able to read fully. We decided that it would be good if I stuck with her fully for the extra support. Having said that, I really enjoyed the interview process because that was something completely out of my comfort zone, and something I would normally not want to do. Something that I would push myself way from. Anything negative, I don’t have anything negative to say about it” (Participant of CCR group discussion).

The skills and development opportunities associated with the co-research role has enhanced the confidence of CCRs to pursue life changing ambitions. For instance, a CCR narrated the impact of the co-researcher role on their confidence and personal aspirations as:

“Before this I was a stay-at-home parent, who lacked any confidence or self-belief. Being part of the team opened an entire new world for not only me, but for my family as well. I received an initial six-week training program and then further training on research methods. As it was alien to me, I felt eager to learn more, being part of a team with much expertise was a real advantage for me. My passion is supporting disadvantaged communities such as the one I reside in. It is where my children live and go to school, I want to create a safer environment where all children can feel safe and create better Community spirit. I decided to go to college and complete my level 3 Social Care/ Pastoral services, I then completed my functional skills Math’s and English, and now I am approaching the end of my first year of university. I then had the confidence to start and facilitate a community group” (Reflective piece of a CCR).

BRT offers tailored training, like research methods, and gives CCRs the chance to use what they’ve learned by taking part in relevant projects. This approach has helped CCRs gain skills needed for the job market. Since the project began, several CCRs have moved on to different career roles. The experience was narrated by a CCR who has since moved on to a new role as:
“The co-research position provided me with confidence and knowledge on health inequalities and I felt I had enough knowledge to bridge a small gap. I have been successful in gaining a new role with Healthwatch as a Community Engagement Officer within Claremont, I felt after working the group for almost twelve months I had built up some amazing connections, but more to the point I felt there is vital work that needs to be undertaken, by someone who understands the diverse Community” (Reflective piece of a CCR

What could be improved

Some CCRs had a sense of divide between them and the “core BRT” team. This feeling was in terms of geographical working place and information access. This was due to the adult and youth CCRs being employed by different organisations and often worked at an office different from other BRT staff. A current communal working place for all members of the BRT is expected to address this concern.

Figure 2: BRT CCRs experiences of what could be improved in the co-research process
Though overall everyone feels confident to share their ideas, a participant of the reflective session recommended that a box could be provided for people to write and drop their ideas if they feel uncomfortable speaking up.

There seemed to be consensus in co-production practice that not all stages of research could be co-produced. A CCR reflected on the problem with this notion when he felt the scope of the CHiL evaluation could be expanded if the writing of the bid was co-produced. This was expressed as:
“Firstly, it was raised about us not being involved from the inception of the projects. The conversations around the bid made me realise that it was limited in scope, and so when good ideas came through, they were rejected” (Reflective piece of a CCR).

Finally, a CCR suggested that researchers from outside organisations collaborating on projects should integrate more closely with the BRT team. This suggestion arose from a situation where a person listed as a “co-investigator” on a project was never seen or met by the CCRs throughout the project’s duration.

Conclusion

It is widely acknowledged that involving individuals who are directly affected by the research, even if they are not researchers, can improve the quality of the research and contribute to positive change in society. We believe our approach has taken a step further than this, by employing people who face health inequalities as co-researchers to work as equals across the BRT team. Addressing health inequalities for both individual people and for the system as a whole. The reflections indicate that CCRs:
• Feel supported by the BRT research team, and their peers
• Deliberate effort have been made to ensure participation
• People have felt valued, which has enhanced their confidence to contribute
• Information has been communicated in a way that everyone understands
• The co-researcher role has a positive impact on individual’s wellbeing.
• Skills and capacity development aspect of the programme has helped some CCRs to move on to other roles

On the other hand, CCRs suggest:
• As much as possible, CCRs should be involved in projects from the outset to enable them to contribute to the scope of the research
• The entire BRT team including the full-time staff and CCRs should be treated as one group. A sense of divide was observed in part, from the different working locations of CCRs and other staff of BRT. The current arrangement of working at the same office is expected to address this concern.
• Having a way to communicate if CCRs don’t feel comfortable to talk in meetings. For example by providing a box for written contributions
• Researchers from outside organisations collaborating on projects should integrate more closely with the BRT team.

These reflections and recommendations align with BRT’s core principles of co-production. We are looking forward to inclusive research activities that contribute to the overall health and wellbeing goal of “Together we can make Blackpool a place where ALL people can live long, happy and healthy lives”.

References

1. Dembele, L., Nathan, S., Carter, A., Costello, J., Hodgins, M., Singh, R., … & Cullen, P. (2024). Researching With Lived Experience: A Shared Critical Reflection Between Co-Researchers. International Journal of Qualitative Methods, 23, 16094069241257945.
2. Dewa, L. H., Lawrence‐Jones, A., Crandell, C., Jaques, J., Pickles, K., Lavelle, M., … & Aylin, P. (2021). Reflections, impact and recommendations of a co‐produced qualitative study with young people who have experience of mental health difficulties. Health Expectations, 24, 134-146.
3. Kulmala, M., Venäläinen, S., Hietala, O., Nikula, K., & Koskivirta, I. (2024). Lived experience as the basis of collaborative knowing. Inclusivity and resistance to stigma in co-research. International Journal of Qualitative Methods, 23, 16094069241236271.

Acknowledgment

A big thanks to all our community co-researchers for their hard work and dedication to the activities of various projects, and particularly for contributing to the reflections for this blog post. Also, many thanks to Natalie Holt, our Community Co-research Officer and Cy Karoonian (Project Co-ordinator at BBF) for coordinating the sessions.