Research Ready Communities: Blackburn with Darwen Community Engagement Project Findings

Contents

Project Goals and Background

The NIHR CRN Research Ready Communities project is a comprehensive community engagement programme strategically designed to prepare underserved communities for active involvement in research. It encompasses a variety of strategies aimed at enhancing community understanding, fostering reciprocal relationships with communities and partner organisations, and ultimately facilitating the seamless integration of communities into the broader landscape of health and social care research. The program operates as a pioneering framework, providing communities with the necessary tools and knowledge to meaningfully contribute to and participate in the various stages of research, thereby promoting the generation of more inclusive and impactful outcomes.

This 12-month project is centred on engaging with the diverse population of Blackburn, exceeding 150,000, with a particular focus on three target populations: ethnic minority groups, vulnerable adults, and people living with disabilities. Insights from Census 2021 and official statistics reveal Blackburn's unique demographic landscape, a high proportion of people classified as vulnerable adults and multicultural composition. The area hosts various ethnicities, with 35.7% identifying within the "Asian" category, ranking third highestin the UK. The religious diversity is also significant, with 35.0% identifying as Muslim. Notably, 19.3% of the area is registered as disabled, compared to the national average of 17.3%. Despite being categorised among the top 10% most deprived areas in England based on the English Indices of Deprivation (2019), the project recognises variations, including less deprived rural communities. The strategic choice of Blackburn as the project's focal point underscores our commitment to addressing the unique health and social care needs of ethnic minority groups, vulnerable adults, and individuals living with disabilities in this dynamic and diverse community.

Project team

The project was undertaken by two musculoskeletal physiotherapists employed within NHS integrated musculoskeletal pain and Rheumatology service, with collaboration from East Lancashire Hospital Trust and in partnership with the local council's Wellbeing service.

The team also consisted of two community engagement team members from the patient and public involvement and engagement team within the Greater Manchester CRN (CRN GM) workforce team in order to deliver practical skills training with the community champions, build relationships with community organisations, and support the community champions to undertake interviews and surveys.

Overall, the team's experience in running this project is based on their expertise in physiotherapy and research, as well as their understanding of the needs of the underserved population they work with. They have access to resources and support from the GM CRN workforce team, and plan to work closely with community champions to ensure that their research is relevant and meaningful to the local community.

Project framework

The project will utilise the Research Ready Communities planned programme of activities, devised by the National Institute of Health & Care Research (NIHR) Clinical Research Network (CRN).

The resulting Blackburn with Darwen Health & Care Research Community Engagement Team worked in collaboration with the NIHR Clinical Research Network Greater Manchester (CRN GM) team to follow the RRC programme:

• Identify community research champions to work with the project staff across areas of Blackburn
• Carry out a mapping exercise to gather a picture of key people, groups, services and places where the above communities, in some of Blackburn’s deprived neighbourhoods (Mill Hill, Bangor Street and Audley area), can find out about research and get involved.
• Carry out listening exercises with ethnic minority groups, vulnerable adults and people living with disabilities, on a one-to-one basis, or group sessions, to understand their views on Health and care research as well as NHS services- particularly physiotherapy.

Community Champion Training

Once the project team had identified Community Champions, the team and volunteers undertook a 2-day training programme to find out more about how the programme would unfold.
Day 1 is a workshop to support understanding more about health & social care research and its importance. It includes information about initiatives where interested members of the public can register their interest in getting involved in research, in many ways. Inclusion in research was an important feature on the agenda as the groups chosen for this project are amongst underserved groups in Blackburn.
Day 2 was completely focused on the role of Community Champions; the need to map the locality and how to carry out the one-to-one or group conversations.

Community Mapping Exercise

A community mapping exercise was carried out before and after the listening exercises to identify sources of strength & activity in the community that could support access to information about research.
Key questions asked were:

• Where do Ethnic minority groups, vulnerable adults and people with disability already go to socialise, or to get information?
• What groups for ethnic minorities, people living with disabilities or vulnerable adults already exist and bring people together? 

Understanding this information better helped the project team and volunteers co-design the delivery of this project in a way that complemented and built upon people’s existing connections and interests within the community.

Listening Exercises

Community Champions carried out several conversations with target communities throughout December to March 2023/2024. They decided how best to carry out conversations, reflecting the needs, availability, and interests of their groups.
The project team also participated in organising a research festival and a community event held at Blackburn Library to try to engage with people in the wider community, while also arranging listening exercises at community centres, local council engagement events and several charity and support groups.

Evaluation / Next Steps

In February 2024, the Community Engagement team and CRN-GM colleagues spent a day together, identifying the main themes to come out of the engagement process.
All the information gathered through the Blackburn community mapping exercise and listening exercises, was reviewed to search for themes in what people knew or felt about health and research and their potential preferences for finding out about research.

What did the Blackburn with Darwen Community Engagement Project find out?

Summary of the Mapping Exercise

Several locations, people, and organisations were pinpointed as sources of strength and engagement throughout Blackburn, specifically in Mill Hill, Bangor Street, and Audley areas. These resources could serve as conduits for disseminating information about research. This exercise was carried out twice. Initially, it aided researchers and their volunteers in co-designing the project's delivery in a manner that complemented the existing community connections and interests.

The second iteration, in collaboration with CRN GM, aimed to identify potential partners, places, people, and organisations for future collaboration, to enable target populations to learn about research opportunities and, when feasible, participate in a manner suitable to them. Some of the organisations identified will participate in the upcoming March feedback event, while others represent future connections.

Discussions this time included exploring digital channels and utilising local media or newspapers to disseminate information regarding health and care research, to ensure sustained momentum.

In both instances, it became apparent that Blackburn offers a rich network of connections for its residents. With numerous services, people, and activities available for community engagement, the potential for fostering research connections exists, awaiting relevant services to recognize the opportunity for collaboration with this community.

Summary of the Listening Exercise

In total around 200 people from ethnic minority groups, vulnerable adults and people living with disabilities were involved in the project. Some took part in group activities and some in a 1:1 conversation, whilst others only took part in an online survey.

• 55 one-to-one conversations and questionnaires completed
• 36 people took part in group conversations
• 109 took part in an online survey. 

As part of our engagement activities, we organised a research festival with the Clinical Research Network- Greater Manchester, held at the Blackburn Library in the town centre. This festival aimed to showcase the diverse range of research opportunities available in the local area for community participation. Additionally, it provided comprehensive information about various local NHS services and offered health checks to facilitate early disease detection and prevention. The event garnered participation from various engagement and research teams, engaging directly with community members. Furthermore, our community engagement champions conducted interviews throughout the festival to foster meaningful interactions and collect valuable feedback.

The festival was widely publicised through multiple channels, including radio broadcasts, digital platforms, and community champion networks. Additionally, promotional efforts were bolstered through collaboration with our partner organisation and the Blackburn with Darwen Council, ensuring broad outreach and participation from the local community.

Blackburn With Darwen Community Engagement Team Observations and Key Themes

Observations

Healthcare Research

There is a widespread lack of understanding among participants regarding healthcare research. Many individuals were unfamiliar with the term and its potential benefits. There was a prevailing misconception that participating in research would be time-consuming and risky, with the primary incentive being financially compensated. However, those who were aware of healthcare research expressed willingness to participate, particularly if it involved topics of personal significance and had the potential to benefit others. Nevertheless, approximately 80% of participants interviewed and surveyed, both individually and in groups or online, were unaware of the research opportunities available in the area. This indicates a significant gap in awareness and understanding regarding the scope and potential impact of health research within the community.

Physiotherapy

The primary observations regarding physiotherapy revealed a lack of consensus among participants in defining what physiotherapy means. Personal experiences or the absence thereof significantly influenced individuals' understanding of physiotherapy. While a majority of responses from community conversations were positive and associated physiotherapy with the diagnosis and treatment of pain or injuries, there was a prevalent perception that physiotherapists primarily engaged in providing verbal advice or guidance on lifestyle changes, issued exercise sheets without incorporating hands-on treatment. This highlights a discrepancy between perceived and actual practices within physiotherapy among community members.

Key themes

Healthcare Research

Lack of understanding and Misconceptions

• The language used to describe healthcare research is not meaningful to people. Many felt the language used is not simple enough, making it difficult to understand.
• Language barriers, especially for ethnic minorities, further complicate understanding.
• Translation of materials into other languages does not guarantee comprehension; for instance, Gujarati when written can be challenging to understand, akin to reading Shakespeare in English where one may read the words but struggle to grasp their meaning. The same is true for some Arabic speakers.
• There is a perception that research is detached or occurs elsewhere. The majority of people (around 80%) did not know about what is available locally or that it was possible to take part in research.
• Misconceptions include the belief that research is time-consuming.
• Concerns about privacy and trust arise, with fears of personal information being misused.
• There's a misconception that research participation may involve high-risk treatments or being treated as a "guinea pig."

Research Focus for the Future

• There was a wide range of answers about what research priorities should be for the future.
• Health education was a big focus as people saw this as a way to prevent illness or improve health conditions in general.
• A focus on Ethnic minorities to ensure inclusion in future projects due to different prevalence and treatment of different conditions, and also to account for cultural differences where it is relevant.
• New treatments, ways of preventing disease and improving the quality of services provided.
• Mental health research to explore loneliness, social isolation and to address the stigma surrounding mental health access especially in ethnic minority groups.

Places to access information

As mentioned, most people are willing to take part in research, but most do not know how to get started or where they can go to get information. We asked people to identify where they would prefer to receive this information.

• Most people preferred face-to-face ways of receiving information about research, like community centres, GP surgeries or shops.
• Some people preferred online access or social media, especially for people who are housebound or those who don’t leave the house often like mothers with newborns or people with mental health conditions. Another way that was identified with ethnic minorities is mosque radios due to its wide outreach and levels of trust in the community.

Physiotherapy

Community views on Physiotherapy

• Perception of physiotherapy sessions primarily involving advice and exercise sheets or recommendations without hands-on treatment.
• Financial constraints and lengthy recovery periods impact accessibility and perceived effectiveness of physiotherapy.
• Patients preferred a self-referral system rather than accessing through GP referral and felt this might make it easier to obtain more timely appointments.
• Lack of hands-on treatments.
• Concerns regarding the insufficient number of physiotherapy sessions provided to achieve sustained improvement or recovery.

Community views on how to Improve Physiotherapy

• Appointments closer to home. Patients felt it would be easier to engage with physiotherapy if sessions were held in community centres where people can get timely advice about how to manage their conditions and participate in exercises.
• Group sessions and shared recovery sessions, to get reassurance from others in different places in their recovery journey and to ensure long-term engagement with exercise through group motivation.
• More hands-on treatment and going through exercises.
• Self-referral system to get timely advice and appointments.

Next Steps for Blackburn Community Engagement

From this point, the group developed an action plan that focused on sharing what was discovered. A community feedback session is being held in March 2024 at Audley Community Centre to include those who wished to stay connected to the project; members of the public and key stakeholders in these communities such as local health and care professionals, local authority employees with responsibility for communities/care/public health.

Some key stakeholders are related to place rather than service. For example, well-respected and connected people in the community that could support spreading the work about research could attend.

The Community engagement team has come up with the next steps for Blackburn and its key stakeholders, which could ensure the continuation of engagement in underserved Blackburn communities and serve research teams well, as guidance for working within the local Blackburn area.

1. Expanding the Community Engagement Team

a. Form a Research Committee or Ongoing PPIE (Patient and Public Involvement and Engagement) Group: Establish a dedicated team to oversee community engagement efforts, ensuring diverse perspectives are represented.
b. Include Wider Organisational Links: Forge connections with a broader range of organisations to garner support and resources for community engagement initiatives.

2. Create a Community Champion Framework

a. Define Roles and Responsibilities: Clearly outline the roles and responsibilities of community champions, specifying their tasks and contributions.
b. Develop a Contract for Working: Establish formal agreements outlining expectations, commitments, and support for community champions.
c. Agree on Ways of Working: Establish standardised practices and protocols to ensure consistency and effectiveness in community engagement efforts.

3. Research Made Simple

a. Simplify Language on Circulated Materials: Ensure research-related materials are written in clear, accessible language to enhance understanding among community members.
b. Translate Materials into Different Languages: Provide translations of research materials to accommodate diverse language preferences within the community.

c. Promote Research through Alternative Channels: Utilise digital platforms and various forms of media to disseminate information about available research opportunities, catering to individuals who may not prefer reading traditional materials.

4. Research Made Together

a. Co-Production Sessions in Key Locations: Host collaborative sessions within the community to involve residents in the research process, fostering co-production and mutual decision-making.
b. Embed NHS Services in the Community: Integrate National Health Service (NHS) services more deeply into the community by establishing accessible points of contact and engagement, enhancing the community's connection with healthcare resources.

By implementing these strategic steps, we aim to enhance community engagement in research initiatives, fostering collaboration, understanding, and participation among diverse community members.

Acknowledgements

We are enormously grateful to:

• Our Community Champions who are at the heart of this project, Charlotte Kershaw, Amina Imam and Layla Fletcher.
• The Wellbeing Service in Blackburn with Darwen for their support throughout the project.
• And we are also grateful to CRN Greater Manchester for their support with the project with special thanks to Mary Speake and Ben Bayman.