Impact of Public Involvement in our Research

The ARC East of England Public Involvement Impact Case Studies are used to evaluate the impact of Public, Community, Involvement, Engagement and Participation (PCIEP) on our research and to highlight the changes, benefits and learning gained from partnership working and public involvement in ARC East of England:

• Increasing Bowel Cancer Screening in Muslim Communities
• Involving care homes, residents and relatives in research
• Involving carers and patients to design and try out a Carer Support Nurse Role
• Involving people who are less socially connected in research 
• Involving mothers with criminal justice system experience in research 

Increasing Bowel Cancer Screening in Muslim Communities

Bowel cancer screening uptake is around 28% lower in people of South Asian ethnicity compared to the general population. Lower rates of screening uptake have also been reported overall among the UK Muslim population. Unequal access to screening can lead to avoidable health inequalities and health outcomes. The British Islamic Medical Association (BIMA) designed a “faith placed” educational intervention which was delivered in selected mosques with the support of local community partners and ARC EoE evaluated the intervention in Luton and Peterborough.

A stakeholder event launched the study which helped to identify potential challenges and ways to overcome them. Peer researchers supporting data collection were recruited from the community to aid data collection and uptake of the screening intervention. As the intervention was delivered in mosques in Luton and Peterborough, its success depended on the engagement of mosque leaders and volunteers from within the Muslim community (including local GPs) who spread the word about the intervention, encouraged people to attend, and hosted the delivery.

Public involvement directed the best way to contact community gatekeepers and how to frame the intervention and its benefits when discussing involvement with mosques. Involvement helped to tailor data collection activities (separate sessions for men and women). Even with public involvement and community support, a great deal of time was needed to successfully collect data. Without public involvement we may have had to abandon data collection in some areas. 

We also heard about how being part of the project impacted the lives of those involved. A participant told us that a few weeks after he attended the session, his wife started to show symptoms. He explained that, thanks to the intervention, he was aware of the potential health issue and so encouraged his wife to go to the doctor. Further testing was needed, and she was diagnosed and treated for another type of cancer. She is now in recovery. 

The benefit of public involvement provided insight and guidance on how best to communicate with communities, and this was invaluable.

Involving care homes, residents and relatives in research

The aim was to keep the aspirations and concerns of residents, relatives and care home providers (managers and staff) about data recording and information sharing at the centre of Developing resources And minimum data set for Care Homes' Adoption (DACHA) study and to ensure that the study was well-informed about the day-to-day realities of care home work and systems to ensure findings are relevant, practical and useful. 

All care homes collect data about their residents as part of routine care. This might include data about resident care needs, like the types of medications they need to take, as well as other important information, such as their likes and dislikes, their quality of life, the number of falls they have had or whether they have had to attend hospital.  However, there is no consistent approach to what data care homes should collect, how data are collected, stored, and used. One way to address these issues is to establish an agreed Minimum Data Set (MDS) – information that all care homes collect and share, in a secure way, across organisations, which was the aim of DACHA Study.

Care home residents, relatives, and care providers, as well as national stakeholders were involved in various ways throughout this project. Due to the Covid-19 pandemic, access to care homes was heavily restricted and the team collaborated with the National Activity Providers’ Association (NAPA) to work with Activity Providers in care homes, who facilitated activities and discussions about research in a way that is meaningful to residents. 

Regular meetings with relatives and care providers took place on Zoom and fed into many aspects of the study, including to help select care-related outcome measures and informing plans for recruiting residents into the study. 

National online consultations with representatives of residents and relatives and care home providers; commissioners, regulators and inspectors of health and social care; together with researchers and family carers were held throughout the project. Topics included data collection, accessing and sharing data in different settings. 

An unexpected outcome was that involving residents created a space where residents could express their thoughts around their own care to the Activity Providers facilitating the sessions. Discussions initially sparked by topics exploring aspects of DACHA Study led getting to know residents better and that residents felt the process was empowering. Activity Providers were keen to respond to resident feedback and action meaningful changes in practice – for example, some residents expressed a wish to be involved in reviewing their care plans with staff, which was later implemented at that particular care home.

Through public involvement, areas came up that the research team had not considered but that were very important to residents and relatives. The Public Involvement Panel were crucial in selecting care-related quality of life outcome measures to be tested in the study.

Involving carers and patients to design and try out a Carer Support Nurse Role

Families and friends play a crucial role supporting people they care for as their unpaid carers. However, they are not always well prepared for this, and it can damage their own health and wellbeing. This can impact their ability to keep ‘caring’. Carers often lack time to look after themselves, putting their own needs last. These needs tend to be hidden until crises. Carers need support to (1) look after their own health and wellbeing and (2) boost their skills and confidence to care. Healthcare policy says this should happen, but healthcare professionals can find this difficult alongside supporting the patient.

To address this, we worked with carers, health and social care professionals, voluntary organisations and national leaders in carer support, to develop a new Carer Support Nurse role. This role was designed to help carers who have their own needs, or who need extra support for their caring role, that cannot be met by their usual healthcare team. The role was also designed to work with other healthcare providers to raise their awareness of carer needs and how to support them.

An extensive number of consultations about the proposed role and the plan for its evaluation took place, with over 70+ East of England stakeholders and groups across health, social care, and the voluntary sector, plus over 100 carers/patients (PPI: Patient & Public Involvement) both before and during the study.

The aim was to ensure that the views of carers and patients were central to the development of the role to help support carers in the community. Their involvement helped to ensure relevance and importance, whether they felt the proposed role could help carers and to co-develop the role with carers, care professionals and commissioners. 

Before the study started, we sought a lot of carer and patient views on the problem and the proposed role. Carer involvement continued to be central throughout the study through our Patient and Public Involvement Group.  They provided advice and guidance on:

• rationale for the Carer Support Nurse role and the pilot project
• likely carer acceptability of the proposed data collection methods from carers
• developing carer-facing recruitment materials
• developing carer-facing data collection materials i.e., a carer survey
• identifying end of pilot questions for the Carer Support Nurse post-holder that would be important to carers
• troubleshooting operational aspects of the Carer Support Nurse role
• troubleshooting operational aspects of the evaluation
• interpretation and sense-checking qualitative data from carers

We were overwhelmed by the positive reaction to the proposed Carer Support Nurse role and study. During the project, Public Contributors (carers and patients), suggested questions to ask the Carer Support Nurse post-holder that produced informative data that the research team otherwise would not have considered, such as ‘which skills did the nurse feel have been priceless?’. The answers to these questions were collated with other data collected and informed the final recommendations from the pilot. 

Involving people who are less socially connected in research 

Social connection is the feeling we get from our relationships with other people. It can take many forms and is made up of lots of different things and feelings. Many argue that the less involved we are with friends, family or our community, the less healthy we are mentally and physically. Though some people prefer to be alone, feeling unhappy in big groups.

Organised groups, such as support groups for substance abuse, walking groups or chess groups, can be used to help people create friendships, help people feel support, share information and increase their confidence, helping people make healthier choices. 

Social connection created within these groups is easy to talk about, yet it can be challenging to measure. This makes it difficult for decision-makers to compare and prioritise which groups should be funded over another. This study explored what feeling socially connected means to people over the age of 50 in the East of England through group discussion. 

In response to Covid-19 and the expectation that the effects of the pandemic were disproportionately impacting people who are less socially connected, we employed creative and flexible methods to work with community groups aiming to work with people experiencing loneliness or poor social connection. We also engaged the public through ARC EoE and in-person events and local libraries. 

Public involvement highlighted the emotive nature of the research topic of loneliness, which reframed how the researchers approached conversations. The involvement of community organisations was integral in working with people who are less socially connected and mapping the funding and decision-making processes locally. 

Involving mothers with criminal justice system experience in research 

This study explores the experiences of women who undergo mandatory separation of their new-born babies in prison. It is the first project to link the professions of social work, health visiting, midwifery and criminal justice staff with the experiences of women who have been in prison, in understanding their care needs and experiences.

Lived experience involvement has been integral from the outset of this project. We worked with the charity Birth Companions and their lived experience team. This team comprised mothers with direct criminal justice system experience, and they assume a central role as co-creators and decision-makers, providing invaluable insights into systemic issues. 

Every part of the study, ranging from the interview schedules and collaborative writing to the design of the project logo, incorporates significant input from the lived experience team. We held regular meetings and workshops with the lived experience team, with an agenda that was collaboratively developed at least three weeks in advance, with topics including ‘non engagement’ with health professionals. We used icebreakers, such as ‘if you were to choose a superpower, what would it be’ to start the sessions and foster a relaxed atmosphere. We also attended a writing retreat as a group too. At the writing retreat the aim was to come together discuss our project aims, to do a podcast together, write (poems and for publications) and create (artwork and podcasts). We also analysed some data together looking for themes in some of the transcripts and did some coding. 

The co-production approach in The Lost Mothers Project is seen as a way to create more understanding, and equality when undertaking research. The published article stresses that co-production is not just a trendy idea but a crucial part of making positive changes in how we understand and address issues in the criminal justice system. The lived experience team's active role, both in shaping the research and making decisions, shows the real impact of always including the viewpoints of people who have personally been through the prison system.