Learn about our collaborative approach working with the public to shape our research and ensure its meaningful impact on our local communities.
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
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.
Cultural factors also played a role as seeking medical advice was often associated with being unwell and preventive measures were not widely understood.
Dr Choudhry, a Peterborough-based GP, involved in the study.
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.
It’s been a real privilege to be part of this group, learning together as we have worked through the different asks of the study, reflecting on the different perspectives from the panel and feeling that all views have been respectfully heard and responded to.
Liz Jones - Public Contributor and Co-Investigator
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.
"Being involved with the project helped me focus on my own health. Every year gets harder and impacts on your physical and mental health. The biggest worry for a Carer is becoming unwell themselves and in my case has caused me to suffer from anxiety [...] Would love to have access to a Carer Support Nurse in my area."
Les Redfern - Carer and Public Contributor