July 2024

Promoting Inclusivity in Sussex's Health & Care Research: Community Research Final Paper Published

The first phase of the pan-Sussex Diversity in Research Engagement Network (REN) successfully concluded in April. It was supported by a £100,000 NHS England grant. Launched in October 2023, the project aimed to establish a regional network of diverse community researchers, building capacity through development training and qualitative interviewing experience.

In collaboration with Voluntary, Community, and Social Enterprise (VCSE) partners, the project recruited fifteen community researchers with lived experience within the LGBTQ+, Transgender, Non-binary, Intersex (TNBI), and racially minoritised/global majority communities. Community researchers engaged individuals from minoritised groups in deprived areas of Sussex to understand how to better support their participation in health and care services and research. Over forty interviews were conducted, with many participants noting it was their first time being invited to partake in research. These interviews provided valuable insights on how to improve inclusivity in local research.

A key finding from community researchers is the need for research teams to consider how negative experiences and perceptions of marginalisation by mainstream society impact engagement in health and care research. Further research with TNBI communities is essential to address their unique challenges with the NHS, which affects their participation in research. Additionally, incorporating translation and interpretation support into all health and care research activities is crucial to provide equitable opportunities for people for whom English is not a first language to participate in local studies.

Community researchers also recommend that research teams adopt co-creative approaches, partnering with VCSEs and communities early in the research planning process. This collaborative method is seen as essential for making stepwise changes in how local health and care research is organised and conducted.

This project underscores the importance of inclusive practices in health and care research, ensuring that all community voices are heard and represented. The final paper offers a comprehensive overview for achieving more impactful engagement in health and care research in Sussex and beyond. With greater impact, we can begin to address the health inequalities that affect our communities.

Read the project report here >

May 2024

INSIGHT Award offers Masters Opportunities to Allied Healthcare and Local Authority Professionals

In April 2024 the Universities of Brighton, Chichester and Kent were successful in receiving an NIHR INSIGHT Award of £2.6million.  The award is funded by the NIHR, and its mission is to inspire students into research.

The three Universities have now announced the NIHR INSIGHT Programme for South East Masters’ Scholarships, which will offer local authority, social care or midwives, nurses, and allied healthcare professionals the opportunity to study for an MRes/MSc in research.

There are courses available at the three Universities that offer a semi-structured entry into research and the chance to undertake an independent research project rooted in professional practice.

These courses are fully funded and available with an independent stipend.

Click the documents below, or email Dr Nina Stewart for more information. n.stewart1@brighton.ac.uk.

Click here to INSIGHT flyer >

Click here to INSIGHT FAQs >

May 2024

Since we jointly launched the Pan-Sussex Diversity in Health and Care Research Engagement Network (REN) late last year, 15 people from LGBTQ+, Trans, Non-Binary & Intersex and Minoritised Ethnic groups have received community researcher development training, and conducted a total of 42 community interviews.  They focused on:

• Experiences and perceptions of the NHS
• Accessing health and care information
• Awareness and understanding of NHS Health and Social Care Research
• Views on participation in research

On Tuesday 23^rd April 2024, we brought the community researchers together with the Trust for Developing Communities (training programme lead), and other community organisations in Sussex for a Celebration Event, to highlight their experiences and achievements.*

Jane Lodge, Deputy Director of Working with People and Communities NHS Sussex, opened the event. She outlined the lack of recruitment to studies for our marginalised communities, and also the lack of studies specifically looking at their unique experiences of the healthcare system.

The community researchers who spoke explained what they learned from their experiences, both about themselves and their communities. They also talked about how their own experiences in healthcare were echoed by those they interviewed.  Some community members said they had not engaged in research before because they had never been asked. Many described compounded barriers to participation and said they felt marginalised and discriminated against by the NHS in general.  Trust was a key issue.

“People in my community are saying.. what’s this research gonna be used for, what agendas do people higher up have, even if the people we’re talking to might have a positive agenda?”

“The stories I’ve heard from my participants have been really difficult, as all have experienced so much in their lives from their treatment from the NHS… [it’s hard for them]..To try to be positive towards the NHS that has lost years of their lives, and nearly their lives, and also the chances of better health and respect and treatment.”

But they also described narratives of resilience, learning, and overcoming significant challenges.

“I was really grateful to hear that the next phase of this project would include the co-development of future bids with the community researchers.  I think that’s really, really important, that the community researchers are involved from the inception of the project and I think I would love to see further opportunities for our community researchers to get involved”.

Partnering community organisations formed a discussion panel and we heard about what the REN meant to them and what they wanted to see next. There was agreement that more space and resources for co-production was needed and we need to do more research on intersectionality.

Attendees got into small groups and brainstormed ideas on how to take forward community research. Participants highlighted the importance of:

• ensuring early involvement of marginalised communities in the creation of research bids to ensure their voices are heard
• looking to communities to provide their own experiences and offer their own solutions
• reforming discriminatory practices and lack of awareness of Trans, Non-Binary & Intersex people's needs and lived experiences
• embedding interpreting and translation into research studies
• engaging councils and social care in community research
• ensuring findings are disseminated back to communities in a way that suits them

Everyone came out of the celebration event touched by what they had heard, and by the resilience and determination of the researchers and their communities.  There was an energy in the room to  keep pushing to ensure research is relevant and meaningful to communities so that they can be better engaged. Only then can we genuinely start to address health inequalities in health and care services and outcomes.

Detailed reports of the community researcher findings and the wider independent REN evaluation will be available in June 2024.

*The other REN partner community organisations are Diversity Resource International (DRI), Sussex Interpreting Service (SIS), Brighton & Hove Switchboard, The Clare Project, Crawley Community Action, 3VA and Voluntary Action Arun and Chichester. Kent, Surrey & Sussex Clinical Research Network is the REN National Institute for Health & Care Research partner.

April 2024

Increasing Diversity in Research Participation: Research Engagement Network (REN) project update

The REN project is an NHS England funded project to work closely with communities. Our Sussex project has focused on co-designing and delivering a community researcher development programme for people who are Lesbian, Gay, Bisexual, Transgender, Queer/Questioning and other identities (LGBTQ+) and/or from minoritised ethnic backgrounds (further details on the REN can be found in our previous December Newsletter). It has been a tremendously exciting project and a great opportunity to reach underserved groups in Brighton and Sussex, whose voices are rarely heard in research studies.

We recruited 15 Community Researchers, and held two training sessions in Brighton, where volunteers discovered how best to collect qualitative data in their communities.

Terry Adams (pictured below), who led the training, said:

"Community research is based on conducting research with communities, not on communities.  Community Researchers reflect the background and characteristics of the people being researched.

Despite the limitations of time, the results coming from the research reveal a rich and robust set of findings that not only represent an authentic voice of these communities, but also offer insight into solutions to the issues for the NHS and the communities that can be effectively addressed.  All the Community Researchers have commented on the positive experience of participating. All desire to build on what they have learnt, improve their research skills, and contribute more to the objectives of the NHS health and social care research programmes."

The data collection is now complete. Each Community Researcher carrying out three interviews with members of the public to find out about their interest and understanding of health and care research. Their reports are now being consolidated and will be published in April/May. We look forward to sharing the results in our summer newsletter.

We are excited to be working on two upcoming REN events planned for April; a Sussex REN celebration event to recognise and acknowledge the partnership building, Community Researchers and work carried out so far; and a South-East Pan Regional event with members of the six REN projects in the region coming together to share learning. 

October 2023

NHS England REN Cohort 2 Partners – joint statement

Sussex Integrated Care System (ICS) in partnership with Brighton and Sussex Health Research Partnership (HRP) has been awarded £100,000 of funding from NHS England to work in partnership with voluntary, community and social enterprise (VCSE) organisations across Sussex, with the aim to engage minoritised groups from areas of deprivation and to improve research participation. 

The project will be led by Anna-Marie Bibby-Jones, Senior Research Fellow for Equality Diversity & Inclusion, Sussex Partnership NHS Foundation Trust; Jane Lodge, Associate Director of Public Involvement and Community Partnerships, Sussex Health and Care Partnership; and Virginia Govoni, Head of Health Research Partnership. 

Building on the NHS Sussex Community Ambassador Network and community feedback, they plan to co-create and implement a Community Researcher Development Programme. People from our local minoritised ethnic communities and Lesbian, Gay, Bisexual, Queer/Questioning and other identities (LGBTQ+) communities will be invited to receive Community Researcher training. They will reach out into various parts of Sussex to explore connections between communities and health and care research. Their findings will be crucial for guiding health and care providers and researchers on how we can do better at engaging marginalised groups. 

The project leads will also launch a new pan-Sussex Diversity in Health and Care Research Engagement Network to bring together our local Grassroots organisations, larger VCSEs, the Integrated Care System (ICS) and health and care researchers. An independent impact evaluation will be conducted by Professor of Social Work and Social Policy, Kish Bhatti-Sinclair from the University of Chichester.

Trust for Developing Communities will lead VCSE involvement in the project. Kaye Duerdoth, Deputy Chief Executive said: “I am looking forward to this new collaboration which brings community research learning opportunities as well as greater understanding about engaging with communities effectively. This insight will lead to improved services for our communities.”

Prof Martin Llewelyn, Clinical Director of Research and Innovation at University Hospital Sussex said: “The REN award comes at a very good time. Both the Trust and the HRP are setting their strategies for the next five years now. The award will help ensure there is really strong and diverse public input as these strategies take shape.” 

Other VCSEs involved in the project are Diversity Resource International (DRI), Sussex Interpreting Service (SIS), Brighton & Hove Switchboard, The Clare Project, Crawley Community Action, 3VA and Voluntary Action Arun and Chichester.

July 2023

Recruitment of Public Advisers (x4) to the HRP

We are recruiting public advisers to become members of our Health Research Partnership public, community, involvement and engagement advisory group (HRP PCIE advisory group). The group is a new venture and is currently being established. The aspiration is to grow this group to reach 10 – 12 members. The group will initially be piloted for 3 years. The role of public adviser to the HRP is key to the promotion of the interests of the public and local communities in all aspects of research by providing patient and public perspectives operationally and in strategic development.

VIEW THE ROLE PROFILE HERE >

VIEW THE FULL ADVERT HERE >

Recruitment open for new Research Manager role

Applications are open to join our team as Research Manager. View the role and apply below, or contact Zoe Boylan (Z.Boylan@sussex.ac.uk) for more info.

APPLY FOR THE ROLE HERE >

October 2022

The Health Research Partnership (HRP) was officially launched at a meeting on Friday 30 September. The meeting was well attended by representatives from across the partnership and number of stakeholders.

READ THE FULL STORY HERE >