Network aiming to grow research in Women’s Health reaches 200 members

The Women’s Health Research Network was set up by Health Innovation KSS and University Hospitals Sussex NHS Foundation Trust in May 2023 in response to the National Women’s Health Strategy for England.

The Women’s Health Strategy sets out the government’s long-term commitment to women’s health in addressing inequities in health outcomes and improving the health and wellbeing of women and girls in England. The priorities included within the strategy included a focus on research to aid the discovery, codesign and delivery of better women’s health services, that improve outcomes and experiences.

Health Innovation KSS supported Sussex, one of our local ICSs, to develop their own response the strategy. As part of this work and through discussions with women using local services, we discovered gaps and challenges that could be addressed through research. Conversations with the NIHR South East Regional Research Delivery Network (RRDN) (previously known as the clinical research network [CRN]) also confirmed that there is currently very little research focused on women, conducted by women, or participated in by women.

Launching the Women’s Health Research Network

In response to this context, Dr Sam Fraser, Health Innovation KSS, and Dr Kiersten Simmons, University Hospitals Sussex NHS Foundation Trust, set up the Women’s Health Research Network with the aim to collaborate, comment, support and grow research focusing on Women’s Health.

The network has over 200 members, comprising of the voice of lived experience, academics, clinicians and Voluntary, Charity and Social Enterprises (VCSEs). Membership has spread across the Kent, Surrey and Sussex region, and continues to grow. A survey of members showed that the research interests of the group include reproductive health (fertility, antenatal, intrapartum and postnatal care), menopause, mental health, physical activity and many more areas. It also identified the key aims of those in the network as:

• facilitating connections between individuals and / or organisations who work within the same areas of women’s health
• spreading knowledge about grants or applications to facilitate collaboration and avoid duplication

Four Women’s Health Research Network meetings have now been held and so far these have focussed on hearing from researchers working with seldom heard populations, ambitions for Women’s Health hubs, and the delivery of services across the lifespan.

Dr Sam Fraser said: “Through speaking to women with lived experience, we identified common themes such as not feeling heard or being dismissed and therefore not engaging with health and care services. We wanted to make change in a robust way but research takes headspace, capacity and the right skills, and often it’s not seen as everyone’s business. We created the Women’s Health Research Network to tackle this issue together – if you create a critical mass of people then you can do more to make change. Together we are challenging some of the issues facing women on a daily basis.”

Dr Kiersten Simmons said: “Despite clinical, academic, and political recognition and public outcry, women’s health research and healthcare services require improvement. Sussex is an area with significant disparities in access to healthcare. I was inspired to establish the Sussex Women’s Health Research Network when it was brought to my attention by Sam that there were pockets of great work that were being done regionally, but that were not gaining the recognition or funding that they deserved. I was also increasingly aware of the strength of collaboration between clinicians and researchers, in partnership with their communities and the newly formed integrated care system, in furthering healthcare research.”

Our latest meeting

At our most recent meeting (recording here), we focussed on how to engage seldom heard groups as participants in research. We heard from Maryclare Chapman (Consultant Midwife Public Health Maternity at Surrey and Sussex Healthcare NHS Trust) about the KSS CRN funded project “Inclusion and Access to Maternity Research in Women and Birthing People who are Black, Asian or from other Minority Ethnic groups”. Key findings of the work included:

• Racism, trust and cultural competence are a key barrier to inclusion in research.
• There was a profound desire from communities to be included in research, but it must meet their needs, their priorities and be approached in a culturally safe way.
• Midwifery staff were interested in research and wanted to include all voices but lacked confidence, time and the practical skills to do this.

We also heard form Hilary Bartle CEO of Stone Pillow, a VCSE organisation working in West Sussex to empower homeless people to transform their lives. Stonepillow have set up a Women’s group in response to the increasing high numbers of women becoming homeless or at risk of becoming homeless. The group supports in several ways including mental health support, addressing physical health needs, and providing social care or housing. Hilary talked about the need for VSCEs to demonstrate tangible evidence to achieve sustainability and how research can support them to capture the impact of the organisation in a way that enables future commissioning of such a transformative service.

Impact

The network has facilitated multiple beneficial partnerships, matching curiosity with practicality. This includes a dermatologist looking for support who was connected with researchers and the Applied Research Collaborative, a dementia and cognition researcher who has found partners to look at early markers of dementia in menopause and Stone Pillow also found support from network members for their application for funding to support community researchers.

Dr Claudia DeGiovanni is a Consultant Dermatologist, Lead for research Medicine Division and South East RRDN Dermatology Specialty Lead. She said: “The WHRN is a novel and valuable network. It has connected me with the lead researchers and advisors on my research project, supported me with my funding application and will also help with dissemination of the study findings. This collaboration is invaluable in ensuring that my study will be relevant and deliver for the Women of Sussex. By linking in with commissioners there is also an opportunity to develop pilot studies to improve care for women also. It is a really exciting collaboration with potential to lead in Women’s Health and research that could be replicated elsewhere in the country.”

Helen Membrey, Research Delivery Manager and Continuous Improvement Lead for the South East RRDN and NIHR Research Delivery Network (RDN), said: “In our region, we have a few forums focused on women’s reproductive and gynaecological health research, but there was a gap around wider health and care research issues for women such as menopause. The power of the WHRN has been the strength of its collaboration including clinicians, researchers and others working in partnership to address these gaps. We have used this space to share current research, provide a forum for debate and bring together working groups and collaborations around vital research questions for women’s health. The group has also highlighted the importance of understanding intersectionality in women’s research and the wider research inclusion agenda with presentations from health and care researchers focusing on homelessness, women from coastal communities and from different ethnic minority groups. I look forward to continuing to meet and work with the group to take forward this vital agenda.”

Looking to the future

The network leads are focusing on ensure the network is continually evolving. The challenge moving forward is going to be ensuring that the network is more participatory with more member inputting into its running.

If you’d like to become part of the network or want to hear more about the work presented at our latest meeting, please contact Sam Fraser.