Centring Women’s Voices and Experiences in Healthcare

By Dr Emma Craddock, Senior Lecturer in Health Research at Birmingham City University.

Research in healthcare has historically neglected to take into account women’s lived experiences of health and illness. Women have been underrepresented in medical trials.  Health conditions that specifically affect women are under-researched and misunderstood (Criado Perez, 2019). This has resulted in a lack of sex-disaggregated data and phenomena such as the ‘Yentl syndrome’ (Healy, 1991) where women are misdiagnosed and poorly treated unless their symptoms or diseases mirror those of men. Health Equity In England: The Marmot Review 10 Years On (2020) identifies a decrease in women’s life expectancy in the most deprived areas of England, evidencing the need to pay attention to women’s increasing health inequalities. This need is finally being addressed by the British government, who held a consultation in May 2021 to inform the development of England’s first Women’s Health Strategy, which aims ‘to place women’s voices at the centre of their healthcare and to improve women’s health and well-being’. It is vital that women’s lived experiences are recognised as a legitimate source of valuable knowledge to inform women’s health policy and practice.

Recent Patient and Public Involvement (PPI) initiatives have emphasised the need to value people’s lived experience, investing in partnerships that ‘have an ongoing dialogue and avoid tokenism’ to prevent the replication of existing health inequalities and exclusions (NHS, 2017: 7). NHS England’s (2017) statutory guidance for clinical commissioning groups emphasises seeking involvement from those with protected characteristics under the Equality Act 2010, which includes sex. Yet, there is a lack of research focusing on women’s and disadvantaged groups’ involvement in PPI initiatives. Furthermore, despite recognising the value of patients’ knowledge as ‘experts by experience’, little attention has been paid to how knowledge moves between patients, the public, and practitioners.

It is obvious that we need to include women’s voices and lived experiences in their healthcare provision, especially marginalised women who face multiple barriers to good health and who are often made invisible by unequal power structures in society. The key question is how. My recent research with the Women’s Health Network (WHN) in Bradford provides one answer to this question. WHN demonstrates a model of community and public engagement for women’s health that is effective in centring women’s voices and moving knowledge from women to healthcare providers and vice versa.

I had first heard about WHN at a presentation led by the then Chair of the network at the FiLiA conference in October 2019. As a qualitative and feminist researcher in health, I was intrigued to hear about this initiative as I had not encountered anything similar elsewhere. I worked closely with the organisers of WHN to develop and undertake research evaluating the network with the aim of producing an in-depth understanding of WHN, including its strengths, limitations, recommendations for improvement, and transferable lessons. The following sections provide some background information, some of the key findings of the research project (drawing on interviews with 12 members of WHN), and considers what the next steps are for WHN and beyond, with a call to action for women stakeholders in various localities to take up the baton of creating local Women’s Health Networks.

What is WHN?

“The Women’s Health Network is a group of professionals and women that are not professionals, whose aim is to make sure that all women in […] the area that the women's network covers, have access to screening, for the health needs being met, and beyond that as well, so they know where to go. And also, so that the services know where there are hidden voices, so where people are not getting access and looking into why that is. So, for me, that's what it's about; Expanding proper access for what women need to live a healthy life.”

WHN is a collective of women living and/or working in Bradford District & Craven, one of the most deprived areas of England, who aim ‘to improve the health and wellbeing of women and their families, through effective partnership working, with a particular focus on seldom heard voices’ (WHN, 2016). It was set up in 2016 after 8 months of research and consultation with local and national women and women’s groups. WHN is coordinated by CNet Empowering Communities’ Engaging People Team, one of the few remaining community empowerment networks in England, and is funded by the local Clinical Commissioning Groups (CCGs).

WHN members democratically elect an independent chair every two years. The Chair, alongside CNet, sets the direction of the network in relation to strategic and operational delivery. Hence, WHN is delivered by a myriad of organisations all with the aim of ensuring women’s health is placed high upon the agenda. 

Key findings of the research

WHN demonstrates the value of addressing women’s health holistically as a community issue utilising an asset-based community development and women-centred approach.

“So the ethos for me, is kind of firstly about being about women led, and being a safe space for women essentially. And having that kind of approach, that…we want to look at involving communities in their care, and having a bit more of a dialogue and a bottom-up approach, as opposed to that top down approach, that generally happens.”   

Despite the network’s aim to include individual members, and particularly ‘seldom heard’ women, attendees tend to mostly be professional women. This includes a range of community leaders, representatives from local organisations that work with women, healthcare professionals, public services, and voluntary and community sector organisations and charities. WHN thus functions as a network of mostly professional and some individual women, who share information and form connections between services, demonstrating successful inter-professional and inter-agency working which benefits service users.

The network acts as a bridge or conduit between the CCGs, professional services, and women from local communities. The CCGs can pass on health messaging to women and women can feed back their issues and needs to the CCGs:

“So the two strands of the network are the CCGs will pass down specific pieces of research that they need doing, but they will also then listen to the problems that women are telling us.” Previous Chair of WHN.

The emotional, relational and social dimensions of WHN are central to its success and sustainability, including the atmosphere of meetings, solidarity, trust, how the network feels to members, members’ passion and pride about WHN, and other intangibles. Funders should therefore allow the time and space required to build strong relationships and recognise qualitative measures of impact, not just quantifiable outcomes.

There were many other strengths of the network that participants spoke about including its impact on service design and delivery, its diversity and reach across communities, how it amplifies lesser heard women and topics, and provides female role models, making a difference to women and their communities.

Participants also identified continuing barriers to women accessing healthcare and barriers to women participating in WHN, with there being overlap between the two. These included: language barriers, including a plain English language barrier for native speakers; cultural and religious barriers; fear of speaking out; lack of trust; gendered barriers in healthcare and society (patriarchy; domestic violence); systemic barriers (poverty).           

What’s next for WHN?

The next steps identified were for WHN to go out to specific communities post Covid-19 to continue building relationships with community representatives and to encourage participation of individual women in WHN, particularly seldom heard women. Better publicity of WHN in a range of mediums and forums is required to increase local awareness of the network. Finally, continued funding is required to sustain WHN.

Call for action

Women’s health is a pressing issue that has long been neglected. There is an urgent need for attention to be paid to women’s lived experiences of health and for this experiential knowledge to be taken seriously by healthcare professionals and service providers. WHN demonstrates the value of addressing women’s health holistically as a community issue utilising an asset-based community development and women-centred approach.

The next steps from this research project will be to connect local women who are key stakeholders in various cities across the UK, in order to start planning the creation of local women’s health networks. If you are interested in being part of this, please contact emma.craddock@bcu.ac.uk, with an expression of interest.  

To read the research findings in more detail, please see the full report at: https://bcuassets.blob.core.windows.net/docs/whn-report-final-bcu-version-090322-132913779792459389.pdf

References

Criado Perez, C. (2019) Invisible Women: Exposing data bias in a world designed for men, London: Chatto and Windus.

Department of Health and Social Care (2021) Women’s Health Strategy: Call for Evidence, available at: https://www.gov.uk/government/consultations/womens-health-strategy-call-for-evidence/womens-health-strategy-call-for-evidence.

Healy, B. (1991) The Yentl Syndrome, The New England Journal of Medicine, 325: 274-276. Institute of Health Equity (2020) Health Equity in England: The Marmot Review 10 Years On, available at: https://www.instituteofhealthequity.org/resources-reports/marmot-review-10-years-on/the-marmot-review-10-years-on-full-report.pdf.

Institute of Health Equity (2020) Health Equity in England: The Marmot Review 10 Years On, available at: https://www.instituteofhealthequity.org/resources-reports/marmot-review-10-years-on/the-marmot-review-10-years-on-full-report.pdf.

NHS England (2017) Patient and public participation in commissioning health and care: Statutory guidance for clinical commissioning groups and NHS England. London: NHS England.

Women’s Health Network Project Team (2016) Women’s Health Network Final Report September 2016, available online at: https://cnet.org.uk/sites/default/files/2021-12/WHN%20Final%20Report_0.pdf