Designed without us: the participatory deficit in women’s neighbourhood health

Our new Health Secretary, only the third female Labour MP to ever hold the post, published a book in 2019 called She Speaks: The Power of Women’s Voices. This begs the question: how much power will women’s voices be given to shape the new health agenda? 

Good intentions were set out in the Renewed Women’s Health Strategy, published in April, which promises to put women’s ‘voices and choices’ front and centre to address the myriad health failings facing women today. However, merely listening to women will not be enough – we need women to have the power to make meaningful decisions over their local health services if we are to see real improvement in their health outcomes.

Women face stark health inequalities, but current plans to address these fall short

The UK dropped from 20th to 28th (out of 38 countries) in OECD female life expectancy rankings between 2000 and 2023 – a decline underlied by serious failures in women’s healthcare. For example, women typically do not get an endometriosis diagnosis until nine years after first presenting with symptoms to a GP. 

The situation is even more dire for working-class women and those from ethnic minority backgrounds. Black women experience maternal mortality rates over twice as high as those of White women, and the life expectancy gap between the most and least deprived women stands at 8.4 years.

The Women’s Health Strategy rightly identifies that these are structural issues, not just performance failures. It outlines several methods to listen to women’s views to improve service design and delivery. In particular, it focuses on PROMs (Patient-Reported Outcome Measures) and PREMs (Patient-Reported Experience Measures) to gather feedback from female patients. 

However, while these can certainly be beneficial, merely receiving feedback is not a reliable route to substantial change. In the past, PROMs have largely been seen as a compliance exercise rather than a means to actively listen and act on patient concerns. Worse, as the Ockenden Report into Nottingham maternity services shows, consistent negative patient feedback can be deliberately ignored at a governance level, preventing changes to service delivery that could save patient lives.

Women need to have active decision-making power over local health services

Listening to the views of women is therefore only half the story. In order to embed meaningful change at the system level, women should be given the power to actively input into decision-making, and be granted a degree of governance over health services for even greater accountability. This way, women would be able to design services that are right for them. They could directly influence how services are staffed; for example, what their priorities are, and how to hold them to account if they fail.

While participation must be embedded in national strategy, it needs to be carried out at a local level. The Women’s Health Strategy does plan to establish a ‘women’s voices partnership’ to support UK-wide decision-making, and for Integrated Care Boards to ‘engage diverse groups of women in planning and delivery’ at a regional level, but it is unclear how far these women will be able to co-design services or impact local health strategy. At Demos, we advocate for more public service design to be done at a local level so that delivery of these services can be responsive to the real-life needs of the people who actually use them. This is particularly important when it comes to health services, which exist in a local ecosystem of services and neighbourhoods and so must be highly reactive to the immediate needs of local people.

Bristol’s ‘Bridging Gaps’ project demonstrates the impact of local women participating in the design of health services. The project – run by a GP and women who had experience of various traumas – aimed to improve GP practices for women with complex needs. Through co-design, regular meetings for coordination and shared decision-making power, the project truly empowered local women to shape the service. The impact on local healthcare offerings was transformative, resulting in the development of care coordinator roles, an information-sharing tool and even the establishment of a new clinic at one GP practice specifically for people with complex needs.

To replicate these benefits across the country, we need wholesale institutional change with the sufficient resources allocated to ensuring its success. Opportunities for local and hyper-local neighbourhood governance have been made easier with the introduction of the English Devolution and Community Empowerment Bill. The neighbourhood health model represents exactly the kind of institution-reshaping moment where this can be put into practice.

Yet, simply building neighbourhood governance structures is not enough. It is vital that these structures actively target those who are most excluded. Recent research has shown that GP surgeries in the most deprived areas are significantly less likely to have a patient participation group – one of the key mechanisms through which patients can impact their local health services. To combat low engagement, health services must work closely with local community organisations supporting marginalised women.

Granting power to more women can improve the relationship between citizen and state

Knowing that they are being listened to and that their decisions are being acted upon can be transformative for people’s relationship with the wider state. Through their involvement in the Bridging Gaps project, women increasingly reported feeling that their voice mattered, and that they now know they have power to make change happen. As Demos has argued, we are living through a democratic emergency in which the social contract between citizen and state has been broken. Rebuilding it requires giving people genuine power over the institutions that shape their lives and, in doing so, fuelling the ordinary hope that our democracy so urgently needs.

If our new Health Secretary truly believes in the power of women’s voices, the test is not whether women are listened to – it is whether they are given the power to act. That distinction is the difference between a strategy and a transformation.