Sustaining Co-design in Women’s Health: Lessons Beyond the Pilot Stage
Guest blog post by Kreena Dhiman, Lived Experience Partner and Sophie Lowry, Implementation and Involvement Manager at Health Innovation Network (HIN) South London
Co-design (the collaborative process of involving people with lived experience) has become a familiar feature of early-stage health and care innovation, yet its long-term role in spread, adoption and sustainment is often overlooked. After people and communities first gain access to an innovation, what is being done to ensure it continues to work for them months or years down the line? This is a question that arises time and time again.
This growing recognition is also reflected in the Renewed Women’s Health Strategy for England, which emphases the importance of the patient voice as a means of improving outcomes and reducing inequalities.
While discovery workshops, prototype testing, and pilot-phase engagement are now widely adopted at the start of the innovation journey, co-design often ends once an innovation goes live. Yet, this is also the point where involvement becomes more vital than ever. Adopting innovations into real-world settings inevitably brings on changing user needs and new challenges. Without continued involvement from a broad, representative set of voices, an innovation can easily drift further away from the needs of the communities it aims to serve.
What happens when co-design isn’t sustained
The consequences of dropping co-design after launch are predictable: an innovation that tested well in controlled environments can begin to falter in real-world use. Features that seemed intuitive during testing can become unsuitable for the needs of users in the context of their everyday life. Engagement declines as accessibility barriers emerge; assumptions made during early design no longer hold; and entire groups of users find the innovation doesn’t address their needs.
This is especially true in areas highlighted for major transformation in the Women’s Health Strategy, such as endometriosis care and gynaecology pathways. Significant national investments in designing new pathways and introducing new models of care will fail to deliver the long-term benefits needed unless patients remain involved beyond the initial design phase.
Fixing problems retrospectively is slower, more expensive, and more disruptive than sustaining lived‑experience involvement throughout. The key to ensuring an innovation evolves with (and meets) the needs of its audience, is to make sure co-design is sustained throughout an innovation’s entire lifecycle. This requires a shift in perception of co-design as an ‘early-stage phase’ in an innovation process, to being an integral long-term strategic mechanism.
Supporting long-term co-design relationships
Plexxa — an alumnus of the Health Innovation Network (HIN) South London’s Accelerating FemTech programme — offers a clear example of what long‑term co‑design can look like in practice. Their product, BLOOM⁴³, was developed in response to the real challenges patients face before and after breast surgery. The patient‑first approach deepened when Carly Moosah joined as the company’s first patient champion in 2023. Carly led patient interviews, trials, and focus groups that ensured the product evolved in line with what people preparing for, and recovering from, breast surgery said they needed most. Her ongoing involvement demonstrates how sustained lived‑experience codesign can anchor an innovation in the realities of the people it aims to serve.
Pillars of long-term co-design
The following pillars offer a practical checklist for teams aiming to integrate co-design long-term:
1. Make co-design a sustained practice, not a tokenistic one.
Standing lived experience panels, periodic re-discovery phases, and regular check-ins help teams identify unintended consequences early and adapt to changing user needs within an ever-changing healthcare landscape.
This is not about endlessly repeating the same workshop format, it’s about embedding lived experience into the full lifecycle of an innovation.
2. Reflect real communities: include diverse and underrepresented voices.
Moving beyond the default “GP patient group” model is essential. In the UK, patient and public involvement and engagement (PPIE) groups for health research are mostly composed of individuals that are 60+ years old, white, and female. Effective involvement requires reaching people who are underserved by the healthcare system, including those who experience digital exclusion and have intersectional needs. Partnering with trusted community organisations, who can help build relationships with communities, enables involvement for those whose voices may not be represented.
3. Creative approaches to involvement.
Underrepresented patient groups are less likely to partake in engagement due to a variety of systemic barriers. However, it cannot be assumed that underrepresented patient groups are refusing to volunteer, when often they aren’t being invited to participate in the first place. Creative approaches such as storytelling, drawing, and emotion mapping take working with people with lived experience out of hospitals and offices and into the community are key.
Creating spaces where people feel respected, believed, and protected from judgment is essential to enabling open participation. People from global majority communities may also need explicit assurances of psychological safety, as past experiences of stigma, discrimination, or compromised trust in healthcare can make involvement feel risky or exposing.
4. Review and refresh involvement, especially when planning to scale innovation.
As innovations grow, involvement must grow with them. Long-term involvement cannot rely on the same people forever – once someone becomes too familiar with the research environment, their contributions might begin to feel more shaped by that setting rather than the fresh, lived-experience perspective they started with. Therefore, it is key to plan early for rotating membership and consider how new populations will be identified and re-engaged.
When refreshing involvement, reviewing should also include adapting new approaches which may be appropriate to ensure meaningful involvement of different individuals and communities. This ensures relevance and representation, preventing assumptions that one context fits all.
5. Value lived experience: fair pay, clear expectations, and barrier removal.
Treating people as experts improves both the quality of insight and the equity of the process. This means ensuring people aren’t out of pocket for expenses, paying for time and being transparent about decision-making power.
It also means removing practical barriers such as travel, childcare, or accessibility needs. For instance, caring responsibilities disproportionally impact women in the UK as they are providing more than twice as much unpaid childcare per year as men. Additionally, carers from some global majorities in the UK are reportedly more likely to struggle financially and not receive enough support from care services. Covering the costs of childcare, elderly care, and travel would eliminate a major participation barrier for many.
6. Show the impact of how input shaped decisions.
Trust depends on transparency. Documenting the actions taken on the feedback given; giving honest explanations when suggestions can’t be implemented; and providing the resources for people to continue engaging beyond the initial activity, are all fundamental for maintaining long-term involvement. We call this “closing the loop”.
7. Embed involvement in systems and governance.
Long-term involvement lasts when it is structural. This includes lived experience representation in governance, named budget lines for involvement beyond pilots, and clear accountability for who is responsible for ensuring patient insight over time.
Conclusion
The meaningful involvement of people and communities throughout the lifecycle of an innovation ensures that solutions evolve with the people who use them, and that they remain relevant as needs change. These priorities are especially urgent in women’s health as the Women’s Health Strategy sets out major transformations across areas such as endometriosis, gynaecology, and menopause. Reforms in these areas will only succeed if women remain involved beyond initial design.
Co-design should not be considered as a one-off early-stage exercise in innovation; it is the key for building innovations that last. Sustainable impact is within reach for FemTech innovators when invest in lived experience–driven development that is continually adapting and evolving alongside the innovation across its lifecycle.