Navigating Reproductive Health Data with Care: Learning and Reflections from the project team

This blog is written by Tu, Tanjida and Sonia, three members of the ‘Data for reproductive health across the life course’ project team which is part of the National Institute for Health and Care Research (NIHR) Policy Research Unit in Reproductive Health. With editing support from Nicc and Aleem at Co-Production Collective. It was first published on the Policy Research Unit in Reproductive Health’s website on 17 September 2025.

In this blog, Tu, Tanjida and Sonia share their experiences of being involved in this team, what they learned, what worked well, and what they feel could be improved on.

About the project

In January 2024, the National Institute of Health and Care Research (NIHR) launched a £3 million research initiative – the Policy Research Unit in Reproductive Health. This investment is intended to generate high-quality research evidence that informs policy and improves reproductive health care across England.

Co-Production Collective is supporting the Unit to learn about co-production and work in a co-produced way with communities, researchers and policymakers. One of the ways this collaborative work is happening is through the research projects that the Unit is focussing on. One these projects is the ‘Data for reproductive health across the life course’ project. The project looks at existing health data, to examine inequalities and determine whether it is possible and desirable to create a linked reproductive health dataset. Currently information about people’s reproductive health is spread across separate datasets (collections of data) held by different organisations.

Our role on the project

We (Tu, Tanjida and Sonia along with Tara & Tania) are part of regular project team meetings where we collaborate as a team of 10-15 people, (this includes us five who are primarily there to share our lived experience, and also researchers some with clinical backgrounds). We work together to make decisions and feed into the development of the research.

As part of the project, we decided to hold a series of public deliberation events – this is a specific methodology designed to seek common agreement to solving problems. We wanted to find out the public’s views on reproductive health data linkage. We held one online workshop and two in person days with a group of approximately 40 people per event.

Tu’s Reflections

I expressed an interest in the project as I wanted to understand how reproductive health data are linked, and how decision-making around these data could be approached collaboratively. The events we held gave me valuable insight into the realities of reproductive health data: from the mapping of stakeholders and institutions involved in collecting, storing, and linking data, to the challenges of (dis)connection between datasets (collections of data), and the implications of linking them. I appreciated the opportunities to contribute to deciding research approaches, developing materials and writing up findings and especially appreciated the team’s respect, openness, and transparency.

During the workshops, I noticed that some voices were more present than others. For example, immigrant communities were underrepresented, and white men’s views were more frequently acknowledged, even when discussions were about women’s health. I want us to create dedicated spaces for minoritised groups such as racialised women, immigrants, and LGBT+ individuals to better understand different perspectives, especially when the topics being explored are focused on women’s health

Participants in the group sessions shared concerns around consent and privacy, particularly regarding the potential use of health data by private companies. They also expressed unease about the possibility of data being narrowed down and reidentified, raising fears that it could be exploited for profit rather than serving the public good. Taking part in the deliberation preparations and meetings with participants left me with some lingering reflections on reproductive data. On one hand, I see how crucial data linkage is as a technical intervention that helps inform and improve public health policies, especially for marginalised communities whose reproductive health needs are often overlooked. On the other hand, I feel it’s equally important to recognise people’s lived experiences and elements that often slip through frameworks that are only concerned with the data, like feelings, personal histories, local sentiments and relations.

My reflections highlighted an issue of trust, suggesting the need for more in-depth conversations about the challenges of linking data.

Tanjida’s Reflections

I got involved as I wanted to share my ideas and learn from others.

In the first deliberation meeting, some participants had trouble sharing their views due to technical issues with the online meeting but overall, I felt the sessions worked well. All the facilitators were well-trained to run the sessions, and overall, the participants appeared to feel comfortable.

The second session was in-person, and I observed the table discussions and noted that trust was a key theme. Even though data was de-identified, participants were concerned about who could access their information. One participant questioned why there was a greater focus on women's health conditions, suggesting that attention should also be given to men's reproductive health equally.

As with Tu’s reflections, I also noticed that all participants were fluent English speakers and again, I felt that including people from different ethnic backgrounds would bring more diverse perspectives.

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Tara, another member of the project team shared her thoughts on this with us as well. She said:

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I wasn't able to attend the in-person deliberation events but greatly valued hearing the feedback from other project members with lived experience. I was proud to be part of the decision-making process around the demographics of who we included in the deliberation events. As I live in the Midlands, I felt it was important for people outside London to be considered, meaning we intentionally included a proportionate number of people from underrepresented rural and coastal communities, who often don't have their voices heard.

The third session was again in-person. I contributed to the discussions in two different rooms and found that the size of the room and the composition of the group affected how well people engaged. It was highlighted to me just how sensitive a topic reproductive health is, people were thoughtful and cautious in sharing their views. This project provided me with a lot of valuable learning experiences. I gained insights from everyone, including health professionals and other team members.

After the sessions, participants said they enjoyed the workshops and learned a lot. Meeting the team in person was a highlight for me. They all are very supportive, and I felt valued and respected.

Sonia’s Reflections

I am really enjoying being involved in the Reproductive Health project. On the whole, I have felt very included in the decision making and feel my opinions have been respected.

Our comments and suggestions have been taken on board, and we have seen changes made throughout the many meetings leading up to the deliberation events. Our questioning informed the professionals to add or delete parts of the presentation pack that participants received.

I have enjoyed the meetings more than the in-person event, as I felt able to participate fully in the conversation, whereas it was difficult, and at some points frustrating, to be a ‘silent observer’! At the event I was able to observe both groups and there was a marked difference in the way both groups performed. I believe that the two spaces and different facilitators were contributing factors.

Like my other lived-experience colleagues, I was disappointed with the level of diversity of the groups. I think using an agency to find participants was possibly the main reason this occurred. Many people don’t know these agencies exist, especially if English is not their first language. I understand that using an agency freed up time for the organisers to work on other aspects of the work, but some of our group did offer to get participants and this was possibly a missed opportunity.

I am glad that we are still involved until October, as it is fascinating to see the feedback from all parties. I hope that our involvement will inform both the continuation of this project and other co-production activities that the research unit, and the professionals involved, may engage in in the future.

Shared Learning

As we have outlined in this blog, developing trust and ensuring sensitivity in co-producing research on reproductive health are both vital components when working in this way.

Our reflections raise questions about uncertainty and vulnerability in a world which is increasingly centred around data. Concerns about privacy, trust, and competing interests surface frequently in today’s context of increasing privatisation and shrinking social welfare, whether we’re filling out a GP form, buying a healthcare product, or simply scrolling through social media. They also manifest in the participants’ discussions during deliberation workshops. Data linkage cannot address all of these anxieties and alienating effects, but we hope it can at least spark deeper conversations about the complexities underlying the very data we are trying to link.

Co-production can create space for meaningful conversations and learning, even around complex and personal topics. However, to help co-production to offer valuable opportunities for learning, inclusion and representation it is important to pay ongoing attention to all of these areas as this can help to shape impactful research.

This research project is funded through the NIHR Policy Research Unit in Reproductive Health, reference NIHR206129. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Image Credits: Canva.