Primary care perspectives in trans health research – taking part in a Priority Setting Partnership

This work formed part of the Trans, Non-Binary and Gender Diverse Priority Setting Partnership (PSP), led by Lancaster University and affiliated with the James Lind Alliance (JLA). PSPs bring together healthcare professionals, patients, and support networks to identify the most important unanswered questions in a particular area of healthcare. By focusing on shared priorities, they aim to guide research that can meaningfully improve access to care and the quality of services. The JLA approach is internationally recognised, including by the World Health Organization, as a robust framework for setting research agendas.

The James Lind Alliance, who provide support to this PSP, are funded by the NIHR, while this particular partnership is funded by the charity Gendered Intelligence.

As part of the consultation, fourteen researchers and clinicians from a wide range of disciplines—including general practice, clinical trials, epidemiology, medical sociology, and gender studies—came together for a 90-minute discussion. Their conversation highlighted both the opportunities and the challenges involved in developing inclusive, trustworthy, and evidence-based primary care research in this field.

Data, coding, and visibility

A recurring theme was coding challenges in research using routinely collected primary care data. Current systems for recording sex, gender identity, and transition-related information are not standardised and not easily searchable.  People who obtain gender recognition certification receive a new NHS number – these practices make big data less useful for research in this area.

Participants described how relevant information, such as eligibility for screening programmes or for research can be lost when patients’ records are updated following transition. In some cases, practices rely on informal workarounds (e.g. separate spreadsheets) that are not captured or transferred to research datasets. This creates significant gaps in epidemiological evidence.

At the same time, the group recognised important tensions between improving data quality and protecting patient privacy. Visibility in health records potentially carries risks for trans individuals, and there are growing moves towards disengagement from data sharing, including opting out of national datasets. These dynamics highlight the need for recording systems that are both analytically robust and ethically sound.

Trust as a foundation for research and care

Trust and trustworthiness were identified as a critical issue underpinning many of the challenges discussed. Participants noted that reluctance to share data or engage with research is often grounded in lived experiences of stigma, discrimination, or misuse of information – issues which affect other marginalised groups in society and lead to gaps in research evidence (Ross S, et al. Barriers to Participation in Randomised Controlled Trials: A Systematic Review. Journal of Clinical Epidemiology. 1999;52(12):1143–1156. doi: 10.1016/s0895-4356(99)00141-9).

This creates a complex landscape for researchers: how to design inclusive studies that require data on sex and gender, while ensuring participants feel safe and protected. As one contributor put it, the question is how to “hold together the needs of inclusive research and protecting people at the same time.”

The discussion also acknowledged broader systemic factors, including concerns about long-term data security and the wider political and global contexts, which can further erode confidence in institutions.

Inclusion must start at the design stage

A strong consensus emerged that meaningful inclusion cannot be an afterthought. If trans and non-binary people are not considered at the study design stage, they are unlikely to be represented in datasets, analyses, or resulting clinical guidance.

Participants identified several practical opportunities:

• Redesigning trial protocols and templates to include appropriate data fields
• Standardising how sex and gender variables are captured across studies
• Embedding inclusion requirements within funding and governance processes
• Ensuring recruitment processes allow participants to self-identify rather than relying solely on clinical records

Including and accurately reporting trans participants, even in large datasets, is essential for building an evidence base that can meaningfully inform care.

Rethinking co-production and community engagement

The group emphasised that inclusion is not only about representation, but about how research is conducted. Traditional patient and public involvement (PPI) approaches may not always be accessible or appropriate for marginalised communities who have experienced healthcare and research institutions as untrustworthy.

Examples were shared of alternative models – such as community-led dinners rather than formal meetings in Universities – that can produce different, and often richer, insights. This raises important questions about what meaningful co-production looks like in practice, and how to ensure that research priorities genuinely reflect community needs.

An intersectional perspective was also highlighted as essential, recognising that experiences of healthcare are shaped by multiple, overlapping identities.

The role of primary care

Primary care sits at the centre of many of these issues: from data recording and screening coordination, to shared care arrangements and ongoing patient relationships.

However, participants noted a lack of clear guidance and training for primary care professionals, leaving both clinicians and patients uncertain about what to expect. Strengthening the evidence base through research is therefore closely linked to improving clinical confidence and service delivery.

Creating an enabling environment within the department

The discussion also turned inward, reflecting on what the department itself can do to support this work. These issues of inclusion are relevant across lots of our work.  Suggestions included:

• Increasing the visibility of trans and non-binary inclusion in departmental communications and research strategies
• Creating safe spaces for discussion and learning (e.g. about the categorisation of protected characteristics)
• Thinking differently and creatively about meaningful patient and public involvement
• Building interdisciplinary collaborations across the University
• Supporting researcher safety in highly politicised areas (trans healthcare being only one example)
• Embedding inclusion into everyday practices, rather than treating it as a one-off initiative

There was a shared recognition that progress requires both structural change and cultural shift.

Looking ahead

This focus group marks an important step in contributing primary care perspectives to the Trans Adults PSP. It also highlights the broader opportunity – and responsibility – for primary care research to address gaps in evidence, improve inclusivity, and rebuild trust with marginalised communities.

As the PSP survey remains open until 10 May, there is still time for trans people, friends and family and healthcare professionals and researchers to contribute their perspectives (https://wp.lancs.ac.uk/transadultspsp/).