Reproduced from Cambridge Research Methods Hub
by Clara M de Barros, Katie Saunders and Sally Crowe
Dr Catherine (Katie) Saunders, researcher, Cambridge, Clara M de Barros, member of the LGBTQ+ panel and public contributor, and Sally Crowe, public involvement facilitator and LGBTQ+ panel support joined participants from NIHR School for Public Health Research, the NIHR School for Primary Care Research and the NIHR School for Social Care Research in an online seminar about ‘Diversity and involvement: whom to involve?’ in October 2022.
With over 50 participants, the seminar proved a great opportunity to reflect on the work of the LGBTQ+ research panel who have been working with Katie since early 2020 and share our learning about ways of working together. Katie described her motivations for embarking on Patient and Public Involvement, including a need to feel that she is asking the right research questions, and matching knowledge of data and methodological experience to applied research. Katie also pointed out this is the ‘right thing to do’ and can help avoid blind spots in her research, which uses routine data to understand how to address health inequalities experienced by people who are LGBTQ+.
Clara and Sally then shared conversational points about the LGBTQ+ research involvement panel experience, both as a panel member and someone facilitating and supporting the panel. The aim here was not to tell webinar participants what to do (nor even to describe the outcomes of the involvement work), but to prompt researcher teams to reflect and think about their own practice.
As a first step in this conversation, Clara described the phenomenon and practice of ‘masking’ from the perspectives of being autistic and with an LGBTQ+ identity. Masking can leave some public contributors feeling uncomfortable and ‘not themselves’ in order to blend in and enable others to feel more comfortable; it is tiring and stressful.
Involvement that facilitates participation without the need for people to mask is desirable and probably more productive for research conversations.
It’s not the role of the public involvement panel to have to make the research team feel comfortable’
From a practical perspective, a webinar participant noted in the chat: ‘That is such a powerful and simple message; just asking people how we can make them feel most comfortable is important’.
Similarly, the recognition that public contributors (including those that identify as LGBTQ+) may have residual and ongoing trauma is an important consideration. Taking part in research should not be traumatic or triggering, and research teams need to plan accordingly. The webinar chat reflected many views about trauma (and it came up in the other presentations) and how researchers can use ‘trauma informed approaches’ in their work which ‘do not ignore the realities [of how people may respond as a result of trauma] but adapt to them’ (Chat comment).
Another area that Clara and Sally explored was the language used in LGBTQ+ (research) conversations. Sally described the care taken to prepare and understand the different meanings that phrases used in LGBTQ+ conversations may have for people. In the chat, someone gave the example of ‘queer’ which may have both positive and negative meanings. This part of the conversation also touched on the use of pronouns (when not everyone wants to use them) and how sexual orientation and gender identity may get conflated, or have different implications for research.
Creating safe environments
A safe environment for working together is the goal, and Clara described how this had been achieved from her perspective. Examples included: shared introduction biographies about people who were going to be part of the group, including researchers and Sally. This helped knowing who was going to be part of the ‘journey’ and allowed first impressions; clear information provided; obvious contacts for the team and encouragement to do this at any point with questions or suggestions; no pressure to disclose anything in particular and reassurance that anything shared was in confidence was respected. These elements all build trust.
The message that the team might not have an infallible plan to be perfect, but they were open to learning was also important, as was the lack of defensiveness from anyone on the team.
‘Perhaps just acknowledging this (that environments may not be safe) and inviting comments would go some way in making it easier for a wide range of public members to feel more at ease’. (Chat comment)
Finally, Clara felt that intersectionality, (the approach to understanding lived experience from the lens of multiple intersecting categories of oppression) was respected, encouraged, and could be applied toward positive change. Katie added that understanding intersectionality was also identified as one of our prioritised research themes, so this came through in the research conversations as well.
Both Katie and Sally talked about their fear of getting things wrong, that this was normal, and it is important to keep listening and be open to change. ‘I really appreciate your comment about not being afraid to fail in the process Katie – I feel as though I’m making a lot of mistakes’, ‘highlighting the need to be brave and embrace our vulnerabilities in research contexts’. (Chat comments)
Katie reflected that whilst Patient and Public Involvement in research is ‘non-linear and messy’, it has been a real pleasure to work with the panel on her research in developing research questions, thinking about the interpretation of research findings, and in communicating results. As well as these obvious benefits to the research (and the privilege to work with an interesting and diverse group), she has also been prompted by the panel to reflect critically on the power structures of researchers and research communities, and deal with challenges and critical feedback, all of which have been important parts of the learning process.
We would like to thank all panel members who have worked with Katie since 2020.
These reflections were first presented as part of a seminar with the three NIHR Schools of Public Health, Primary Care and Social Care Research, on October 3rd 2022.
LGBT Foundation research guidance
Practical guide for being inclusive in research (INVOLVE)
Published research paper that describes the authors’ priority setting process:
Crowe S, Barker E, Roberts M, Lloyd L, de Barros CM, Rebelo-Harris B, Meads C, Saunders CL (2021) Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes Research Involvement and Engagement 7:64
Details of some of the research informed by this involvement work are here: LGBT health: what our research tells us so far
The NIHR School for Public Health Research, the NIHR School for Primary Care Research and the NIHR School for Social Care Research are three national research schools funded by the National Institute for Health and Care Research (NIHR). Each national school is a unique collaboration between leading academic centres in England, carrying out outstanding research in their respective fields. This research can be applied across the country to meet the needs of policymakers, practitioners and the public.