Why I'm Asking Older LGBTQIA+ Adults to Help Shape My Research — Before I Even Begin

Rainbow Connections is a PhD research project exploring social groups and activities for LGBTQIA+ adults aged 50 and over.

When we design research about a community, it only makes sense to design it with that community. That's the idea behind Public Involvement, and it's a principle I'm committed to throughout my PhD project, Rainbow Connections.

Before I run a single workshop or collect a single piece of data, I'm sitting down with older LGBTQIA+ adults aged 50 and over to ask a simple but important question: does this research actually work for you?

What Is Public Involvement and Why Does It Matter?

While PPI, or Public and Patient Involvement, is a term commonly associated with medical research, my work is not based in a clinical setting. For Rainbow Connections, the relevant term is simply Public Involvement (PI), which means involving members of the public as active contributors who help shape how research is designed and carried out, rather than as research participants.

In the UK, PI is guided by the NIHR's UK Standards for Public Involvement, which set out six core principles: inclusive opportunities, working together, support and learning, communications, impact, and governance.

In plain terms, the people most affected by research should have a real say in how it's done. Not a token consultation at the end, but meaningful input at the beginning, when it can actually change things.

For Rainbow Connections, a study about social groups, activities, and what helps older LGBTQIA+ adults feel socially connected, PI isn't just good practice. It's essential. Older LGBTQIA+ adults have distinct life experiences, specific language preferences, and very good reasons to be cautious about who is asking questions and why. If my materials, methods or language don't feel right to them, I won't get honest, meaningful data and the research will be weaker for it.

What the PI Session Actually Involves

I'm running one 90-minute online session with older LGBTQIA+ adults who have agreed to contribute as public advisors. The session is structured, but informal and conversational. There are no right or wrong answers, only honest reactions.

We'll work through five key areas together:

1. The research focus and workshop approach 

Does the topic feel relevant and meaningful? Does a creative, discussion-based workshop feel like a comfortable way to share experiences, or does it need rethinking?

2. Recruitment materials 

I'll share draft posters and adverts and ask contributors to tell me what language feels unclear, unwelcoming, or off. Recruitment is the front door to the research. If it doesn't feel right, people won't walk through it.

3. The participant questionnaire 

Contributors will have reviewed this in advance and will tell me whether any questions feel confusing, intrusive or could be phrased more inclusively. For a community where identity labels are personal and sometimes contested, getting this right really matters.

4. Workshop activities 

We'll look at how the annotation activity works (using sticky notes, physical or digital) and whether it feels accessible and comfortable. I'll share two different formats for exploring social connection, a visual mapping activity and a group discussion, and ask which feels more natural and expressive. Finally,

I'll share different ways participants might rank or compare types of social groups and activities, like dot voting or traffic light systems, and ask which feels clearest and easiest to use.

How This Will Directly Improve Rainbow Connections

This isn't a box-ticking exercise. Every area of feedback from the PI session will be reviewed and acted on before the study goes live. Here's specifically what could change:

Recruitment materials may be reworded to feel more welcoming and use language that resonates with older LGBTQIA+ adults rather than academic or clinical language

The questionnaire may be simplified, restructured, or have specific questions revised to be more inclusive and less burdensome

Workshop activities may be adjusted, or one format chosen over another, based on what contributors tell me feels most accessible and meaningful

The prioritisation task will use whichever format contributors find clearest, making it more likely participants engage fully rather than guess what I'm asking

Crucially, a summary document will be shared with contributors afterwards, showing exactly what changed because of their input. This reflects the impact standard of the UK PI framework. It's not enough to listen, you have to show that listening made a difference.

How This Connects to the UK Standards for Public Involvement

The UK Standards ask researchers to demonstrate PI that is inclusive, reciprocal, and impactful. Here's how this session maps onto those standards:

UK Standard	How Rainbow Connections addresses it
Inclusive Opportunities	Session is online, removing travel barriers and providing close captions; contributors choose their own pronouns; all formats are reviewed for accessibility
Working Together	Contributors are advisors, not just consultees. Their input directly shapes study design
Support and Learning	Session is structured to be welcoming with no right or wrong answers; materials shared in advance and blog post to provide additional details for public contributors
Communications	Plain language throughout; feedback summary shared after the session
Impact	Changes made as a result of PI will be documented and shared; contributors acknowledged in publications and the thesis
Governance	Contributors are fairly compensated, by voucher or bank payment, for their time and expertise

A Final Thought

Older LGBTQIA+ adults are not a hard-to-reach population. They are a population that research has historically failed to reach out to properly. PI is one way to begin correcting that. By involving people with living experience before the research starts, Rainbow Connections will be more trustworthy, more relevant, and more useful, not just to the academic community, but to the older LGBTQIA+ adults and the organisations that support them.

If you're an older LGBTQIA+ adult aged 50 and over and would like to know more about contributing to Rainbow Connections, get in touch.