Patient and public involvement (PPI) is defined by NIHR to be:

“Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research.” (1)

At its best, PPI is enjoyable. It builds trust, challenges assumptions, and strengthens studies in surprising ways. It gives people with lived experience a voice in shaping how research is designed and delivered.

At its worst, PPI can feel stressful, awkward, tokenistic — or even unethical if people are consulted but then ignored.

For researchers in haematology, meaningful involvement matters. The good news is that PPI doesn’t have to be intimidating. If you’re unsure where to begin, start withthese three questions.

1) What could I genuinely learn from PPI that would improve this study?
Before thinking about logistics, funding, or methods, pause and reflect.

At this stage of your project, what don’t you know? Where might your blind spots be?

If you are early in study design, your questions might be broad:
- How do patients experience this condition?
- What outcomes actually matter to them?
- What makes care feel burdensome or supportive?

If your protocol is already well developed, broad discussions are less helpful.
Instead, focus on specific uncertainties:
- Are your recruitment materials clear and respectful?
- Is your proposed visit schedule realistic for people managing fatigue or transfusion
schedules?
- Are your chosen outcomes meaningful in daily life?

In haematology research, small practical insights can significantly influence the
feasibility and usefulness of a study. Often, it is seemingly “small” adjustments that
determine whether a study succeeds.

2) What type of PPI is proportionate to my project?

“PPI” covers a wide spectrum. It might involve:

A one-off conversation with someone with lived experience
A short-term advisory discussion on study materials
A patient advisory group meeting regularly throughout the project
Full co-production, where decisions are shared throughout

It’s important to think about what is proportionate - to match the scale of involvement
to:

What you want to learn
The stage of your research
The time and funding available
Your own experience with PPI

Guidance on payment and budgeting is available from the National Institute for Health and Care Research, (2) and HaemSTAR may be able to help with support.

One common barrier for researchers new to PPI is aiming for perfection. The perfect can become the enemy of the good.

Most small projects do not require large, complex PPI structures. Starting with a thoughtful, well-prepared conversation with one person is far better than delaying involvement because you feel it isn’t big enough.

Think about existing relationships. Do you already know clinicians who can connect you with patient groups? Have you previously worked with patients who might be willing to contribute? Trust and continuity can make PPI less stressful and more effective.

3) How will I use — and show — the impact of PPI?

This is the difference between meaningful involvement and tokenism.

If people give their time and experience, it must shape something tangible.

One practical approach is to keep an “impact log” after each PPI interaction:

 What was discussed?
 What feedback was given?
 What changes were made as a result?
 If no change was made, why not?

Closing the loop is also essential. People who contribute should know what happened because of their input - this builds trust and makes future involvement stronger.

When publishing, the EQUATOR Network provides the GRIPP2 reporting checklist, which helps researchers transparently describe PPI in publications. (3)

Final thoughts: PPI is a research skill

PPI is not an optional extra or a box to tick for funders. It is a research skill, just like study design, statistical analysis, or scientific writing. Like any skill, it improves with practice.

You do not need to be an expert to begin. You need curiosity, respect for lived experience, and a willingness to adapt your plans

If you are early in your career within haematology research, developing confidence in PPI now will strengthen your future grant applications, collaborations, and — most importantly — the relevance of your work.

Start where you are.
Be clear about what you want to learn.
Keep it proportionate.
Show the impact.

References

1. Briefing notes for researchers - public involvement in NHS, health and social care research | NIHR. Accessed February 17, 2026. https://www.nihr.ac.uk/briefing-notes-researchers-public-involvement-nhs-health-and-social-care-research

2. Payment guidance for researchers and professionals | NIHR. Accessed February 17, 2026. https://www.nihr.ac.uk/about-us/who-we-are/policies-and-guidelines/payment-guidance-researchers-and-professionals

3. Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ.2017;358:j3453. doi:10.1136/bmj.j3453

1) What could I genuinely learn from PPI that would improve this study?Before thinking about logistics, funding, or methods, pause and reflect.

2) What type of PPI is proportionate to my project?

3) How will I use — and show — the impact of PPI?

Final thoughts: PPI is a research skill

1) What could I genuinely learn from PPI that would improve this study?
Before thinking about logistics, funding, or methods, pause and reflect.