Patient and public involvement in research
People affected by kidney disease bring lived experience that can improve research, policy and communications. We work closely with people affected by kidney disease to ensure research is shaped by real lived experience and patient voice.
Involving patients and the public can:
- Improve the relevance and quality of research
- Make information clearer and more accessible
- Highlight issues professionals may overlook
- Strengthen trust, fairness and transparency
Patient involvement request portal
Are you looking to involve patients in your work?
If you’re writing a grant, planning a study, or developing patient‑facing materials, we can help you choose the most helpful way to involve patients - from quick feedback through to longer‑term partnership.
What you can use the portal for:
- Get feedback on patient‑facing materials e.g. lay summaries, consent forms, adverts
- Ask for patient insight to help shape a research idea or proposal
- Explore the best way to involve patients, from early design through to sharing results
- Connect with one of our patient groups or networks, where appropriate
Not sure what you need yet?
If you’re unsure how best to involve patients or what type of input would be most helpful, email patients@kidneyresearchuk.org and we’ll help you think it through.
What happens after you submit a request?
We will review your request and suggest the most appropriate involvement route e.g. a patient group, a small piece of targeted feedback, or a wider call‑out.
We’ll get in touch if we need any further detail.
Top tips for involving patients in your research
Good patient and public involvement helps improve the quality, relevance and impact of research. These tips are based on best practice from across the UK research sector and are designed to help you involve patients in a meaningful and proportionate way.
- Be clear about why you want patient input
Think about what you need help with and what decisions patient input will influence. Being clear about the purpose helps patients give more useful feedback and sets realistic expectations.
- Involve patients as early as possible
Involvement often has the greatest impact before plans are fixed. Early input can help shape research questions, study design, and funding applications - not just materials at the end. Public involvement guidance
- Involve the right people
Different research projects need different perspectives. Think about who is most affected by the research, including people with experience of specific kidney conditions, treatments, or life situations.
- Use plain English throughout
Avoid jargon and explain acronyms every time you use them. Patient insight is most valuable when people clearly understand what you are asking them to comment on. Tips from NIHR
- Be specific about what you’re asking for
Let people know: What you want feedback on, how you will use it and when you need it by. Clear, focused questions make involvement easier and more meaningful.
- Make it easy to take part
Offer flexible options where possible, such as: email feedback, short online calls, small group discussions.
Be realistic about time and avoid asking for more than is needed.
- Support people properly
Share a short briefing in advance and explain: What the activity involves, any background information they need, what will happen after they share their views.
A simple “jargon buster” can make a big difference.
- Value people’s time and remove barriers
Cover reasonable costs, such as travel or childcare, where appropriate. Always thank people for their contributions and ensure involvement feels welcoming and respectful.
- Close the loop
Always tell patients what happened as a result of their input even if not all suggestions could be taken forward. This builds trust and shows that involvement is taken seriously.
Need support?
If you're unsure how or when to involve patients, or want help choosing the right approach, drop us a message and we're happy to support you.
Patient information days
Apply for a grant of up to £1,000 to support a patient information day. Bring together patients, clinicians, researchers and other experts to focus on topics that matter most to patients.
How they help:
- Share trusted information about kidney disease and research
- Give people the chance to ask questions and share experiences
- Support learning and engagement in a friendly, supportive space
Email patients@kidneyresearchuk.org to get more information on applying for a grant.
Got a question? Get in touch.
If you have a question or would like to chat about public and patient involvement, the team are happy to help. Please get in touch.