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Research means more people live longer after transplant

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Patient involvement for researchers

Pivotal trial patient, Mimi Hoare, and nurse, Elizabeth Clarke

What can patient involvement do for research?

  • Provide a different perspective based on personal knowledge and experience of living with kidney disease.
  • Improve the quality of research by using accessible language, ensuring appropriate methods are proposed for studies and increasing engagement and participation from other patients.
  • Make research more relevant by identifying research topics patients want.
  • It can focus research on patient need through patient reported outcomes.
  • Increase awareness of the impact of research by patients sharing their own stories.

There is an increased expectation from funders that applicants show genuine patient involvement in proposals in order to support funding.

“It’s important for researchers to understand that the questions they are trying to answer have meaning for patients.” Professor John Feehally

Patient involvement tips

Patients are experts by experience and their experience that can help transform research.
There are some key things to consider when deciding why and how to involve patients in research.

Top tips

  • Understand why you want to involve patients in your research. It will help you work out who you want to involve and how you want to involve them.
  • Keep it simple – avoid using jargon and lways explain acronyms.
  • Explain clearly what the research is – what is the problem you are addressing, why are you looking at it, how will patients be affected by the outcome?
  • Be clear what your expectations are from the beginning and be realistic about what you are asking patients to do.
  • Decide who to involve (person specifications as well as patient experience) and how you will reach them.
  • Know what you need to support their activity; role descriptions, briefings, jargon buster and confidentiality agreement.
  • Show appreciation/benefits for patients being involved are important eg. lab visit, keeping them informed of developments, share results, reimburse costs such as travel.

Possible challenges

  • Finding suitable patients – do you need particular experience/knowledge from a patient?
  • Tailoring support – flexibility is key. Understanding who you have involved and tailoring your support to their needs is important. Always consider their feedback in adapting and developing your processes for involvement.
  • Definition of roles – be clear what you require from patients being involved in research.
  • Manage expectations – be realistic about how much a patient will need to give to the project, will there be times when a lot is needed then other times where interaction will be less.
  • Consider what response you want to capture – are the viewpoints of a few key patients enough or do you require a wider insight from a larger group of patients. Our Kidney Voices for Research community could help with this.
  • Measuring and showing value – it is essential to keep patients informed as the project progresses and show how their work is adding value.

How we can help

We can help support you engage with patients and involve them in research

Kidney Voices for Research

Kidney Voices for Research in our community of patients interested in research. It is a space for anyone affected by kidney disease to; share their experiences of research, hear about the latest research, comment on treatment and consultations and find out how to get involved.

How can it help you?

Do you want to consult patients on research questions, get patient input on materials and lay summaries or develop patient-led outcomes? Kidney Voices is a way for you to connect with patients, to share events and opportunities and find the patient voice to inform your work.

Contact our Patient Involvement Officer for more information.

Patient information day grants

Do you want to?

  • Showcase your work?
  • Network with patients?
  • Provide information and support by bringing patients and researchers together?
  • Hear from patients?

What you can do

You can hold a patient information day to bring together patients, clinicians, researchers and medical experts to talk about things that really matter to them.

Patient information day grants are available up to £2,000.

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