Why is it important to include patients and the public in your research?

Whether you are looking to collaborate with patients and the public or consult with them on your research, PPI is an increasingly vital way of ensuring that your research is important to those whose lives you are aiming to improve.

How can involving patients and the public benefit research?

  • Patient and public offer different perspectives from the research team i.e. lived experience of treatments and clinical services
  • PPI improves research quality and relevance, for example it can allow you to be more sensitive to certain communities, or make research more accessible.
  • Increasingly, there is a expectation from funders that PPI will be present in grant or funding applications.
  • Helps to ensure that the study design is realistic and possible.
  • Helps to avoid tokenistic involvement of patients and public.

Equality diversity and inclusion considerations for PPI

Below are some top tips for helping to make your research as accessible as possible for patients, the public and research participants:

  • Ensure PPI involvement as early as possible in the research process
  • Establish relationships with charities and patient groups, locally and nationally
  • Where possible, avoid medical or research jargon, and explain all acronyms
  • Consider the time that the PPI activities will run, including any possible time differences.
  • Consider how far people will need to travel to take part in PPI activities, and consider a hybrid or online approach
  • Be aware of any disability and care needs of your PPI members
  • Be clear about the involvement needed and negotiate clear ground rules around expectations e.g. how often they will hear from you or the research team.
  • Assess any training needs of those involved
  • Where possible, build adequate costs into grant applications. Costs can include, catering, meeting space, travel, care costs, days off work.
  • Be clear on remuneration for PPI work and how this will be given.
  • Ensure that there there is space for feedback from the PPI members, as well as sharing with them the value that they have brought to the project
  • Acknowledgment of PPI work is vital

Hear from other researchers about how we helped with their PPI work…

“We’re delighted to report that our two remaining Caregiver focus groups sessions have been filled. Thank you so much for all of your efforts and assistance with getting the word out – it has clearly made a massive impact.”

“In total we have 4 patients with AE that came through your assistance, which is great and has meant there has been good representation from this patient group, so thank you ever so much.”

PPI work that we can support you with

Encephalitis International has extensive experience with PPI. Below are some of the ways in which we have been able to contribute to research studies and support researchers with their PPI activities:

  • Identifying priority research topics
  • Contributing to the development of grant proposals and reviewing funding applications
  • Supporting participant recruitment for studies
  • Providing advice on research plans
  • Supporting research dissemination
  • Providing guidance on the design of research
  • Being members of advisory committees and chairing PPI groups/panels
  • Recruiting patients and their families or carers to be members of PPI panels
  • Putting research into practice e.g. write patient information sheets for GP surgeries
  • And so much more!


If you have found this information helpful, and would like to keep up-to-date with the work that we do and the latest encephalitis related news, campaigns, appeals, events and research, please consider becoming one of our professional members.


Page Created: 18 March 2024
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