PPI in your research

PPI_Tom_457x220What is Patient and Public Involvement (PPI)?

Patient and Public Involvement (PPI) is where members of the public are actively involved in research projects and research organisations. These activities recognise that people with lived-experiences contribute additional expertise and give valuable, novel insights.

Why is Patient and Public Involvement important?

PPI in research is expected for many funding streams (including the NIHR) and is a consideration made by the National Research Ethics Service when assessing applications. If PPI is not incorporated into your work, you will have to give a clear explanation of why not.

PPI can have the following benefits to your research:

  • Additional expertise – this could come from having experience of the illness or simply relate to their age or demographic
  • Ensuring the research questions are relevant and that the priorities reflect the needs of those affected
  • Improving patient experience and influencing trial recruitment and retention
  • Assessing ethics/acceptability – helping ensure your research is conducted in a way that is sensitive to the needs and preferences of your participants
  • Assisting with writing in a lay language

Who do we involve in research?

In Southampton we recognise that everyone has additional expertise which can add value to a study. We seek input from all members of the public. This includes patients, trial participants, families and carers of those living with a condition, or those who simply have an interest.

How do we involve the public in research?

Southampton is committed to working in partnership with the public and believes that involvement should occur across all levels including policy creation, project development, planning and delivery. Some of the ways you could utilise PPI activities to help with your research project are given below:

  • To help write and design patient literature for your participants
  • To comment on ethical issues associated with studies, and how they can be addressed
  • Working with you to ensure your study is appropriately designed
  • Advice you on how to share your findings to a wide audience, in a way the public can understand
  • Guide you on how to design questionnaires to get reliable, honest data from trial participants, particularly when questions are about sensitive topics
  • Sit on your steering committee, to provide input based on their direct experience of the topic being investigated.

You can readily involve the public in your work by accessing one or more of the following resources:

  • Adult PPI group
  • Database of adults interested in PPI activities
  • Young Adult Patient and Public Involvement Group (16-24yr)
  • Children and Young Person’s Group (8-16yr)
  • Alternatively we can advertise for a specific demographic or patient population

Our Patient and Public Involvement Officer can advise you on the appropriate people to be involving in your work.

What support is available?

Southampton has a full-time PPI Officer, Dr Caroline Barker, who supports researchers in their PPI work. Her role includes, but is not limited to:

  • Educating researchers about PPI
  • Providing advice and guidance to researchers considering PPI in their work
  • Organising and facilitating PPI meetings
  • Advertising for and inviting members of the public to specific PPI activities
  • Collecting information to monitor and assess the impact of PPI activities

Access to the PPI Officer and resources is free to staff. While the role is based across the NIHR Southampton Clinical Research Facility (CRF) and the NIHR Southampton Biomedical Research Centre (BRC), she is happy to support other researchers in their work, providing capacity allows. We recommend researchers cover the financial costs of reimbursing public members for their time and expenses.

The following documents are available to download:

  • Guidelines for researchers accessing any of the PPI groups (adult, young adult and children and young person’s)
  • Feedback form for PPI activities (for completion at the end of your PPI activity)

Additional resources