Patient and Public Involvement (PPI)

What Is ppi?

Patient and Public Involvement (PPI) in research means to be actively working in partnership with patients and the public with related lived experience to support the research team in planning, managing, designing, and carrying out research. The aim is to support research to be carried out with or by members of the public, rather than for them.

Patients and public are:

· patients and potential patients

· people who use health and social care services

· carers

· people from organisations that represent people who use services. This can be someone such as a lived experience expert or a peer support worker.

You can find out for about what PPI is by visiting the following websites.

· https://www.guysandstthomasbrc.nihr.ac.uk/researchers/patient-public-involvement-advice/ppi-toolkit/what-is-patient-and-public-involvement/

· https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/


PPI IN MODS AND BASIL

We are committed to involving patients and the public throughout all stages of our research to ensure our research remains focused on the needs of older adults who are living with long-term health conditions.

Our Patient and Public Involvement members joined our team for the MODS research programme in 2019.

We sent out expressions of interest through Involvement@York and Tees, Esk and Wear Valleys NHS Foundation Trust Involvement group, as well as asking some co-applicants if they knew anyone who would be interested from other PPI groups and organisations. Those who replied to this expression of interest were then invited to an information session. These informative meetings were held so that the study team could explain how we plan to work with our PPI members, the different PPI roles, such as an advisory group member or member of the independent steering group, and what might be expected of them within each PPI role. Following the information, PPI members could confirm their interest in becoming a member of the MODS PPI team.

Our PPI team is made up of older adults who have lived experience of multiple physical health conditions and/or low-mood or depression, and caregivers who provide support and care for older adults with a mixture of these health conditions.

Currently we have one PPI member who sits on the MODS independent programme steering group, one member who became a co-applicant on the MODS programme, and 8 PPI members who make with the PPI Advisory Group.

In March 2020, due to the COVID-19 pandemic, the MODS research programme was paused, and BASIL was created in response to the social isolation the lockdowns would cause. You can learn more about BASIL and our response to COVID-19 here: https://sites.google.com/nihr.ac.uk/basil/the-development-of-basil-support?authuser=0.

We are fortunate that the individuals who made up the MODS PPI team agreed to make up the BASIL PPI team.

HOW OUR PPI MEMBERS HAVE HELPED US




In April 2020, the MODS programme management team met and discussed a number of things to adapt the study process to be delivered remotely to create the BASIL research programme. The MODS and BASIL team is a group of individuals made up of researchers, healthcare professionals and individuals with lived experience of long-term health conditions (some of our PPI members). The group discussed the following:

  • The BASIL study logo and study title

  • The process of initial contact between the BASIL Study team and potential participants

  • Delivery of the BASIL Support Package via the telephone

  • Thoughts on encouraging participants to us technology such as video calling.

HOW DO I GET INVOLVED?

We are not currently recruiting new PPI members for either the MODS or BASIL studies. However, you can add your details to a mailing list (below) to register your interest, and should we recruit new members in the future, we will have your contact details to get in touch.


If you're interested in PPI outside of the MODS or BASIL studies, you can visit Involvement@York or Tees, Esk and Wear Valleys NHS Foundation Trust Involvement pages:

  • Involvement@York: https://www.york.ac.uk/research/themes/health-and-wellbeing/involvement@york/


  • TEWV Involvement: https://www.tewv.nhs.uk/get-involved/about/


MODS PPI Photos

Here are some photos from our first MODS Advisory Group Meeting:

Our first MODS PPI Advisory Group meeting started with a short presentation by the Chief Investigator, David Ekers.

The main focus of the first MODS PPI Advisory Group was to discuss the Participant Information Sheet. Feedback from this was group was used by the study team to amend the Participant Information Sheet to make this more suitable to our population group. For example, some of the feedback suggested that there was too much information on the first page, and that we needed to reduce this to provide a summary of the study and the important points before inviting the person to read on should they be interested in taking part. We amended the first page in light of this feedback, resulting in a 50% reduction in the number of words used and therefore making the participant information sheet more inviting to read.

EVENTS AND PUBLICATIONS OUR PPI MEMBERS HAVE CONTRIBUTED TO




Future events

We are hoping to hold a number of wider events throughout the duration of MODS. These will provide information about MODS including updates on how the research is progressing, and results when these are available. Importantly, the events will provide an opportunity for people interested in the research to come together to talk about their experiences and ideas, and to find out about opportunities to help with the research.

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