Developing Public Patient Involvement (PPI) Panels with Children and Young Adults with Type 1 Diabetes (T1D) and Parents/Guardians to Co-Design and Co-Produce Research, Supports, and Policy 

Public and Patient Involvement (PPI) involves patients and members of the public working in partnership with research and healthcare teams to decide what to research and how best to carry out that research. TEENVOICET1D aims to establish, train, and facilitate adolescent and family PPI panels to work with University College Cork (UCC) researchers and healthcare professionals at Cork University Hospital paediatric diabetes clinic (CUHPDC). These PPI panels are integral for future interdisciplinary PPI research collaborations with UCC, with consultant leadership from the CUHPDC, in conjunction with Cork University Hospital Research Charity (CUHC).

Aims and objectives

The aim is to develop three PPI panels comprising of children and young adults with T1D and their parents/guardians to partner with researchers and healthcare professionals at CUHPDC. The related objectives are:

1. Establish an Advisory panel to leverage international best practice regarding PPI with adolescents.
2. Establish, develop and train 3 PPI panels.
3. Co-facilitate three workshops to encourage knowledge exchange and co-production to bridge the gap between research, policy, practices.
4. Co-develop a PPI with adolescents’ toolkit for health and social care professionals.
5. Co-develop a set of PPI research study priorities, together with future research funding proposals and grants

Methodology

TEENVOICET1D will be implemented through 4 discrete Work Packages (WP) over a nine month period:

WP1: Ethics and data management

Application to the UCC Social Research Ethics Review Committee (SREC) and a Data Management Plan.

WP2: PPI Panels 

Introductory Seminar, Promotion, Interviews and Recruitment

PPI Panel 1: 8 children (10-17 years) with T1D;

PPI Panel 2: 8 parents/guardians of children/young adults with T1D;

PPI Panel 3: 8 young adults (18-24 years) with T1D.

WP3: PPI Panel Training workshops 

PPI Panels training workshops

Co-development of PPI Toolkit

 WP 4: Communication and dissemination 

Seminar - PPI with adolescents

Launch/dissemination of PPI with adolescents toolkit

Project Funding and Dates

Funded by the Irish Research Council New Foundations Programme, this project runs from Jan 2023 – September 2023.

Project Team

Dr. Carol Kelleher and Paula Leocadio (Dept. of Management and Marketing & ISS21),  Dr. Eluska Fernandez (School of Applied Social Studies) and Dr Colin Hawkes (CUH/UCC), working in partnership with CUH Charity.

For further details contact: carol.kelleher@ucc.ie