Chief investigators: Professor Mari Carmen Portillo, Professor of Long Term Conditions, School of Health Sciences, University of Southampton.

Dr Dorit Kunkel, Lecturer, University of Southampton and Research Design Service, School of Health Sciences

Team:

Dr Katherine Bradbury  Health Psychologist, Senior Research Fellow NIHR ARC Wessex Digital Health Lead University of Southampton.

 Dr Lindsay Welch, Associate Professor of Nursing Practice, Bournemouth University & University Hospitals Dorset

Sandra Bartolomeu Pires, PHD Researcher, School of Health Sciences, University of Southampton.

Professor Christopher Edwards, Consultant Rheumatologist, Honorary Chair of Clinical Rheumatology, Associate Director Southampton NIHR Clinical Research Facility, University Hospital Southampton (NHS) University of Southampton.

Dr Lindsey Cherry, Associate Professor (Podiatry Rheumatology), School of Health Sciences, University of Southampton.

Francesca White, Senior Strategic lead for Partnerships, Hampshire and Isle of Wight Integrated care board.

 Dr Hayden Kirk, Clinical Director Adults Southampton, Solent NHS Trust (Hampshire and Isle of Wight NHS Foundation Trust)

Caroline Aylott, Head of Research, Versus Arthritis,

Carolyn Fitton, Senior Research Assistant, School of Health Sciences, University of Southampton.

Gillian Merritt, Service Improvement Manager, Parkinson’s UK.

Peter Rhodes, Senior Programme Manager, Industry & Innovation, Health Innovation Wessex.

Partners: University of Southampton, Bournemouth University & University Hospitals Dorset, Hampshire and Isle of Wight NHS Foundation Trust, NIHR Clinical Research Facility, University Hospital Southampton, Hampshire and Isle of Wight Integrated care board, Versus Arthritis, Parkinson’s UK, Health Innovation Wessex.

Start: 1 October 2024

End: 31 March 2026

Summary

Self-management can help people with long term conditions manage their health better. Existing self-management tools focus on healthcare (medication management, appointments) and fail to understand how people live with and adjust to their long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups. We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and/ or Arthritis and their family/carers. This intervention recognises the role of social support, charities and other organisations in adjusting to living with a condition. Based on previous study findings where we looked at the literature and talked to patients and health care professionals, we co-produced a digital tool website/app ready for testing. 

Aim of the research:

To explore the acceptability (ease of use) and how helpful the tool is in supporting self-management by collecting data and by talking to patients and carers who have used it and health care workers. The PARTNERS tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community.

Design and methods:

Mixed methods acceptability and implementation study. The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able to access available resources and support).

We will test the PARTNERS tool with patient, carers, health professionals and voluntary organisations (Parkinson’s UK and Versus Arthritis). Testing will help understand how the tool is used and what helps or hinders its success. We will talk to people who used it to identify how useful and helpful it was and how to integrate it with their normal care. The research will support better self-management of Parkinson’s Disease and/or Arthritis, make recommendations for policy development and provide evidence for how to improve NHS services.

PPI:

We are working with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to decide their level of involvement, roles, ways to input and training needs. We will also explore what works best or what we should do differently in their involvement.

Dissemination:

We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters and public events.