PARTNERS Project: Development and implementation of a digital tool for multisectoralsupport and management of long-term condition

Principal Investigator: Professor Mari-Carmen Portillo

Co Applicants: Line Bragstad, Dr Dorit Kunkel, Dr Kat Bradbury, Dr Lindsay Welch, Hayden Kirk, Dr Caroline Barker, Sandra Bartolomeu Pires, Christopher Edwards, Lindsay Cherry, Francesca White, Caroline Aylott, Cathal Doyle.

Partners: University of Southampton, University of Oslo, Solent NHS Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS, Versus Arthritis, and Parkinson’s UK.

Lay Summary

Background to the research: Self-management is an approach to help people with long term conditions manage their health daily. Existing NHS self-management tools focus on healthcare (medication management, appointments) and fail to capture aspects of how people live with and adjust to 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 their family/carers. This intervention recognises the role of social support, voluntary sector, industry, and community groups in adjusting to living with a condition. Our next step is toadapt this intervention to the needs of people living with other conditions like Arthritis and for those living with more than one condition and create a digital tool.

Aim of the research: To develop, implement and evaluate a digital tool that supports the management of people with Parkinson’s Disease and/or Arthritis. The 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: The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able toaccess available resources and support). We will: 1. Work with our patient and public involvement (PPI) representatives, relevant voluntary organisations, health and social care providers, and key people involved in policy making and NHS strategy. They will have a voice ineach decision to ensure our tool is relevant and acceptable to those using it. 2. Host discussion groups with people with Parkinson’s Disease and/or Arthritis and theirfamily/carers to understand the positive and negative aspects of existing digital tools, from a patient perspective. 3. Design our self-management tool. 4. Test the tool through two primary care surgeries (GP) 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.

Deliverables: The research will generate: a digital tool to support more effective self-management of Parkinson’s Disease and/or Arthritis, recommendations for policy development, evidence for how to improve NHS services. Public Patient Involvement: We willwork with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to define their level of involvement, roles, methods to input and training needs. We will also explore what works best or what we should do differently intheir involvement.

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

What did we find out?

We found that people with Parkinson’s and/or arthritis, their carers and professionals involved in their care wanted a digital app that was:

•Simple

•Easy to navigate

•Hybrid – in person contact also signposted

Included:

•Community resources from voluntary/charity sector

•Free or inexpensive resources

•Links to peers/buddy for support

What next?

PARTNERS 2 has evolved, as a continuation project. This allowed time for:

•A suitable digital company to be found with previous experience of working with people with health condition

•Full briefing of the digital company about what was required of the digital web app.

•Development of a prototype app 

The PARTNERS 2 project will now:

Develop the prototype app with User involvement through a series of online workshops, feedback sessions and interviews.

Aim to gain full exposure of the app by having it adopted onto the My Medical Record platform at the University Hospital Southampton NHS Foundation Trust.