The Department of Finance’s Innovation Lab Team, the Public Health Agency (PHA), Patient & Client Council (PCC) and Health and Social Care Board (HSCB) are working with service users and providers to find innovative ways of designing an online tool to support people living with chronic pain.
At what level did the PPI take place?
- One to one;
- Service development/delivery;
- Commissioning/policy.
PPI helped the project to
- Improve efficiency of a service;
- Improve quality;
- Improve safety;
- Inform commissioning;
- Increase ownership.
Background
The Department of Finance and Personnel, Innovation Lab, in conjunction with the Public Health Agency (PHA) and Patient & Client Council (PCC), are working with service users and providers to find innovative ways of designing an online tool to support people living with chronic pain.
In Feb 2014 the PCC published a report telling the stories of 2,500 people living with chronic pain. Within the report several recommendations were outlined on how long-term pain sufferers could be supported.
One such recommendation was improving information resources for people who live with long-term pain. Therefore, the PHA and PCC asked the Innovation Lab Team to help with the development the development of an innovative web based tool(s), working collaboratively with services users, software developers, digital transformation service and health care providers. This involvement work was undertaken to:
• facilitate a hackathon to develop ideas for a web based tool;
• support the development of prototypes.
Following this, the PHA, HSCB, PCC and voluntary groups through the Northern Ireland Pain Forum, have been working on the development of web-pages on NIDirect to improve information and support. In the development of these web-pages it was recognised that a flat information based approach as employed by NIDirect may not meet the needs of the particular group of users, whose attention span and ability to work with text based information is often limited due to their chronic suffering of persistent and debilitating pain.
Aim of involvement
The project undertook to:
• gather new insights from people who were living with long-term pain and providers of services;
• bring stakeholders together in a collaborative process;
• facilitate a hackathon to develop ideas for a web based tool;
• support the development of prototypes.
Method(s) of Involvement
A range of methods were used to involve people, including:
• Electronic engagement;
• One to one interview ;
• Public meetings, roadshows and seminars;
• Questionnaires ;
• Consultations ;
• Deliberative mapping ;
• Focus group;
• Formalised involvement on strategic groups;
• Policy Hack ;
• Task and finish/Project group;
• Consensus building/dialogue;
• Future search.
Challenges
People with persistent pain experience a wide range of levels of physical and mental disability and distress, which makes it challenging for them to engage in events like those we were able to organise in the limited time available with the funding we had to spend quickly.
People were reached through social media. It was found, not unexpectedly, that most participants were middle class and hence not as representative of the patient population.
Outcomes due to involvement
The Forum has met four times since June 2015 and established four work streams and a service user reference group to progress priority areas identified by the Forum. In future it is likely to meet annually to share progress and coordinate work through its work streams and wider membership.
A range of outcomes have been achieved:
• Co authorship of first British Pain Society Core Standards for Pain Management Services, 2015;
• Strong working relationships with a wide range of stakeholders in HSCB, PHA, PCC, Business Services Organisation (BSO), Health and Social Care Trusts (HSCTs), primary and community care settings, voluntary organisations and patient groups;
• A comprehensive costing and phased five year pain management service development plan as part of the HSCB elective care plan, to include voluntary, community, primary, secondary and interagency services;
• Inclusion in the regional commissioning and HSCT development plans 2016/17 of pain management as separate section but integrated with other specialities like rheumatology and orthopaedics;
• Outcomes focused pain management service Integrated Care Partnership (ICP) specification and identification of pain management as an ICP priority 2016/17;
• Co designed fibromyalgia pathway in collaboration with Rheumatology Outpatient Reform Workstream;
• Webpage and content design for first tranche of HSC information portal on ‘NI direct’ governmental website;
• Self-management interventions inventory and specification for commissioners of services in voluntary, community, primary, secondary and tertiary care settings;
• NI wide myalgic encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) service design and implementation;
• Inclusion in community wellbeing hub and Department of Communities (DoC) condition management programme re-launch programme of work of persistent pain;
• Contribution to Department of Health (DoH) Health Improvement Programme for Government (PfG) Indicator Long Term Conditions work;
• Pilot of CBT based primary care group pain management programme in South Eastern HSCT ICP areas.
Timeframe
November 2016 – current
Further Information
For further information, contact:
Christine McMaster (Public Health Consultant and convener of NI pain forum)
Public Health Agency
Email: Christine.mcmaster@hscni.net
Tel: 07717 731804