MyPathway Persistent Pain co-design trial

persistent pain image

ADI is working with Health and Social Care Northern Ireland regarding new technologies to help improve the understanding of persistent pain and its management among people living in Northern Ireland. The purpose of developing this new pathway is to produce a digital solution which can be accessed by members of the public, people at risk of or living with persistent pain, their carers, families and friends as well as service providers to share information, tools and other resources.

ADI conducted a co-design trial with pain patients, as well as clinicians who specialise in pain. The trial lasted 3 weeks and encouraged trialists to use the MyPathway app daily, track their progress, access resources, answer questionnaires regarding their pain and complete specialised goals. Post-trial we held a feedback session for the trialists and trialists were encouraged to provide honest opinions, both positive and constructive.

The app has a resources section, where patients can access leaflets, audio, videos etc. relating to pain management. When asked about their general opinion of the resources, the overall consensus was that it was good to have all the information in one place and the resources were easy to understand but also informative. A persistent pain clinician from Northern Ireland stated “I think a lot of them were either the same or very similar to ones which I would use with my clinicians, so I would use them with patients. It’s nice to have it in one place as well, so you’re not going searching and searching, its all-in-one spot.”

Unfortunately, there is no cure for persistent pain, MyPathway Persistent Pain is an app designed to help people living with persistent pain, and how to manage their pain. One patient highlighted that this can be a difficult concept for some pain patients as they rely heavily on their doctors and are reluctant to invest their time into their own care. However, another patient commented about self-management programmes and that a lot of patients struggle to attend these, so the fact that they can access self-management resources remotely is a huge benefit. “I’m very concerned with people who are at work, who cannot attend self-management programmes or mothers who are busy and cannot attend self-management programmes. So I think definitely creating some kind of platform for people to look at when they’re taking time for themselves is really good”.

Self-management is such an important aspect of any long-term condition and one of the main objectives of MyPathway Persistent Pain is to replace the predominance of medication use with more person centred and empowering interventions. One of the patients commented that prior to using the app they were a passive receiver of care, and from using MyPathway Persistent Pain they have become much more active in their pain management.  “I became much more active in my understanding that I had a role to play in my own management of my own condition”.  

When discussing the benefits of goal setting, where patients are encouraged to set personal goals to help manage their pain, such as a morning stretch, one patient highlighted the current growing concern within the NHS regarding increased waiting times. “I’m thinking how long the waiting lists for joint surgeries will be and certainly people waiting for a joint replacement, this can be something they can have that is going to help them not focus on their sore knee or hip and how it interacts with their social economic lives. That’s really where we have to go”. For those patients not only living with persistent pain, but that are currently in pain and are due to receive surgery, this app can help manage pain and allow patients to focus on self-management.

One topic that was raised on several occasions was the issue with pain medication, often this can cause dependencies and some patients highlighted that they had been prescribed certain medication and that it had not been reviewed until years later. One patient said that they had been able to reduce their medication as a direct result of some of the advice they had read in the resources section of the app.  “That’s what educated me, what to look for and what to question how much I was on and how to engage with a GP? It’s harder to engage with GPs so sometimes when you come armed with a list and it also stops you from wasting time with a GP as well, cuts down on your appointments and also cuts down on your medication”.

Trialist interaction and feedback will help improve people’s lives and enable patients to learn how to manage their lives whilst living with chronic pain. We are now moving onto the next stage of the trial taking all feedback on board.