Chronic Pain Ecosystem Mapping and Model

Developing a new community ecosystem model for addressing chronic pain

We are working with statutory and community health agencies to transform the chronic pain ecosystem in Northern Ireland (NI).

Globally, chronic pain is common, costly, and debilitating. In NI, approx. 400,000 persons or 30% of the adult population live with chronic pain (defined as pain enduring for longer than three months). The total cost to the NI economy is estimated to be 10% of annual GDP or c.£5bn.  

Current specialist multi-disciplinary chronic pain healthcare services are unable to bear the burden. People can wait years to get a diagnosis of the condition causing their pain. They then experience a further lengthy delay for a referral to a specialist clinic, if they can get one at all.

Burdened specialist pain services

During this waiting time, there are many patient risks leading to poor outcomes. People live in the mistaken belief that their pain will be “cured” and so make little effort to accept and adapt to their condition.  Worse, they can increase risk of medication dependency and adopt negative coping behaviours often leading to secondary health complications, such as substance misuse, depression, and disability. 

The pain services themselves are struggling to achieve consistent good outcomes largely due to the diversity of patient conditions, experiences, psychology, resources and capacities. Further, a substantial cohort of patients never access the services, especially in the western more rural areas and towns of NI with high health inequities. 

Our approach

Through Health Ecosystem Value Design® we are supporting a transition in NI pain care services that:

• Adopts a wider, affect and capacities-based framing of chronic pain.

• Reveals distinct assemblages of experiences with chronic pain to develop deeper understanding of the diverse nature of personal pain management capacities.

• Uses these insights to evaluate the fitness of and gaps in the current pain ecosystem.

• Reveals the deeper structures (powers, perceptions, priorities, paradigms, practices) that constrain emergence of a fitter and more viable ecosystem.

• Defines a novel chronic pain ecosystem (affective capacity) value model, measures, capabilities and learning system.

• Identifies a system of relational ideas, designs, services and actions at different levels of the pain ecosystem.

• Designs an emergent strategy for enacting and sustaining the ecosystem model and affective capacity co-creation over a desired transition period. 

A new social pain ecosystem platform

In addition to the above we are working with two technology partners (Grupo Pulso - Spain and Cognuse - Estonia) to design a new chronic pain ecosystem platform. This builds individual and community affective capacity by supporting persons with pain and those who can help them, to:

• Develop smarter cognition of their chronic pain

• Understand links between treatment, personal and social activity and pain, to help recall what works and what does not in context to a pattern or episode of pain relief or intensity

• Draw on support from the wider ecosystem of pain person peers, service and community actors. 

Overall, the goal of our work is to support a transition from a burdened pain care services model to a wider, integrative community and peer co-creation ecosystem. Doing so enables accelerated development of personal, family, community and professional chronic pain capacities, experiences and outcomes across NI.