Chronic Pain Australia (CPA) has joined leading pain organisations across Australia and Aotearoa New Zealand in calling for urgent action to ensure pain outcomes continue to be measured following the decommissioning of the electronic Persistent Pain Outcomes Collaboration (ePPOC).
For more than 13 years, people living with chronic pain attending specialist pain services have shared information about their health, wellbeing and treatment outcomes through ePPOC. Their collective contribution has created one of the most significant pain outcomes datasets across Australia and Aotearoa New Zealand, providing valuable insights into both the effectiveness of pain services and the lived experience of persistent pain.
CPA Chair Nicolette Ellis said while the closure of ePPOC marks the end of an important chapter in pain outcomes measurement, the contribution made by consumers must not be lost.
“More than 145,000 people living with chronic pain have contributed their experiences and outcomes through ePPOC over the past 13 years. Their contribution has helped improve our understanding of pain and pain care, and it must not be in vain,” Ms Ellis said.
“Consumers have generously shared their stories, their challenges and their treatment outcomes because they believed it would lead to better care for people living with pain. We owe it to them to ensure that commitment continues.”
CPA has long advocated for chronic pain to be recognised and visible within Australia’s health data systems. Despite being one of the leading causes of disability and lost productivity, chronic pain remains poorly represented in national health datasets.
“When pain is invisible in data, it becomes invisible in policy, planning and investment,” Ms Ellis said.
“For too long, people living with chronic pain have struggled to be counted. If we cannot see the scale and impact of chronic pain in our health data, it becomes far more difficult to develop effective services, allocate resources and improve outcomes.”
While CPA shares the sector’s concern about the loss of ePPOC, the organisation remains committed to ensuring the lived experience of people living with pain continues to be measured and reported.
For more than 12 years, CPA has collected and reported consumer insights through initiatives such as the National Pain Report and Kids in Pain Report. These reports provide a unique perspective on the everyday realities of living with pain, highlighting barriers to care, treatment experiences, quality of life impacts and opportunities for health system reform.
“As Australia’s national consumer voice for people living with chronic pain, we will continue to ensure the lived experience of pain is heard, measured and reported,” Ms Ellis said.
“Consumers should not simply be contributors of data. They should be partners in how information is collected, interpreted and used to improve care and inform policy.”
CPA supports the joint call from the pain sector for a contemporary, sustainable and consumer-centred approach to pain outcomes measurement that preserves the ability to understand the experiences and outcomes of people living with pain.
“It would be a profound mistake if the closure of ePPOC resulted in chronic pain becoming even less visible within our health system,” Ms Ellis said.
CPA’s statement accompanies a joint media release issued by leading pain organisations across Australia and Aotearoa New Zealand calling for a contemporary, sustainable and consumer-centred approach to pain outcomes measurement.
For any media enquiries please contact us at media@chronicpainaustralia.org.au