Lars Joensson

Head Patient Engagement Innovation Unit Pain

Patient-driven R&D

Changing current R&D practices through patient engagement

“When asked how my pain is today, I just say ‘I’m fine’”.

Chronic pain is an often-devastating condition, not only to patients, but also their families. At best, the burden is under-appreciated; at worst patients are not believed. Effective treatment options are severely lacking: of those that are available, many are limited by side effects or only treat some of the symptoms.

Only by listening to patients can we understand which outcomes are most important and develop interventions that make a meaningful difference to the patient’s life. Our vision is to have patients involved in every step of the R&D process.

“Too often, patients with a particular disease or syndrome are not asked what would be a favorable outcome for them during the R&D process”

Patient advocacy group representative

Throughout 2017, we have hosted meetings that brought together patient organisations from across Europe and the USA that represented patients with some of the most poorly understood, and under-recognised pain disorders. Some of the outcomes from these meetings include:

  • Development of new disease-specific patient reported outcome measures that can be used in future clinical trials
  • Co-creation of patient surveys and tools that provide insight into disease mechanisms and pathways to diagnosis and treatment
  • Direct patient input into our clinical trial protocols: significant changes were implemented to our inclusion criteria, allowing recruitment to proceed seamlessly
  • Development of pain language scales and functional outcome measures

Changing R&D practice through patient engagement is a continually evolving process that is only possible with the help and support of patient experts. As we look to the future, maintaining this dialogue will ensure we continue to move closer to delivering innovative treatments that make a meaningful, positive impact in patient’s daily lives.