THE ROLE OF PATIENT ADVOCACY ORGANISATIONS – NOTHING ABOUT US, WITHOUT US
Kathy R. Oliver (United Kingdom)

This presentation explores the many facets of patient organisations and why they bring such significant added value not only to the patient and caregiver journey but to other stakeholders across the disease spectrum.

Within their communities, patient organisations play important roles in gathering knowledge about and delivering support for their particular disease areas. But they are also increasingly at the forefront of patient engagement. Strong patient engagement, for example, now occurs in a wide range of fields including clinical trials and drug development, healthcare policy, pricing and reimbursement decisions and regulatory issues.

Indeed, there is a widely-voiced mantra in the patient organisation community: “Nothing about us, without us!”

In those five short words is enshrined the very essence of patient organisation engagement based on the notion that: “If my life as a patient depends on the results of a project, a decision or a research study then I - as the patient - need to be at the heart of those processes.”

In response to this concept, patient organisation engagement is fast becoming the new normal and “must have”. Involving patient organisations in meaningful partnerships across stakeholder groups ensures that the patient and caregiver perspective is clearly heard.

Patient organisations also raise substantial research funding, provide online communities for their patients and caregivers, and organise high quality education and training for patient advocates, as well as identifying unmet needs and filling the healthcare gaps that other initiatives don’t address.