Abstract

Who is the ultimate citizen scientist? A fairly recently coined term, “citizen science,” refers to a collaborative approach in which members of the public - citizen scientists - actively participate in various stages of scientific projects. Patient experts represent a fundamental group of citizen scientists who may not have scientific training, yet contribute their time, effort, and expertise for the development of a novel therapy or treatment. As end users and beneficiaries of healthcare interventions, patients possess unique insights, perspectives, and experiences that can significantly enhance the quality and relevance of research and therapeutic development.

While big steps have been taken to ensure patients are included from the beginning, meaningfully engaging with them throughout a project’s lifespan remains a challenge. This is especially true in early stages of research, where applications in the clinic are distant, but where patient input could have a larger effect in shaping the research being conducted.

Here we want to showcase the challenges, strategies, and successes from the patient advisory board (PAB) of the interdisciplinary EU Horizon 2020 project iPSpine, a prime example of an early stage research project that aims to develop a new therapy for chronic lower back pain. The iPSpine PAB is comprised of a combination of patient experts, researchers, and patient engagement specialists. By providing their unique experience and expertise, this group has contributed to the research surrounding iPSpine.

Over the course of the project, this board has focused on:
- Establishing a shared vision document outlining the goals and roles of our PAB members, along with strategies to achieve them.
- Sharing patient stories, an in-depth look into their lives, to underpin the necessity of iPSpine’s research and to provide a connection between them and the researchers working to develop their treatment.
- Fostering productive dialogue between the PAB and consortium researchers, utilizing both formal meetings and informal online science cafes. By placing patients in the project’s scientific advisory board, they have also been given a voice at the most central level of the project.
- Facilitating co-creation between researchers and patients to enable patient participation in the research being disseminated and communicated. One example of this is their involvement in shaping the ‘framework of responsibilization” developed during the project. Their support in this framework has provided key insights on promoting responsible conduct and innovation of research, as well as defining the knowledge and skills researchers need to take responsibility.

While challenges remain in structurally identifying effective approaches to patient engagement, we are actively reflecting on these issues in our project's final year. Moreover, as iPSpine empowers patients to voice their perspectives and take an active role, we explore the transition from dialogue to tangible influence within the project. Our journey contributes not only to iPSpine but also to the broader discourse on open science, illustrating the impact of patient engagement on research quality and relevance.