Summmary of Activities, July 2019- December 2020
December 22nd, 2020
The iPSpine Patient Advisory Board (PAB) was established to help the consortium to define patients needs, advise on strategy to optimally address this needs, and to inform patients on the project results. The PAB is comprised of patients, engagement experts, an ethicist, and potential end-users of the iPSpine therapy (Figure 1.). It is co-chaired by Esther Metting, a patient representative, and Karin Jongsma, an expert in medical ethics. The members are located in the United Kingdom, The Netherlands, Finland, and Austria, and they have connections to patients across Europe.
Figure 1. The structure of the Patient Advisory Board.
The PAB kick-off meeting was held October 30 2019, the PAB members came together for the first time via teleconference and the timeline of activities over the project was set out (Figure 2). The PAB met again in March and October of 2020 to discuss progress and prioritize activties. In the first 24 months of the project, the overall goals of PAB included; 1) generating informational materials about the project, 2) raising awareness of the project in patient networks and in the general public, and 3) patient and scientist communication. The first two goals were achieved by the accomplishment of the following:
Figure 2. Current timeline of PAB activities over the course of the 5-year project.
Animation: As one of it’s first tasks, the PAB, together with the consortium, created an animation to tell the iPSpine story. The purpose of this animation is to spread awareness of the iPSpine project in patient communities and the general public. Our co-chairs, Esther Metting and Karin Jongsma represented the PAB at the annual consortium meeting in Nantes, France on 29th of January 2020. Esther presented the PAB accomplishments and updates during the meeting. This moment also marked the official launch of the iPSpine animation and branding.
Frequently Asked Questions: In order to address common questions that patients might have about the project, the novel therapy, or what it means for them, the PAB created a FAQ section on the website. The questions were based on conversations during the creation of the animation, as well as emails from interested patients and PAB meetings. This document will be updated as necessary with new questions and refined answers as the project progresses.
Patient Stories: Through sharing patient journeys, a dialogue has begun between the scientists and patients, and can continue on throughout the project. Three patient advocates for the iPSpine PAB wrote about their experiences living with lower back pain: https://ipspine.eu/patient-stories/. The stories were shared with the iPSpine scientists to begin communication with the scientists. The stories were also shared on the website and social media channels to share with the iPSpine community and public what iPSpine means to the patients living with the condition the therapy will ultimately treat.
Next steps 2021: Improving patient and Scientist Communication:
In 2021, the focus will be on improving patient and scientist communication, by for example developing platforms for communication, workshops, panels, guest presentations of patients at scientific conferences.
Do you suffer from lower back pain? Are you interested in providing your perspective and helping to improve our project? Join our Patient Feedback Group!
We received a number of requests from patients to be involved in the project. As we have limited space on the PAB, we have created a rolling-enrollment patient feedback group for instances when we would like patient-specific feedback, which might include surveys, translation of materials, and review of website content. If you would like to join our patient network, please send an email to firstname.lastname@example.org