Patient Research Partners
A Patient Research Partner (PRP) is defined [1] as "a person (or relative) with a relevant disease who operates as an active research team member on an equal basis with professional researchers, adding the benefit of their experiential knowledge to any phase of a project."
RTCure has a dedicated Patient Engagement Expert (Susanne Karlfeldt), who works as the coordinator and facilitator for the PRP involvement in the project. Susanne keeps together the network of all involved PRPs and arranges specific workshops, meetings and TCs for the group. She is also responsible for communicating the PRP group’s interests, concerns and feedback to the Management of the project. The meeting minutes from the PRP meetings are distributed to the whole consortium to take part of.
Initially the PRPs were organized per work package, we allocated one or more PRP to all work packages (WP) based on specific preferences from the respective PRP, or if there were no specific preference, where it was needed. The aim was to have at least one PRP per work package. However, nine months into the project the PRP group decided to change this setting. It turned out that this organization was not optimal, neither for the PRP nor the work packages. Therefore we changed the setting and now the PRP group is an entity that can be addressed with different tasks, questions, activities etc from the different research groups and work packages in the network. Anyone of the PRPs who find a topic, activity or task interesting can respond to that request. Of course more than one PRP can be involved in all requests put forward. The request is sent to Susanne who in turn forwards it to the PRP group with appropriate information. The PRP group can also suggest things that should be discussed and/or explored within the project. The patient engagement expert coordinates and documents all activities and tasks that involve PRPs. Follow up on this new organization will be done on a regular basis.
To optimize the PRP involvement in RTCure, the PRP should be introduced, educated and involved in the work in an appropriate way. The person who put forward the request for PRP involvement is also responsible for keeping the PRP updated and included in the related work, with assistance from the patient engagement expert. It is also important that all parties are realistic and open about how the PRP can contribute to the tasks and deliverables of the respective request. Regular communication and feedback to the PRP is essential. As an example, the PRP should always be invited to related meetings, as well as to the annual meetings.
Currently there are nine PRPs in RTCure, both men and women in different ages and from five different countries.
