Table 3 Patient engagement roles
Role | Description | Impact, effort, pros, cons |
|---|---|---|
Project coordinator | Patient organization leads and coordinates the whole project | Impact: very high Effort level: very high + Most influential role, e.g., patient-led research project – Highest workload, skills, experience and commitment required Example: European Patients’ Forum in EUPATI, https://www.imi.europa.eu/projects-results/project-factsheets/eupati |
Steering committee member | Patient organization / advocate is member of the governing committee of the project—and is funded for the work delivered | Impact: very high Effort level: very high + Patients are part of all relevant strategic decisions High workload, skills, experience and commitment required Not always funded for the work delivered Example: ART CC, HIV cohort collaborations, http://www.bristol.ac.uk/art-cc/ |
Work package leader | Patient organization / patient advocate coordinates a specific work package in the project | Impact: high Effort level: high + Patients with responsibility to coordinate and deliver defined elements of the project e.g., a work package on patient engagement, needs assessment, external communication + Patients organizations (sometimes) funded for the work delivered – High workload, skills, experience and commitment required Example: LeukaNET in the IMI HARMONY Big Data project, https://www.harmony-alliance.eu/patient-cluster, or Myeloma Patients Europe in SISAQOL-IMI, https://event.eortc.org/sisaqol/ |
Research project member | Patient organization/patient expert is a full member of the research project | Impact: medium Effort, skills, experience level: medium + Full participant of the overall project team + Patient organizations (sometimes) funded for the work delivered – Limited influence on decisions, usually only through project meetings of work packages and annual assembly Example: Association Française du Gougerot Sjögren – AFGS in H2020 NECESSITY, https://www.necessity-h2020.eu/patient-involvement/ |
Patient engagement hub | Patient organization/patient expert is a full research project member, coordinating contribution from other patient organizations outside of the project team, e.g., indication specific | Impact: high Effort, skills, experience level: high + Full participant of the overall project team + Patient organizations funded for the work delivered + /– Does the administration and coordination workload for the wider patient community Example: LeukaNET in the IMI HARMONY Big Data project, https://www.harmony-alliance.eu/patient-cluster, or Myeloma Patients Europe in SISAQOL-IMI, https://event.eortc.org/sisaqol/ |
Associated project partner | Patient organization has a partnership agreement with the research project | Impact: low Effort, skills, experience level: medium + Patients may prefer as it may take less time + Easier to combine with other activities – Patient organization usually not funded for the contributions and work – Usually not much influence on decisions of the project – Usually no compensation for time, so little time investment possible Example: Patient Advisory Group of four patient organizations in IMI PREFER, coordinated by ECPC, https://www.imi-prefer.eu/stakeholders/patients/ |
Advisor / advisory board member | Membership of ethics committee, scientific advisory board, project advisory board, data safety monitoring board | Impact: low Effort, skills, experience level: low + Patients’ expertise provided into specific committees, but no participation in active work – Usually no compensation for time, so little time investment possible – Advice only – usually little influence on decisions and no accountability whether advice is actually used and implemented by project Example: Patient Advisory Group of four patient organizations in IMI PREFER, coordinated by ECPC, https://www.imi-prefer.eu/stakeholders/patients/ |