Opportunities for patient engagement in different phases of research
|
Research issue | Research phase | Method | Putative result |
| Identify knowledge gaps and clinical needs | Define research question | Direct contact with patients; Consultation of patient support groups | Define most urgent and most relevant research questions |
| Explore grant opportunities | Research funding | Collaborate with a patient organization; Mobilize ‘influencers’ among the patients | Apply for funding sources likely to fund your (rare disease) research |
| Review of study design and study procedures by patients | Design study | Collaborate with a patient organization; Test if the patient information folder is clear and if patients are willing to undergo the procedures | If patients approve study procedures and information, more patients are likely to participate |
| Update patients on the research progress and share novel insights | During the study | Meetings, newsletters | Help patients to better understand their disease; They can ask their physicians about novel treatment or diagnostic strategies |
| Receive feedback on study results | During the study | Meetings, questionnaires | Patients can drive the implementation of research findings into the clinic |
| Show results of research on a group level and brainstorm on future directions | Publication of results | Confer with private sponsors and patient organizations | Patients can help to prioritize the research agenda |