Patients as research partners in preference studies: learnings from IMI-PREFER

Table 3 Facilitating factors for involving patients as research partners by PREFER case study

	COPD	Gene therapy	Hemophilia	Multiple myeloma	NMD^a	NSCLC^a	RA	RA preventive treatment^a
Facilitators^a
CONTRIBUTE	X			X	X
EXPERIENCE	X	X	X	X	X			X
MECHANISM	X	X	X	X	X		X
MEETING	X			X		X	X
OWNER	X			X
PAY	X		X		X		X
PURPOSE	X	X	X	X	X	X	X	X
RELATION	X		X	X	X	X		X
REPRESENT	X	X	X	X	X		X	X
RECRUIT	X		X	X	X	X	X
TIME	X			X				X
SUPPORT	X			X	X		X
URGENT		X		X			X

Definition of Enabling Factors' Codes
CONTRIBUTE: Patient contributions as PRPs were encouraged/recognized by the research team
EXPERIENCE: PRP had participated in prior research studies
MECHANISM: The research project work was organized in such a way as to ensure that the patient's voice was incorporated
MEETING: Research team meetings were scheduled to accommodate PRPs
OWNER: There was a clear sense of 'co-ownership' between PRPs and research team members in terms of the research agenda
PAY: Patients as Research Partners (PRPs) received some type of financial compensation for their work. PURPOSE: Clearly stated purpose for involving Patients as Research Partners
RELATION: Presence of existing (informal) relationships were in place between research team members and the patients who served a Patient Research Partners (PRP)
REPRESENT: There was more than 1 Patient as Research Partner (PRP) involved in the study
RECRUIT: Patients as Research Partners (PRPs) were recruited via networking with existing patient stakeholder groups
SUPPORT: Principal investigator of study ensured that PRPs received information, training to support them in their role
TIME: There was sufficient lead time to involve/recruit patients as PRPs
URGENT: There was a sense of urgency about the importance of doing the research (i.e., with patient involvement as research partners)
^aPREFER core case study

ISSN: 2056-7529