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

Table 2 Barriers for involving patients as research partners by PREFER case study

	COPD	Gene therapy	Hemophilia	MM	NMD^a	NSCLC^a	RA	RA preventive treatment^a
Barriers*
CONFIDENCE					X
CONTENT	X				X
GEOGRAPHIC	X
IMPRECISE						X
PANDEMIC		X		X		X		X
PLAIN LANGUAGE					X
RECRUITPAG	X		X
SUPPORT		X	X	X	X	X	X	X
TIME			X			X	X
UNCERTAIN				X	X	X
OTHER	(1) In one of the participating countries, the patient advocacy group had no previous experience of this kind and hence their input to the project was limited (2) The language barrier was also a complicating factor in one country (Japan) requiring an intermediary in the interaction	"…We had a big group of patient research partners but perhaps not fully representative (e.g. only 1 male and no PRP from one of the participating countries)"

Definition of Barrier Codes
CONFIDENCE: Patient partners felt intimidated or pushed out sometimes (either by discussion topics or other team members)
CONTENT: Patient Research Partners (PRPs) lacked sufficient content knowledge to contribute fully
GEOGRAPHIC: Geographical limitations for patients to participate as Patient Research Partners (PRPs)
IMPRECISE: The role of the PRP was not clearly defined/no job description provided and no rules of engagement were presented
PANDEMIC: COVID-19 pandemic interfered with study execution and/or PRPs ability to contribute to study
PLAIN LANGUAGE: Team used technical/medical research terminology as opposed to a common 'plain language'
RECRUITPAG: Having to rely on the Patient Advocacy (PAG) for recruitment purposes—i.e., this caused delays in recruitment; PAGs were not always responsive; in some instances, they unable to recruit a sufficient number of patients
SUPPORT: Inadequate resources were allocated (e.g., funding to pay for PRPs; formal on-boarding; training; other sources of support)
TIME: Insufficient time to get Patients as Research Partners fully involved- focus was on getting the research project up and running
UNCERTAIN: There was uncertainty [i.e., within the study team] regarding how to practically operationalize the role of patient as Research Partner (PRP)
OTHER: Any other factor that served to hinder the study team from involving patients as research partners
^aPREFER core case

ISSN: 2056-7529