Table 3 Issues associated with partnering with patients in the Preparatory phase of research

Lack of resources available to support partnership in the early phase of research

• Researchers may lack financial resources to support full partnership with patients in the early phase of research, such as when determining the research question, before they obtain funding [19,20,21,22].

• New funding mechanisms that would recognise the particularities of patient engagement in the phase of research questions development should be created [19].

• Future studies should consider including a full analysis of the resources required for partnering with patients in their research project [20].

• Researcher might not have enough time to engage in full patient partnership at this early stage of research [19, 21].

• In order to cope with this lack of time and resources, researchers can turn to social media for crowdsourcing, or to investigate community interest for different avenues of research [23].

Disagreement on priorities

• Confrontation may arise between researchers and patients when prioritizing research questions or selecting outcomes [24,25,26].

• Research partners should recognise the difference of objectives between researchers and patients as an opportunity to converge them into synergistic goals [24].

• Research teams should make sure the research question is relevant to all research partners equally, including researchers and patient [27].

• Different patients may want different research questions to be answered and different outcomes to be measured [11].

• Researchers might select patient partners who are connected with a greater patient community (e.g., through advocacy organizations) and who are able to discuss broad concerns of interest for diverse patients, not just for themselves or their special interests [11].

Tokenism

• Challenges for researchers arise when they are faced with a predetermined research topic by funding organizations, while at the same time they are required to implicate patients in the process of research question prioritization. This situation may lead to patient engagement tokenism and inhibit effective implication of patient in the earlier step of research [26].

• Engaging patient in the early stage of the research question development is still uncommon. The participation of patient in this stage of research is commonly limited to consultation rather than full partnership [19].

• Researchers believe that patients aren’t knowledgeable enough to be able to choose research priorities [28].

• Researcher believe that patients lack the expertise to be able to gain global understanding of the whole study [21].

• Partners may face long periods of inactivity due to the time required for review after protocol is submitted. Partners who are not appropriately informed about the delays may lose motivation and experience frustration [22].

• Researchers could engage with patients only after funding is secured [22].

Patients’ conflict of interest

• During the step of topic solicitation and research question development, challenges may occur when patients focus on their own current health issues and interest while discussing research priorities with researchers [26].

• Patients can anticipate personal benefits as incentive for participating in research, or research ethics committee, which might make them overlook risks for other participants and themselves in the ethical evaluation of the project, in hope of these benefits [21].

• Researchers can encourage patient-research-partners to adopt a broad perspective when expressing their opinion [11, 19, 24, 27].