Table 7 Results from the stakeholders’ consultation exercise

Preparatory phase

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New recommendation: Major funding agencies should provide training and information on patient partnership in research.

n/a

New issue: Lack of engagement due to prior negative experiences. Researcher may have had, or heard of, negative prior experiences and thus be reluctant to engage patients in the preparatory phase of his research project.

n/a

New issue: Overemphasis of certain research themes due to patients being engaged in research. Common conditions such as cancer or diabetes may be overemphasized in research, because of the prevalence and availability of patient partners.

n/a

New issue: Overemphasis of certain types of research. Involving patient partners might reduce the place of fundamental research in research programs because of an emphasis on obtaining results that can rapidly be transferred to care.

Execution phase

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New issue: Efficiency. Researchers may worry that implicating patient partners may alter the dynamics and thus the efficiency of research meetings.

n/a

Comment: An important avenue for research is on patients’ responsibility in the matter of research ethics and research integrity.

Translational phase

Issue: Patients are usually excluded from research results dissemination and communication activities.

New recommendation: Committee recommended to anticipate this issue by discussing the planned dissemination activity and the patient involvement in them early on.

n/a

Comment: Committee pointed out it would be useful to do more research on how patients see and prioritize research dissemination activities. They may help to improve research knowledge transfer to population.

Transversal issues

Issue: Patient partners may suffer from unstable health conditions, which can jeopardize their engagement in the research project

Comment: Committee pointed out that it may not always be possible to anticipate risk of patients relapsing or getting another health issue in the future. Inclusion criteria may be too narrow and discriminatory if one of the selection criteria is to only include patients in stable health conditions. Mitigation strategies or reasonable accommodations should instead be put in place if patients suffer from unstable conditions during the research project.

Recommendation: Selection of patient partners in stable health condition.

Issue: Patients may lose their “lay experience” after multiple previous patient engagement experiences.

New recommendation: Committee suggested that when patients represent a community, they can be encouraged to consult with their community regularly.

Issue: Representativity. Patients may not be representative of the larger patient’s population.

New recommendation: It was suggested that patients should indicate whether they speak for themselves or they represent a community when engaged in a research project.

Issue: Patient partners may have misconception of the benefits of their engagement in research (they might expect therapeutic benefits, or services).

New recommendation: Committee recommended research team discuss this issue earlier on in order to clear all misconceptions patients may have.

Issue: Communication issues between research partners

New comment: Committee felt that these communication issues are sometimes caused by the use of technical language or medical or health system jargon by researchers.

Issue: Conflict between patients and researchers may arise

Comment: Committee indicated that conflict may also happen when a patient partner is particularly vocal or particularly vindictive or demanding.