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Table 4 Issues associated with partnering with patients in the Execution phase of research

From: Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Themes Issues identified in literature Recommendations identified in the literature
Research step: Study design & procedures
Patients exclusion from research stage • Due to the lack of patients’ knowledge about research methodologies, their implication in the study design phase may rise concerns about the integrity of scientific methods [28]. • The study design should express a balance between the scientific rigours of researchers and the patient’s suggestions based on their experiential knowledge [27].
• Some researchers believe that patient partners should not assess the methodological aspects of the study. They believe that the scientific approach is incompatible with the patient approach [28]. • Teams should provide significant training requirement that prepare patients to become research partners [28].
• An effective partnership with patient in the study design phase require that all research materials can be understandable by patient [28].
Research step: Study recruitment
Challenges in participants recruitment • Patient partners may be motivated by the desire to provide benefits to community members, thus they may target as participants individuals whom they think are in the need or deserving services [25].
• When community leaders are partners in research, other community members may feel pressured to enroll as participants in the research [29].
• It is the role of researchers to ensure that all participants are voluntary recruited to participate in research, and that they are not being made vulnerable because of their refusal to participate [29].
Research step: Data collection
Potential breach of confidentiality • Patient partners engagement in research might compromise data confidentiality [25, 30]. • Research teams or research institution should provide ethical research education to patient partners [25].
Research step: Data analysis
Potential breach of confidentiality • Research process could expose patient partners to incidental findings on other patients’ health [25, 31].