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Table 3 Areas where inappropriate to engage

From: Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

Themes Representative quote
Basic and biomedical research “I’m not sure how basic/bench sciences are incorporating these concepts, but I think there is merit to engage patients in those areas also, as it will help with the overall populations education and knowledge about health treatments (especially for example in immunization knowledge)”
“Some basic science questions they are not equipped to provide guidance on”
“Basic sciences where extensive training and knowledge is required”
Vulnerable populations “If appropriately developed, there is no area that could not be appropriately considered as a research focus. Children and the elderly comprise a considerable impediment due to informed consent issues.”
“Extra caution must be taken with vulnerable populations”
Harm vs. benefit “Research that involves potential risk for biased input in developing and disseminating the research and outputs e.g., due to fear, popular opinion, etc.”
“… where there will be more harm than benefit – case by case, not necessarily any particular area of research”
Level of involvement “I’m sure there are, but this will depend on the level of engagement”
“I’m not sure that it is inappropriate ever to engage patients if there is sufficient time taken for adequate education about the research methods and process - the expert role is to know and outline the pros and cons of research decisions throughout the process so the engaged team can decide; knowledge is power and will help our society as a whole.”
Research phase “I don’t think having patients set the agenda is always appropriate. The skills needed for good research is with researchers, and spending money on whimsical subjects with no clear outcome is wasteful.”
“I’m not sure it’s always appropriate to include patients in research design and analysis phases”
“… should occur at arms’ length from the research. They are not formally trained in research methodology. While their insight may be valid at onset (design) or interpretation of findings, I would hesitate to involve them beyond that.”