Table 6.

Summary of benefits, costs and challenges per stakeholder group

Individuals and organizations	Benefits	Costs and challenges
Patient partners	Empowerment8, 19, 20, 29, 30, 31, 55, 85, 86 Enhanced well‐being29, 30, 87 Learning about research and gaining research and transferable skills20, 24, 29, 55, 97 Learning about own condition and treatment options54, 79 Enjoyment and satisfaction22, 29, 55, 87 Supportive, meaningful relationships29, 31, 79 Possible remuneration8, 54 Future prospects29, 30, 79, 87	Confusion due to lack of clarity about roles and procedures67, 79 Disappointment and frustration due to mismatched expectations20, 27 Stress due to lack of knowledge and confidence and a burden of responsibility24, 79 Overburdened5, 29, 55, 79 Investment of time and possibly own resources4, 24, 67, 79, 88 Possible reduction of welfare payments24
Society	Hope and trust in research/ers29, 67, 79 Funding and prioritization of research relevant to the community3 Potentially more, relevant drugs recommended for reimbursement74 Increased awareness of and advocacy for condition and associated research67, 79	Uncover or create conflict and power struggles in the community79 More time and resources67, 79, 85 Difficulty representing vulnerable/hard‐to‐reach groups67, 79
Research participants	Accessible information on all aspects of disease and treatment24, 55 More positive experience of research participation2, 55, 80
Researchers	Learning about patients’ view of condition and patient engagement's effects on research5, 8, 24, 26, 28, 29, 30 Enhanced knowledge and skills8, 28, 55, 79 Fresh perspective on what research can achieve19, 20, 22, 85 Enjoyment and satisfaction29 Career benefits29, 67	Methodological concerns and costs20, 32, 59 Stress due to new ways of working with patients and advocacy groups and associated power struggles4, 20, 32, 55, 67, 79 More resource‐intensive research process19, 55, 67, 79, 86, 87, 89, 90
Research institutes	Increased research impact24 Enhanced reputation24	Diversion of research funds to patient engagement (opportunity cost in terms of funded researcher time, etc)24 IT and other support infrastructures 24
Research funders	More relevant funding decisions24 Increased transparency and accountability55, 67	Possible challenge to balance scientific integrity and relevant research55
Industry	More cost‐effective R&D2, 85, 91, 92, 93 More regulatory success2 Enhanced reputation2, 31 Better patient concordance with treatment93, 94 Enhanced knowledge94	More resource‐intensive R&D20
Regulators and health technology assessment bodies	Better understanding of real‐life context of products71 More efficient, relevant regulatory decisions95 Increased transparency and accountability73, 74 Mutual respect between regulators and consumers73	Increased uncertainty in policy‐making due to varied views67
Others (decision makers and health‐care providers)	More useful evidence for clinical and health policy decision making30	Uncertainty about how to take the study recommendations forward due to complexities of conflicting clinical and health system goals between clinicians, researchers, and users55