Table 3 First person reports of patient and researcher outcomes when engaging patients in health research

• Patient developed own voice and agenda; patient was more prepared for broader collaboration with other stakeholder groups [21, 40]

• Patients felt empowered, valued, and gained confidence and life skills [10, 28, 40]

• Researcher and patient developed improved trust [55]

• Improvement in information on all aspects of disease and treatment, involving patients in decision-making, organisation of care and the burden of neuropathy; setting [33, 55]

• Improvement in quality of care in context of research priority setting [33]

• Increased enrolment in studies and decreased attrition; improved data collection tools; improved dissemination of study findings and mobilisation of findings [15, 36, 50, 70]

• Greater understanding and insight into research area; rapport with community built [40, 55]

• Better alignment of research objectives through priority-setting activities [10, 33, 38, 71, 72]

• Improved research effectiveness [15, 55]

• Improved opportunity to appraise and evaluate engagement opportunities in research [55]