Table 3 Summary of included studies
From: Understanding patient engagement in health system decision-making: a co-designed scoping review
Theme | Author/year/location | Study design | Purpose of the study | Description of investment/no. of participants | Outcomes |
|---|---|---|---|---|---|
Forums represent examples of individuals receiving some form of training | Marlett et al. [32] Canada | Qualitative | To describe a new role for patients who participate in a qualitative research training program | Patients participated in training so they could conduct patient experience research using qualitative methods. Twenty-one individuals participated in the forum | Training program increased the confidence and competence of patients to conduct research |
Oliver et al. [33] UK | Qualitative | To describe the methods used to involve patients in the Health Technology Assessment (HTA) process | Training opportunities were informally injected throughout the entire process. Including a 1-day “induction day” to kick off the project. No participant numbers were reported | None reported | |
McElfish et al. [34] USA | Qualitative | To describe the process of developing patient-centered outcomes research with patients and community members | Informal training opportunities occurred throughout the project during the over 80 stakeholder meetings. Thirty-one community stakeholders participated in the forums | None reported | |
Davis et al. [35] Australia | Quantitative non-randomized | To assess the effectiveness of an advocacy training program | A 3-day advocacy training course for breast cancer consumers. Fifty-one individuals participated in the forum | Patients receiving training had significantly increased involvement in advocacy activities | |
aShelton et al. [36] USA | Mixed methods | To compare the training-related experiences (knowledge, self-efficacy, satisfaction with training, and completion of role play-based training) of professional and lay trainers | An intensive training program provided over 19 h completed over the course of 3 months. Five individuals participated in the forum | None reported | |
Patient instructors are examples of patient and family members provide their own personal experiences in situations to improve medical training | Jha et al. [37] UK | RCT | To measure the impact of patient narratives as a method to train junior doctors in patient safety | Two learning sessions, collaboratively developed with patients. The sessions had a 15–18-min patient narrative and facilitated discussion between patients and trainees. Six patients and 5 carers participated | None reported |
Shah et al. [38] UK | Qualitative | To explore the patient experience of teaching undergraduate pharmacy students | Patients participated in education programs for pharmacy students. Thirty patients participated | Sharing experiences provided participants with a sense of worth and increased their overall confidence and self-esteem | |
aDonaghty et al. [39] UK | Qualitative | To explore the perceptions of patient-led education for post-graduate trainees | Patients, with formal experience as teachers, designed a 1.5-h curriculum over a 1-month period. Three patients participated | None reported | |
Workshops are examples of how patients are learning skills to be able to participate in other tasks. | Hyde et al. [40] UK | Qualitative | To investigate the process and impact of involving patients in a systematic review | Patients participated in 3 information workshops on protocol design, interpreting results, and dissemination. Five patients participated | None reported |
Saunders et al. [41] Australia | Qualitative | To provide information on the research needs of cancer patients and to describe the priority setting process | Patients participated in a general information workshop. Thirty-two individuals participated | None reported | |
Andejeski et al. [42] USA | Quantitative non-randomized | To evaluate the impact of having cancer survivors with advocacy experience participate as voting members of scientific review panels | Patient panel members received information and a presentation to orient them to the scientific review process. Eighty-five consumers participated | None reported | |
aTischler et al. [43] UK | Mixed methods | To establish a definition of patient-centeredness using abstracts from schizophrenia research and to explore the experiences of both psychiatrists and service users taking part in the research | Patients participated in 3 half-day workshops to define patient-centered care. Thirteen individuals participated | None reported | |
aLanger et al. [44] UK | Mixed methods | To evaluate the patient TIPS collaborative learning model to patient and family and clinicians | Two exploration style focus groups, 3 orientation sessions, and 3 workshops (4 h) focusing on medical error. Nine family members completed the workshops | None reported | |
Co-designs are examples of involving patients in co-designing program improvements | Boaz et al. [45] UK | Qualitative | To explore the different roles adopted by patients after participation in quality improvement interventions | Small co-designed groups work on implementing improvements over 3–4 months | Three of 63 patients continued their involvement after project completion |
Boyd et al. [46] New Zealand | Qualitative | To describe how co-design can be used to improve patient experience with healthcare services | Embedded throughout the entire co-design process including surveys and workshops | None reported |