Table 3 Co-production Components
From: Co-producing research on psychosis: a scoping review on barriers, facilitators and outcomes
References | Terminology | Methods | Barriers | Facilitators | Outcomes/and Conclusions |
|---|---|---|---|---|---|
Identifies as “co-production”, “co-design” or “co-creation” | |||||
Larkin et al. [31] | Evidence based Co-Design (EBCD) | Provided feedback to reach consensus during co-design, film shown and participants co-designed service improvements | Barriers: Censoring and safeguarding, stigma, high turnover, “lack of continuity in high-level support” | Facilitators: Feedback groups, formative qualitative research phase, “mechanisms to encourage ownership of the project, as well as strong high-level support, are essential to guarantee the implementation and sustainability of improvements” | “All feedback groups reached consensus fairly easily and recognized the typical difficulties faced by young service-users being hospitalized” “Attendance at the steering group was consistent among a small group of committed staff, but there was frustration at the lack of time and organizational support available to follow through the plans” Authors conlcude “ it necessary to develop and adapt the method to suit the vulnerable populations and complex services we were working within, but we feel able to conclude that it is feasible to use EBCD in a mental health context, provided careful attention is given to ethical and safety issues” |
Sin et al. [28] | Coproduction, Participatory research methodologies | Co-design “workshops with an Expert Advisory Group” and “iterative consultations with carers” | Barriers: “Unintended pressure” | Facilitators: “Testimonials from other carers” and photos of EAG [Expert Advisory Group] working together”, “nondigital design tools” “encouraged creative design atmosphere”, “focus group consultation, and data analysis were performed in parallel with one another” | Authors commented that a significant outcome was the “documentation of a rigorous and innovative build process” |
Terp et al. [30] | Co-design | Co-design workshops to “establish participation” | None Identified | Facilitators: Use of metaphors, enhanced communication “sense of community”: a community of practice inspired participation and fostered engagement, setting, support active participation (e.g., using storyboards) | Initial phase of design development created “ownership and pride” Advantage of experienced participant-facilitated “construction and maintenance of a secure and informal environment that supports mutual engagement” |
Kristensen et al. [26] | Iterative co-creation process | Patient Peer Board “operated through workshops, on their own, in pairs and in groups to reach consensus recommendations.” Patient Peer Board comment on the “data collection”, “patient’s information requirements when answering questions related to PROMs”, “graphical display of PROMs”, and “graphical display of PRO results for self-management” | None Identified | Facilitators: Iterative co-creation and consensus process facilitated conflict resolution. Organization of study allowed patients to be “directly and indirectly involved at all project stages and voice their opinions” “Direct patient involvement is likely to build trust” | “Task of the PPB was to voice the patients’ opinions” “Emphasis on direct patient involvement is likely to build trust that the PRO-data will not be misused” Patient Peer Board successfully “emphasized concrete, unambiguous easily understandable information, and procedures for data collection and display of results” |
Realpe et al. [32] | Co-design | Service users with experience of mental health services were invited to partake in a five-stage interactive co-design process Service users’ suggestions were used “to advance to the next stage.” Service users partook in different activities e.g. workshops, video screenings and provided feedback on the design and delivery on the online intervention platform | Barrier: Feedback groups “required considerable time and effort” and were impacted by lack of continuity “Lack of opportunities and support systems to facilitate collaboration between young people and researchers in developing research together” Access to technology | Facilitators: Clarity about “security of data storage”, as “this may be of particular issue for people with a history of paranoia/psychosis.” | “Participants in this study challenged researchers' understanding of what young people need during recovery” Findings contribute to current efforts to develop environments that reflect lived experience “The process of co- design led to the development of a specific approach and protocol to be tested in a proof-of-concept trial with people experiencing a first episode of psychosis” " Service users supported novel methods of engagement of people who may be suffering in isolation and found virtual worlds to delivery therapy acceptable” “The co-design process permitted a feedback loop that continues to inform design and solve problems as they emerge in the pilot study” |
Identifies as “participatory” | |||||
Csipke et al. [34] | Participatory methodology with service user researcher | Follows principles of ‘‘SURE” model Service user researchers involved throughout process; “one service user researcher had experience of the service under investigation” | None Identified | Facilitators: Use of a camera makes participants feel involved in the research, mitigates “language barriers”, provides “in-depth understanding of service user experience” | Development of patient generated outcome measures with “user generated tools [..] may enable an in-depth assessment of the experience of in-patient care for service users and frontline staff alike” |
Schneider, et al. [33] | Participatory research | Service users “chose the topic”, “method of data collection”, resulting in a “set of recommendations” and influenced dissemination of findings | Barriers: Need to account for a “range of abilities” | Facilitators: Multiple forms of result dissemination (e.g., theater presentation and academic journal article), “good communication” | “This research project empowered one small group of very marginalized people with schizophrenia to speak directly to psychiatrists and other mental health professionals about their treatment experiences and through this is contributing to change in how others with mental illnesses are treated by their health care professionals” |
Higgins et al. [27] | Participatory action research | Coordinated by a steering group, “core values were agreed by the group at the onset”, discussions held with service users and family members to gain their views on the program Designed education program and co-facilitated delivery of the education program | Barriers: Absence of literature on co-facilitation | Facilitators: Clinicians invited to discussions in order to generate ‘buy-in’, additional “consultation meeting held with multidisciplinary teams” | “Flexibility of the interview would shed light on unexplored or previously unexamined perspectives, such as the challenges of peer-clinician co-facilitation, the value of peer involvement and of programme handbooks” |
Pelletier et al. [35] | Participatory action research | “Equitable participation” between non-academic members and co-research team “Close collaboration and consultation between the Advisory Board and Co-Research Team was undertaken at all key stages of development” | Barriers: For effective implementation, “perceptions of incompetence, of dangerousness, and of permanent impairment that health care providers can have towards patients” must be challenged | Facilitators: “Active and visible participation of patients in small group sessions with health care providers” helped “generate a more positive image and to strengthen GPs confidence in engaging” with patients “Small group learning” enables “participants to develop problem-solving, interpersonal, presentation and communication skills that are difficult to develop in isolation and require feedback and interaction with other individuals.” | “The patient-centeredness of this participatory research was characterised by an enhanced level of patient commitment to this R&D process of the IGMA and its use” “Difficult communication and social distance have been identified in the literature as bar- riers to equitable access to primary care providers and this access can be improved through the use of a tool like the IGMA and the interactivity and collective social support that its use generates among small groups of patients” |
Susanti et al. [29] | Patient and public involvement | Consultation events with local collaborators, who informed data collection methods Advisory group “consulted on all project components.” | Barriers: Negative past experiences, “lack of understanding”, stigma, resources and caregiving burden | Facilitators: “Sense of purpose” and "reintegrate into the community”, range of involvement activities | “Participants acknowledged a number of benefits of PPI including sharing burden, sharing skills and experiences, improving confidence, and combating stigma” |
Tischler et al. [36] | Participatory research | Contributed to design, “with support from the study team” | Barriers: “Power differential that exists between researchers and service user”, service users’ “lack of research experience”, jargon | Facilitators: Support enables sharing of “views without feeling intimidated or patronized” | “Emphasizes the importance of the process of research in achieving genuine service user involvement. It highlights the potential benefits of collaborative projects for both health professionals and service users despite the need for substantial resources and commitment to undertake such research” |
Identifies as “service user researchers” | |||||
Morant et al. [39] | Service user researchers | Interviews developed in “collaboration with an established mental health service users group South Essex Service Research Group” “Integrated service user perspectives into early stages of the analysis process” | None Identified | Facilitators: Disclosures by service user researchers “enhanced rapport and openness” | “In depth exploration of service users views of their involvement in decision-making about antipsychotic medication. As well as revealing the impacts of taking antipsychotics, it highlights how experiences of medication decision-making are characterised for many by passivity, perceived limitations of choice, low levels of involvement, and a sense of powerlessness” |
Neil et al. [37] | Service user researchers | Supervised by qualified psychologist. Service users consulted with the Steering Committee (service users) throughout the research process | Barriers: Safeguarding Despite efforts to avoid “tokenistic involvement”, service users excluded from statistical analysis | Facilitators: Service users advised questionnaire; wording designed to “reduce the potential to cause distress” | “User with experience of psychosis, and some with experience of completing questionnaires. By working together and sharing our areas of expertise, for example, research knowledge and expertise by experience, we produced a recovery measure, which is meaningful and valid.” |
Pitt et al. [38] | User-led research | “Research supervision provided by clinical psychologists” Service user researchers “met regularly with a steering committee” (service users) and “conducted all stages of the research” | Barriers: Setting, “independent representative”, “sufficient time”, respecting opinions, high “turnovers of staff” and meaningful therapeutic relationships | Facilitators: Service user researchers’ personal experience, empowerment, “broader ‘user perspective’” mitigates “personal bias from the primary investigators” | “Importance of promoting and encouraging active participation by service users and the need for strengthening key relationships with professionals who are able to engage in active dialogue with the service user” |
Identifies as “Experts by Experience” | |||||
Roelandt et al. [40] | Peer workers and experts by experience | “Users and carers were involved in all the stages of the project”; “participated in the development of the protocol, in the review of the design and the materials, in pretesting, and in the interpretation of the results.” Interviewers included “peer workers and experts by experience.” | Barriers: Disclosure Results and findings “may not be applicable to persons not informed of their diagnosis or outside of the health care system" | None Identified | “Revealed a gap between official medical language and users’ and carers’ language.” Experiential knowledge “could be a source of relevant information to reduce the gap between chosen terms and underlying concepts” |