Consumer and community co‐development in knowledge creation
L Gustafsson, HM Bourke‐Taylor, G Pepin
The involvement of consumers and community members in research is a priority area for research published in the Australian Occupational Therapy Journal . The journal views the meaningful contribution of people (consumers) and communities with lived experience and unique perspectives as a core element in the creation and translation of knowledge into practice that is equally as important as the rigour of the studies conducted. The National Health and Medical Research Council of Australia assert that ‘health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement’ (NHMRC, 2016, p. 8).
The research process from development of questions, to design and implementation and then analysis and translation to appropriate contexts are all strengthened with consumer involvement and engagement. Although it is increasingly common for consumer and community members to be involved in agenda setting for research and to some extent protocol development, it is less common for that involvement to continue through the conduct of the research, analysis and knowledge translation processes (Domencq et al. , 2014). Developing sustainable and meaningful processes for engaging with consumers and the wider community at all steps of the research process requires a high level of commitment and skill from all stakeholders. The translation of research findings to practice can be a slow and arduous process relying on professionals and others to identify, retrieve and apply evidence and knowledge. Embedding consumer perspectives at all points in the research process not only improves relevance of that research, it also empowers consumers to utilise that knowledge and share with their own communities. Hence, the current research to practice gap may be made less chiasmic as a result of consumer involvement in all steps of the research process (Buffel, 2018). Furthermore, in an era in Australia of unprecedented support for people to engage in decisions about their own health, disability, aged care and other supports, the demand for occupational therapists to collaborate to enable consumer involvement, choice and control is mandatory in research, practice and education.
A paper previously published in the Australian Occupational Therapy Journal described the evaluation of training materials to support the participation of mental health consumers in research (Hancock, Bundy, Tamsett, & McMahon, 2012). Internationally, there are many great examples for how to ensure the validity of your research by the inclusion of consumer researchers throughout the process, however, notably the term patient is often used. The Strategy for Patient‐Oriented Research has emerged from Canada and provides a key vision and capacity development framework that supports the engagement of people with lived experience as partners in the research process and ensures a study focus on patient‐identified priorities (Canadian Institute of Health Research, 2015). The Patient and Community Engagement Research (PaCER) unit out of the University of Calgary trains patient and community researchers in qualitative research methods across a 12‐month period including a project internship. As an example, Gill et al. (2016) employed four family members who completed the PaCER program as researchers to explore the experience of patients and family members in the intensive care unit and reported that it was a novel and feasible research approach. Buffel (2018) identified the importance of developing training activities for older adults and researchers, to address barriers to co‐production such as a lack of competence among researchers to create effective partnership with consumers, stereotypes associated with consumers and assumptions about what they can and cannot do, and finally, consumer's hesitation to meaningfully engage in research and become co‐researchers.
Consumer involvement requires a rigorous protocol for professional engagement and contribution, as well as a risk management strategy to ensure meaningful and representative contribution. The authentic inclusion of consumer or community researchers challenges researchers and professionals who may have set their own agendas or responded to research targets and priority areas set by funding bodies in the past. Equally, consumer engagement is not always considered a strength to research with the ‘insider perspective’ a potential risk to research if there is no suspension of bias (Corbin Buckle & Dwyer, 2009). As a result, substantial attention to the area of consumer involvement must occur to avoid the pitfalls ranging from tokenistic consumer engagement through to complete agenda setting. Buffel (2018) developed a 7‐stage process to support co‐production in research with older adults that may be generalised to all areas of practice. The proposed stages provide clear guidelines to move beyond the usual tokenistic approach and co‐produce research meaningfully and authentically. Together, consumers and researchers go through these seven stages: co‐designing research objectives; co‐producing research materials; collecting data among peers; collaboratively analysing data; co‐producing and sharing findings; translating findings into practice; and evaluating impact in partnership (Buffel, 2018).
An aim of co‐produced research is to apply the philosophical and theoretical underpinnings of empowerment into practice (Durose, Beebeejaun, Rees, Richardson, & Richardson, 2012). Collaboration and involvement with consumers will be confronting on issues such as cultural differences in values and attitudes, appropriate language (i.e. labels such as ‘carer’ that may be assumed to be appropriate by professionals but rejected by families) and relative importance of issues (i.e. professionals aiming to investigate the efficacy of an occupational therapy intervention while consumers rate availability of skilled occupational therapists as a much a larger concern and real issue). Finding common and acceptable language, acknowledging and neutralising power issues and inclusive communication channels are some of the important areas for researchers, practitioners and educators to consider as the profession raises the bar on consumer involvement and collaboration in research. Co‐produced research has the potential to give meaning to results for those who will benefit the most from the generated evidence, facilitating its translation and dissemination in relevant contexts and environments. The Australian Occupational Therapy Journal is seeking to increase the visibility of how consumers and community members are included in the research that is published. Researchers are encouraged to consider how to increase co‐development and participation in all aspects of the research and to explicitly represent this within your submitted manuscripts.