Over the past ten years, there have been increasing calls for patient and public involvement in health-related research. The impetus for this shift is twofold; an ideological shift towards more equitable and less hierarchical methods of knowledge development, and an effort to increase the usability and relevance of knowledge as evidenced by improved outcomes in clinical practice. Patient engagement includes a spectrum ranging from informing patients to giving complete decision-making autonomy; wherein, patient is an umbrella term that includes individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite increased use of patient engagement methods in health research, evaluation has lagged, resulting in a meagre evidence base for the processes and outcomes of patient engagement in research. The current knowledge gap makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved upon. The context of this study centers on pediatric functional constipation; a very common condition worldwide, which causes significant problems for children and families. Since parents play a pivotal role in the effective treatment of pediatric functional constipation, they are an optimal group to engage with to collaboratively improve the resources and support available for them.
This study aims to: 1) use patient-engagement methods to establish a research collaboration with parents to co-create a digital Knowledge Translation (KT) tool for parents caring for a child with functional constipation (FC), 2) formally evaluate the patient engagement processes within this project to build the science of patient engagement in research.
Members of the Parent Collaborator Group (PCG) will be recruited from previous participants who expressed interest in digital Knowledge Translation (KT) tool development. Target size of the PCG is between four and twelve members. The PCG will collaborate with the research team to co-create a digital KT tool to address patients’ support and information needs when caring for a child with functional constipation. Upon tool completion, evaluation of the PCG will use a multi-method design with both quantitative and qualitative components. Data will be digitally and anonymously collected from all members of the PCG, using the validated Public and Patient Engagement Evaluation Tool (PPEET) – patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used in relation to the themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings from the quantitative and qualitative data will be integrated in the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting each element described by the Good Reporting of A Mixed Methods Study (GRAMMS) criteria.
Recruitment for the PCG is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital KT tool. Results of this study are expected to be published by the end of 2020.
This study will provide valuable information about parents’ experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research.