A research approach for co‐designing education with healthcare consumers

Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.

Uncertainty tolerance (UT) is an important, well-studied phenomenon in health care and many other important domains of life, yet its conceptualization and measurement by researchers in various disciplines have varied substantially and its essential nature remains unclear.

Background Current research suggests that while patients are becoming more engaged across the health delivery spectrum, this involvement occurs most often at the pre-preparation stage to identify ‘high-level’ priorities in health ecosystem priority setting, and at the preparation phase for health research. Objective The purpose of this systematic rapid review of the literature is to describe the evidence that does exist in relation to patient and public engagement priority setting in both health ecosystem and health research. Data sources HealthStar (via OVID); CINAHL; Proquest Databases; and Scholar’s Portal. Study eligibility criteria i) published in English; ii) published within the timeframe of 2007—Current (10 years) unless the report/article was formative in synthesizing key considerations of patient engagement in health ecosystem and health research priority setting; iii) conducted in Canada, the US, Europe, UK, Australia/New Zealand, or Scandinavian countries. Study appraisal and synthesis i) Is the research valid, sound, and applicable?; ii) what outcomes can we potentially expect if we implement the findings from this research?; iii) will the target population (i.e., health researchers and practitioners) be able to use this research?. A summary of findings from each of the respective processes was synthesized to highlight key information that would support decision-making for researchers when determining the best priority setting process to apply for their specific patient-oriented research. Results Seventy articles from the UK, US, Canada, Netherlands and Australia were selected for review. Results were organized into two tiers of public and patient engagement in prioritization: Tier 1—Deliberative and Tier 2—Consultative. Highly structured patient and public engagement planning activities include the James Lind Alliance Priority Setting Partnerships (UK), Dialogue Method (Netherlands), Global Evidence Mapping (Australia), and the Deep Inclusion Method/CHoosing All Together (US). Limitations The critical study limitations include challenges in comprehensively identifying the patient engagement literature for review, bias in article selection due to the identified scope, missed information due to a more limited use of exhaustive search strategies (e.g., in-depth hand searching), and the heterogeneity of reported study findings. Conclusion The four public and patient engagement priority setting processes identified were successful in setting priorities that are inclusive and objectively based, specific to the priorities of stakeholders engaged in the process. The processes were robust, strategic and aimed to promote equity in patient voices. Key limitations identified a lack of evaluation data on the success and extent in which patients were engaged. Issues pertaining to feasibility of stakeholder engagement, coordination, communication and limited resources were also considered.