Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.

BACKGROUND: Persons with developmental disabilities (PWDD) face a number of individual, environmental and societal barriers when seeking employment. Integrated knowledge translation (IKT) involves ongoing and dynamic interactions between researchers and stakeholders for the purpose of engaging in mutually beneficial research to address these types of multi-faceted barriers. There is a knowledge gap in the IKT literature on effective stakeholder engagement strategies outside of the dissemination stage to inform policy. In this paper, we report on a number of engagement strategies employed over a 2-year period to engage a wide range of stakeholders in different stages of an IKT project that aimed to investigate the 'wicked' problem of employment for PWDD. METHOD: Our engagement plan included multiple linked strategies and was designed to ensure the meaningful engagement of, and knowledge co-production with, stakeholders. We held two participatory consensus-building stakeholder policy dialogue events to co-produce knowledge utilising the nominal group technique and the modified Delphi technique. A total of 31 and 49 stakeholders engaged in the first and second events, respectively, from six key stakeholder groups. Focused engagement strategies were employed to build on the stakeholder dialogues for knowledge mobilisation and included a focus group attended only by PWDD, a stakeholder workshop attended only by policy/decision-makers, a webinar attended by human resources professionals and employers, and a current affairs panel attended by the general public. RESULTS: Our findings suggest that the level of engagement for each stakeholder group varies depending on the goal and need of the project. Our stakeholder dialogue findings highlight the inherent challenges in co-framing and knowledge co-production through the meaningful engagement of multiple stakeholders who hold different ideas and interests. Focused outreach is needed to foster relationships and trust for meaningful engagement. CONCLUSIONS: In addition to providing guidance on how to implement adaptable meaningful engagement strategies, these findings contribute to discussions on how IKT projects are planned and funded. More studies to explore effective mechanisms for engaging a wide range of stakeholders in IKT research are needed. More evidence of successful engagement strategies employed by researchers to achieve meaningful knowledge co-production is also key to advancing the discipline.

Patient and public engagement in priority setting: A systematic rapid review of the literature.

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.

Correction to: Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.

It has been highlighted that the original manuscript [1] contains a typesetting error in the surname of Virginia Vandall-Walker. This was incorrectly captured as Virgnia Vandall-Walker in the original manuscript which has since been updated.

Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.

BACKGROUND: Over the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research. METHODS: An adaptation of the scoping review methodology originally described by Arksey and O'Malley and updated by Levac, Colquhoun and O'Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research. RESULTS: The total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking. CONCLUSION: Further increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient's role in research beyond 'subject' or 'participant', so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.

Identifying attributes of food literacy: a scoping review.

OBJECTIVE: An absence of food literacy measurement tools makes it challenging for nutrition practitioners to assess the impact of food literacy on healthy diets and to evaluate the outcomes of food literacy interventions. The objective of the present scoping review was to identify the attributes of food literacy. DESIGN: A scoping review of peer-reviewed and grey literature was conducted and attributes of food literacy identified. Subjects included in the search were high-risk groups. Eligible articles were limited to research from Canada, USA, the UK, Australia and New Zealand. RESULTS: The search identified nineteen peer-reviewed and thirty grey literature sources. Fifteen identified food literacy attributes were organized into five categories. Food and Nutrition Knowledge informs decisions about intake and distinguishing between 'healthy' and 'unhealthy' foods. Food Skills focuses on techniques of food purchasing, preparation, handling and storage. Self-Efficacy and Confidence represent one's capacity to perform successfully in specific situations. Ecologic refers to beyond self and the interaction of macro- and microsystems with food decisions and behaviours. Food Decisions reflects the application of knowledge, information and skills to make food choices. These interdependent attributes are depicted in a proposed conceptual model. CONCLUSIONS: The lack of evaluated tools inhibits the ability to assess and monitor food literacy; tailor, target and evaluate programmes; identify gaps in programming; engage in advocacy; and allocate resources. The present scoping review provides the foundation for the development of a food literacy measurement tool to address these gaps.

Networking and knowledge exchange to promote the formation of transdisciplinary coalitions and levels of agreement among transdisciplinary peer reviewers.

CONTEXT: Funding for transdisciplinary chronic disease prevention research has increased over the past decade. However, few studies have evaluated whether networking and knowledge exchange activities promote the creation of transdisciplinary teams to successfully respond to requests for proposals (RFPs). Such evaluations are critical to understanding how to accelerate the integration of research with practice and policy to improve population health. OBJECTIVE: To examine (1) the extent of participation in pre-RFP activities among funded and nonfunded transdisciplinary coalitions that responded to a RFP for cancer and chronic disease prevention initiatives and (2) levels of agreement in proposal ratings among research, practice, and policy peer reviewers. DESIGN/SETTING: Descriptive report of a Canadian funding initiative to increase the integration of evidence with action. PARTICIPANTS: Four hundred forty-nine representatives in 41 research, practice, and policy coalitions who responded to a RFP and whose proposals were peer reviewed by a transdisciplinary adjudication panel. INTERVENTION: The funder hosted 6 national meetings and issued a letter of intent (LOI) to foster research, practice, and policy collaborations before issuing a RFP. RESULTS: All provinces and territories in Canada were represented by the coalitions. Funded coalitions were 2.5 times more likely than nonfunded coalitions to submit a LOI. A greater proportion of funded coalitions were exposed to the pre-RFP activities (100%) compared with coalitions that were not funded (68%). Overall research, practice, and policy peer reviewer agreement was low (intraclass correlation 0.12). CONCLUSIONS: There is widespread interest in transdisciplinary collaborations to improve cancer and chronic disease prevention. Engagement in networking and knowledge exchange activities, and feedback from LOIs prior to submission of a final application, may contribute to stronger proposals and subsequent funding success. Future evaluations should examine best practices for transdisciplinary peer review to facilitate funding of proposals that on balance have both scientific rigor and are relevant to the real world.

An international measure of awareness and beliefs about cancer: development and testing of the ABC.

OBJECTIVES: To develop an internationally validated measure of cancer awareness and beliefs; the awareness and beliefs about cancer (ABC) measure. DESIGN AND SETTING: Items modified from existing measures were assessed by a working group in six countries (Australia, Canada, Denmark, Norway, Sweden and the UK). Validation studies were completed in the UK, and cross-sectional surveys of the general population were carried out in the six participating countries. PARTICIPANTS: Testing in UK English included cognitive interviewing for face validity (N=10), calculation of content validity indexes (six assessors), and assessment of test-retest reliability (N=97). Conceptual and cultural equivalence of modified (Canadian and Australian) and translated (Danish, Norwegian, Swedish and Canadian French) ABC versions were tested quantitatively for equivalence of meaning (≥4 assessors per country) and in bilingual cognitive interviews (three interviews per translation). Response patterns were assessed in surveys of adults aged 50+ years (N≥2000) in each country. MAIN OUTCOMES: Psychometric properties were evaluated through tests of validity and reliability, conceptual and cultural equivalence and systematic item analysis. Test-retest reliability used weighted-κ and intraclass correlations. Construction and validation of aggregate scores was by factor analysis for (1) beliefs about cancer outcomes, (2) beliefs about barriers to symptomatic presentation, and item summation for (3) awareness of cancer symptoms and (4) awareness of cancer risk factors. RESULTS: The English ABC had acceptable test-retest reliability and content validity. International assessments of equivalence identified a small number of items where wording needed adjustment. Survey response patterns showed that items performed well in terms of difficulty and discrimination across countries except for awareness of cancer outcomes in Australia. Aggregate scores had consistent factor structures across countries. CONCLUSIONS: The ABC is a reliable and valid international measure of cancer awareness and beliefs. The methods used to validate and harmonise the ABC may serve as a methodological guide in international survey research.

Research, practice, and policy partnerships in pan-Canadian coalitions for cancer and chronic disease prevention.

OBJECTIVE: To describe the development stages of the Coalitions Linking Action and Science for Prevention (CLASP) initiative of the Canadian Partnership Against Cancer to support research, practice, and policy coalitions focused on cancer and chronic disease prevention in Canada. DESIGN: Coalitions Linking Action and Science for Prevention was implemented in 3 stages. This article describes Stage 1 that consisted of an online concept-mapping consultation process, 3 topic specific networking and consultation workshops, and 3 context-specific networking, coalition development, and planning meetings. These were all completed using a participatory engagement approach to encourage knowledge exchange across jurisdictions and sectors in Canada. SETTING: Toronto, Ontario; Calgary, Alberta; Montreal, Québec; and Ottawa, Ontario. PARTICIPANTS: More than 500 researchers, practitioners, and policy specialists were invited to take part in the first stage activities. MAIN OUTCOME MEASURES: (1) Participant-identified high-priority opportunities for strategic collaboration; (2) Cross-jurisdictional and cross-sector representation; and (3) Participant feedback on the CLASP processes and activities. RESULTS: Participants from Stage 1 activities were distributed across all provinces/territories; 3 jurisdictional levels; and research, practice, and policy sectors. Ninety priority opportunities for strategic collaboration were identified across all 3 workshops. Participants provided detailed feedback about transparency of the RFP (Request for Proposals) application process, support needed to level the playing field for potential applicants, and valuable suggestions for the adjudication process. CONCLUSIONS: Coalitions Linking Action and Science for Prevention engaged hundreds of research, practice, and policy experts across Canada focusing social-behavioral, clinical, and environmental and occupational opportunities for cancer and chronic disease prevention. Given the extent of expert and jurisdictional engagement, the substantial Partnership investment in a participatory engagement approach to RFP development and potential applicant response suggests that efforts to link cancer and chronic disease prevention efforts across jurisdictions and through research, practice, and policy collaboration may require this type of a priori investment in networking, communication, coordination, and collaboration.

The E2D2 model: a dynamic approach to cancer prevention interventions.

The E2D2 model is a systematic, evidence-informed approach to designing comprehensive and strategic interventions focused on cancer prevention, with potential applications to the broader chronic disease community. The model was developed using an omnibus approach to account for multilevel influences and determinants of individual and population health, quality of life, and cancer risk. It is focused on the four pillars of health promotion and intervention practice (evidence, evaluation, development, and delivery) and moves through three fundamental phases: identification of risk factors and sensitizing concepts; mediating mechanisms and modifiable contexts; and program development, delivery, and evaluation. Distinguished from other models in the health promotion field, the E2D2 model is designed to be both sequential and feedback oriented, which allows for the emergence of new evidence, procedural revisions, and knowledge exchange to occur during any of its phases.

Knowledge translation in mental health: a scoping review.

Intensified knowledge translation (KT) efforts are considered important in the field of mental health in order to accelerate the implementation of various developments in research, policy and practice. A scoping review of KT focused on the field of mental health was undertaken to help inform development of a Knowledge Exchange Centre being initiated by the Mental Health Commission of Canada. A systematic search of publications in English and French identified 187 publications that met inclusion criteria. Relevant literature was found across a number of disparate thematic research areas: implementation science, community-based and participatory action research, shared decision-making studies, mental health literacy research, network analysis and studies directly addressing KT. The available literature is concerned predominantly with KT efforts between a few specific stakeholder dyads. A paradigm shift has been emerging and has resulted in a progressively broader perspective, incorporating a wider range of participants and increased valuing of experiential knowledge.