Fit for purpose. Co-production of complex behavioural interventions. A practical guide and exemplar of co-producing a telehealth-delivered exercise intervention for people with stroke

Background Careful development of interventions using principles of co-production is now recognized as an important step for clinical trial development, but practical guidance on how to do this in practice is lacking. This paper aims (1) provide practical guidance for researchers to co-produce interventions ready for clinical trial by describing the 4-stage process we followed, the challenges experienced and practical tips for researchers wanting to co-produce an intervention for a clinical trial; (2) describe, as an exemplar, the development of our intervention package. Method We used an Integrated Knowledge Translation (IKT) approach to co-produce a telehealth-delivered exercise program for people with stroke. The 4-stage process comprised of (1) a start-up planning phase with the co-production team. (2) Content development with knowledge user informants. (3) Design of an intervention protocol. (4) Protocol refinement. Results and reflections The four stages of intervention development involved an 11-member co-production team and 32 knowledge user informants. Challenges faced included balancing conflicting demands of different knowledge user informant groups, achieving shared power and collaborative decision making, and optimising knowledge user input. Components incorporated into the telehealth-delivered exercise program through working with knowledge user informants included: increased training for intervention therapists; increased options to tailor the intervention to participant’s needs and preferences; and re-naming of the program. Key practical tips include ways to minimise the power differential between researchers and consumers, and ensure adequate preparation of the co-production team. Conclusion Careful planning and a structured process can facilitate co-production of complex interventions ready for clinical trial. Graphical Abstract

The value of hackathons in integrated knowledge translation (iKT) research: Waterlupus

Background Despite a growing movement toward a knowledge-user-driven research process, our understanding of the generation, implementation and evaluation of specific approaches in the integrated knowledge translation (iKT) toolbox that aim to engage health and healthcare knowledge users is limited. Health hackathons offer an innovative approach with potential to generate direct and indirect health-related outcomes benefitting participants, knowledge users and the broader population. In May 2019, our research team hosted Waterlupus, a health hackathon to improve the economic lives of individuals with systemic lupus erythematosus (SLE) in Canada. Waterlupus was held with a multi-stakeholder group of 50 participants that included advocacy organization representatives, policy-makers, researchers, physicians, individuals with lived experience and students. While the hackathon generated viable solutions with the potential to positively impact the lives of individuals with SLE, understanding how participants perceived the hackathon as an iKT tool is critical in the planning and implementation of future iKT research. Methods Semi-structured in-depth telephone interviews were conducted with Waterlupus participants (n = 13) between August and November 2019 to (1) explore participant experiences of the hackathon; (2) investigate participant-identified hackathon outcomes; and (3) elicit recommendations for future iKT research using health hackathons. Results Participants provided feedback on the format and organization of Waterlupus, and identified direct and indirect outcomes to knowledge users, students and researchers beyond the innovations generated at the event. While the majority (n = 11) had never participated in a hackathon prior to Waterlupus, all 13 stated they would participate in future hackathons. Positive outcomes identified include connecting with students and other SLE stakeholders, the formation of professional and support networks, increased awareness of SLE, as well as the innovations generated. Participant recommendations for future health hackathons include the addition of stakeholders from industry or technology, and the need for clear and designated roles for stakeholders to ensure efficient use of resources. Conclusions This work contributes to a limited literature regarding the use of health hackathons for social innovation, and offers knowledge-user suggestions relevant to the implementation of future iKT events, and hackathons specifically.

Using social media to engage knowledge users in health research priority-setting: a scoping review (Preprint)

BACKGROUND The importance of including knowledge users (patients, family caregivers, clinicians, other advocates) in health research priority-setting is becoming increasingly recognized. Social media-based methods represent one means to elicit and prioritize the research interests of knowledge users, but there remains sparse methodological guidance on how best to conduct social media efforts and assess their effectiveness. OBJECTIVE This scoping review aimed to identify studies that used social media methods to engage knowledge users in research priority-setting. We synthesized associated data to understand how the methods are being used, how method effectiveness is directly and indirectly measured, and benefits, limitations, and recommendations. METHODS We searched PubMed, EMBASE, Cochrane Library, Scopus, and Web of Science from database inception until June 2020. Two reviewers screened all titles and abstracts, as well as full-texts. We included all peer-reviewed studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority-setting. We conducted a subsequent thematic analysis using NVivo 12 to aggregate study data into related codes and themes. RESULTS A total of 18 papers reporting on 17 unique studies were included. These studies utilized Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and online forums to engage with knowledge users. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling, and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used; and indirectly assessed as the total number of survey responses and the number of visits to external survey administration sites. Included studies recommended the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS Social media may increase the speed and reach of knowledge user priority-setting participation opportunities leading to the development of research agendas informed by patient, family caregivers, clinicians, and other advocates. Perceived limitations of the approach include underrepresentation of certain groups and addressing these limitations will ensure the inclusion of research priority opinions of a broad knowledge user group.

Defining the Scope of Knowledge Translation Within a National, Patient-Oriented Kidney Research Network

Purpose of program: Integrated knowledge translation (IKT) is a collaborative approach whereby knowledge created through health research is utilized in ways that are relevant to the needs of all stakeholders. However, research teams have limited capacity and know-how for achieving IKT, resulting in a disconnect between the generation and application of knowledge. The goal of this report is to describe how IKT research was achieved across a large-scale, patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD). Sources of information: Resources to facilitate knowledge translation (KT) planning across the network were developed by the Can-SOLVE CKD Knowledge User/Knowledge Translation Committee with reference to established Canadian KT and patient engagement tools and frameworks, review of the published and gray literature, and expertise of committee members. Methods: The Can-SOLVE CKD Knowledge User/Knowledge Translation Committee consisting of patient partners, health care providers, policymakers, and researchers provided oversight of the development and implementation of the network’s IKT initiatives. Guided by its strategic framework, the committee developed KT planning templates and review checklists to assist network projects with preparing for dissemination, implementation, and scale and spread of their interventions. The committee has acted in a consultative capacity to facilitate IKT across network initiatives and has supported capacity building through KT activities aimed at network membership and knowledge users more broadly. Key findings: The Can-SOLVE CKD Knowledge User/Knowledge Translation Committee established a nation-wide strategy for KT infrastructure and capacity building. Acting as a knowledge intermediary, the committee has connected research teams with knowledge users across Canada to support practices and policies informed by evidence generated by the network. The committee has developed KT initiatives, including a Community of Practice, whereby participants across different regions and disciplines convene regularly to share health research knowledge and communications strategies relevant to the network. Critically, patients are engaged and contribute throughout the research process. Examples of IKT activities from select projects are provided, as well as ways for sustaining the network’s KT platform. Limitations: The KT resources developed by the committee were adapted from other established resources to meet the needs of the network and have not undergone formal evaluation in this context. Given the broad scope of the network, resources to facilitate implementation and knowledge user engagement may not meet the needs of all initiatives and must be tailored accordingly. Knowledge barriers, including a lack of information and skills related to conceptual and practical aspects of KT, among network members provided a rationale for various KT capacity–building initiatives. Implications: The approach described here offers a practical method for achieving IKT, including how to plan, implement, and sustain initiatives across large-scale health research networks. Within the context of Can-SOLVE CKD, these efforts will shorten knowledge-practice gaps through producing and applying relevant research to improve the lives of people living with kidney disease.

A Team-Based Comparative Case Study of Violence Across Care Settings for Older Adults in Two Canadian Provinces

Violence can lead to physical and psychological harm, emotional exhaustion, and burnout for paid and unpaid carers. Concomitantly, being regarded as violent, aggressive, or difficult can have a direct impact on older adults’ sense of self, care relationships, and quality of care. Current research on violence and aging lacks systemic understanding of the environments and multi-level factors that precipitate or inhibit violent interactions across settings of long-term care. This research involves a multi-jurisdictional comparative research study of violence in home care and long-term care settings in two Canadian provinces (Manitoba and Nova Scotia). Study participants will include older adults, family carers, and care workers. Data collection will involve five phases, starting with document analysis and provincial surveys, and followed by remote interviews (including photo-elicitation), digital diaries, and observations. The integration of mixed methods data and comparison across provinces will generate rich explanations of the multi-level influences on violence and responses to violence as well as guide the development of an anti-violence policy framework in partnership with knowledge users. The study is approved by five university ethics committees and health authorities in each jurisdiction. All phases will be guided by a knowledge user advisory committee including older adults, family carers, healthcare workers, unions, long-term care organizations, and other relevant stakeholder groups from Manitoba and Nova Scotia. Results will be reviewed by the knowledge user advisory committee and made available through a series of reports, presentations, and journal articles.

Collaborative health research partnerships: a survey of researcher and knowledge-user attitudes and perceptions

Background Integrated knowledge translation describes the process of partnered research between different stakeholders with the goal of producing research that ultimately achieves a greater impact when put into practice. A better understanding of research partnerships and integrated knowledge translation has implications for future partnerships and collaborative initiatives in practice. Our research describes and expands upon previous work done to identify barriers and attitudes toward collaboration in the context of research funding opportunities that required researcher–knowledge-user partnerships. Methods A survey was sent out to researchers funded by the Canadian Institutes of Health Research and knowledge-users who worked collaboratively on their research projects. There were two mirror versions of the survey, one for researchers and one for knowledge-users. Descriptive statistics, χ2 analysis and Mann–Whitney U analysis were used to understand the processes, barriers, perceived impact and sustainability of the partnerships. Results The results revealed that, although there were differences in the roles of researchers and knowledge-users, both groups felt very positive towards their partnerships. Some of the barriers identified as inhibiting effective partnerships were resource constraints (funding/time) and differences in contribution and involvement amongst team members. Despite these barriers, both researchers and knowledge-users felt that the partnership was not only sustainable, but also helped create an impact. Conclusions Our results provide useful information for funding agencies launching opportunities requiring or encouraging collaborative research projects between researchers and knowledge-users.

A review and synthesis of frameworks for engagement in health research to identify concepts of knowledge user engagement

Background Engaging those who influence, administer and/or who are active users (“knowledge users”) of health care systems, as co-producers of health research, can help to ensure that research products will better address real world needs. Our aim was to identify and review frameworks of knowledge user engagement in health research in a systematic manner, and to describe the concepts comprising these frameworks. Methods An international team sharing a common interest in knowledge user engagement in health research used a consensus-building process to: 1) agree upon criteria to identify articles, 2) screen articles to identify existing frameworks, 3) extract, analyze data, and 4) synthesize and report the concepts of knowledge user engagement described in health research frameworks. We utilized the Patient Centered Outcomes Research Institute Engagement in Health Research Literature Explorer (PCORI Explorer) as a source of articles related to engagement in health research. The search includes articles from May 1995 to December 2017. Results We identified 54 articles about frameworks for knowledge user engagement in health research and report on 15 concepts. The average number of concepts reported in the 54 articles is n = 7, and ranges from n = 1 to n = 13 concepts. The most commonly reported concepts are: knowledge user - prepare, support (n = 44), relational process (n = 39), research agenda (n = 38). The least commonly reported concepts are: methodology (n = 8), methods (n = 10) and analysis (n = 18). In a comparison of articles that report how research was done (n = 26) versus how research should be done (n = 28), articles about how research was done report concepts more often and have a higher average number of concepts (n = 8 of 15) in comparison to articles about how research should be done (n = 6 of 15). The exception is the concept “evaluate” and that is more often reported in articles that describe how research should be done. Conclusions We propose that research teams 1) consider engagement with the 15 concepts as fluid, and 2) consider a form of partnered negotiation that takes place through all phases of research to identify and use concepts appropriate to their team needs. There is a need for further work to understand concepts for knowledge user engagement.