Strategy For Patient-Oriented Research Research Articles

A271 EFFECT OF ANTI-TNF AGENTS ON DNA METHYLATION IN PERIPHERAL BLOOD OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE

Abstract Background Despite the success and ongoing use of tumor necrosis factor inhibitors (TNFi) in the treatment of inflammatory bowel disease (IBD), there are no predictors of response to therapy. While much research has gone into understanding genetic risks for IBD, less work has been done exploring epigenetic associations with treatment. Hence, we wondered whether epigenetic changes were associated with failure of TNFi in IBD. Aims Describe the association of TNFi response with DNA methylation in patients with IBD. Methods Participants ≥18 years with IBD (N=169) were selected from the Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects (IMAGINE) Strategy for Patient Oriented Research (SPOR) Network. At enrollment participants completed a questionnaire that included their disease diagnosis, therapy, smoking history, and disease activity using the validated IBD Symptom Inventory (IBDSI). Patients provided whole blood samples that were processed for and run on Illumina DNA methylation arrays. Results The 169 patients were in three treatment groups: TNFi naïve (N=98, never exposed to an anti-TNF agent), TNFi responder (N=32, inactive disease on anti-TNF agent), and TNFi nonresponder (N=39, active disease not on any biologic at time of enrollment). The mean symptom score (SIBDSI) was different across the three groups (pampersand:003C0.001): TNFi nonresponders having a higher SIBDSI (24 ± 6.1) than the TNFi naïve (9.1 ± 5.5) or responder (8.3 ± 4.3) treatment groups. Relative proportions of leukocyte populations were estimated using DNA methylation. CD4 and CD8 T cell and B cell counts were higher (pampersand:003C0.05) in the nonresponders and responders versus TNFi naïve group. Neutrophil counts were lower (pampersand:003C0.05) in the TNFi nonresponders and responders compared to the TNFi naïve group (Figure 1). There was a trend towards increased epigenetic estimates of age acceleration (pampersand:003E0.05) in nonresponders versus responders and TNFi naïve patients, likely driven by disease activity (data not shown). Epigenome-wide analysis of the three groups revealed 16 CpGs for responder versus naïve (e.g. CDK5 regulatory subunit-associated protein 1-like 1 (CDKAL1), and two CpGs for nonresponders versus responders (Table 1). This includes a CpG for guanine nucleotide-binding protein subunit gamma-2 (GNG2) that was shared between the two comparisons. Conclusions Exposure to TNFi is associated with changes in peripheral leukocyte populations independent of response to treatment, indicating a TNFi effect. This implies that anti-TNF treatment is having some effect on patients even if there is clinical nonresponse. Differentially expressed CpGs implicates possible markers of response to treatment, particularly CDKAL1, a gene that has been associated with TNFi response in psoriasis. Funding Agencies Guts and Roses Charity

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations.

Inclusiveness, Support, Mutual Respectand Co-Build are the four pillars of patient engagement according to the Strategy for Patient-Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re-Purposing the Ordering of Routine laboratory Tests (RePORT)'. Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co-chairs of the PAC. Patient research partners were offered training, supportand tailored modalities of compensation to actively engage with the PAC. Regular member check-ins occurred through reflexivity and a formal evaluation of PAC member engagement. The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course-changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co-chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co-design approaches yielded rich research outputs. Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co-Build for meaningful patient engagement. Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co-development of a patient engagement strategy using a Human-Centered Design process.

Collaborating with patients and caregivers to create web-based educational resources for people affected by cirrhosis

ObjectiveTo describe the development of multimodal, web-based educational resources about cirrhosis alongside patients and caregivers. MethodsWe used an iterative process that was guided by the Strategy for Patient Oriented Research (SPOR) patient engagement framework in describing patient engagement activities to partner with a team of 16 patients and caregivers (Patient Advisory Team (PAT)). This process included five phases: a) Prioritize and gather content, b) design and build the website and videos, c) gather and integrate feedback, d) improve user accessibility, and e) assess usability and knowledge uptake for users. ResultsThis 2-year process resulted in a 55-page website and 78 animated and live-action videos on cirrhosis complications, procedures, nutrition, and exercise. We implemented usability testing through pre-defined tasks and a think-aloud method from individuals with no previous exposure to the website to assess navigation, appearance, and content issues. Following usability testing, we have been gathering quantitative data from each unique page about relevance and ease of use, as well as qualitative data on the value of the content itself. ConclusionsCollaboration between clinicians, patients, and caregivers is key to developing high-quality digital educational resources. Lessons from our process may help other organizations looking to address disease-specific knowledge gaps. Next steps with www.cirrhosiscare.ca will be continued iterative refinement and structured impact evaluation. InnovationThis project used a patient-centered approach to develop a comprehensive online educational resource for patients with cirrhosis. By having patients with cirrhosis as a key part of our team, we ensured that the site met the needs of this unique population.

Researcher-patient partnership generated actionable recommendations, using quantitative evaluation and deliberative dialogue, to improve meaningful engagement

ObjectivesTo demonstrate how the 22-item Patient Engagement in Research Scale (PEIRS-22) can be used to develop recommendations for improving the meaningfulness of patient engagement. Study Design and SettingPEIRS-22 previously captured quantitative evaluation data from 15 patient partners in a self-study of the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Guided by deliberative dialogue, the current study involved 3 steps: (1) In-depth analysis and interpretation of the PEIRS-22 data produced a lay evidence summary with identified areas for improvement of meaningful engagement; (2) A 3-hour virtual workshop with patient partners and researchers generated initial recommendations; and (3) In two successive post-workshop surveys, ratings by workshop invitees led to consensus on the recommendations. ResultsTwenty-five participants attended the workshops and dialogued on 8 areas for improvement identified from the PEIRS-22 data. Twenty-eight unique initial recommendations led to consensus on 14 key recommendations organized across 4 categories: setting expectations for all team members, building trust and ongoing communication, providing opportunities to enhance learning and to develop skills, and acknowledging contributions of patient partners. ConclusionUsing PEIRS-22 data within a deliberate dialogue elucidated 14 actionable recommendations to support ongoing improvement of patient engagement at SPOR Evidence Alliance, a pan-Canadian health research initiative.

A176 ASSOCIATIONS OF ANTIBIOTICS, HORMONAL THERAPIES, ORAL CONTRACEPTIVES, AND LONG-TERM NSAIDS WITH INFLAMMATORY BOWEL DISEASE: RESULTS FROM THE PROSPECTIVE URBAN RURAL EPIDEMIOLOGY (PURE) STUDY

A176 ASSOCIATIONS OF ANTIBIOTICS, HORMONAL THERAPIES, ORAL CONTRACEPTIVES, AND LONG-TERM NSAIDS WITH INFLAMMATORY BOWEL DISEASE: RESULTS FROM THE PROSPECTIVE URBAN RURAL EPIDEMIOLOGY (PURE) STUDY

Patient-oriented research and the shiny object syndrome.

Patient-oriented research and the shiny object syndrome.

Commentary on Verdejo-Garcia et al.: Cognitive training and remediation: identifying priorities for intervention research.

The perspectives of youth, adults and family with lived experience and key knowledge users such as health-care providers and decision-makers are critical to further inform these priorities for cognitive intervention research. Verdejo-Garcia and colleagues [1] outline a large-scale and collaborative effort to identify research priorities to address cognitive deficits in substance use disorders. This commentary outlines additional considerations to ensure that strategic and coordinated research priorities have a meaningful impact upon health systems. Put most clearly, the input of youth, adults and family with lived experience and key knowledge users such as health-care providers and decision-makers is critical for cognitive intervention research with impact. As long noted in health science research, the substantial gaps between research and practice require greater connection between academic and knowledge user groups. Increased connectedness between researchers and knowledge users facilitates knowledge mobilization [2] and research impact [3]. It is increasingly considered essential to engage knowledge users in all stages of research focusing upon issues relevant to them, to improve research quality and relevance [4]. Frameworks have been developed to support and advocate for this approach, including Canada's Strategy for Patient-Oriented Research (SPOR) Framework [5], the United Kingdom's National Institute for Health Research [6] and the American Patient-Centered Outcomes Research Network [7]. Substance use research is commonly conducted with limited to no involvement of people who use substances; this practice has the potential not only to fail to address key issues but also to even intensify stigma and marginalization [8, 9]. Verdejo-Garcia and colleagues highlight the potential for the identified consensus to provide a roadmap to direct future participatory research; however, the incorporation of knowledge users to inform the roadmap itself holds considerable value. Indeed, frameworks for engagement such as those noted above recognize the skills and expertise that stakeholders can bring to research and decision-making processes [10]. Research guidelines and frameworks developed by and for people who use substances are available to promote more effective research partnerships at this early stage and may be particularly helpful, as other guidance materials can emphasize health-care providers and decision-makers rather than those with lived experience or the broader community [11]. Recently published key issues in the field further underscore the key importance of engagement from the very beginning of the research process in the substance use field [12]. The input of broad knowledge user groups is particularly important to extend this novel consensus to include harmonized and equitable (a) outcomes and (b) implementation approaches. Regarding outcomes, Verdejo-Garcia and colleagues carefully derive consensus on cognitive targets in cognitive intervention research, and it is likely that primary outcomes would include measures of these targets. However, cognitive intervention research in other domains highlights the importance of functional recovery outcome measures within this research [13, 14]. Indeed, these functional recovery outcomes have greater ecological validity than many cognitive outcomes and often align more closely with patient treatment goals. Such goals are also aligned with long-standing calls in substance use research to go beyond substance use frequency and abstinence as primary outcomes [15]. Nevertheless, those with lived experience as well as health-care providers and decision-makers are critical to determining harmonized outcomes that are relevant and meaningful to health systems and those that access them. Regarding implementation, it is increasingly recognized that nuanced efficacy research must be followed by equally rigorous implementation science research to support the integration of interventions into health systems. Verdejo-Garcia and colleagues do not explicitly endorse a specific approach to this essential phase of research, which would similarly benefit from broad consensus and harmonization. Frameworks such as the Damschroder et al. [16] Consolidated Framework for Implementation Research may support an approach to implementing cognitive interventions globally in a standardized manner and harmonizing implementation outcomes in the future. Consensus upon implementation outcome measures such as acceptability, adoption, appropriateness, cost, feasibility, penetration, sustainability and fidelity is key to a relevant, common and comprehensive list of key outcomes, which may more effectively advance the field and mobilize this knowledge. In summary, health research has long been characterized by a ‘know–do’ gap wherein the results of research frequently fail to be realized in practice and policy [17]. Investigations of cognitive interventions can meaningfully advance both theory and practice. Restructuring health research to prioritize partnerships between researchers and knowledge users, even at the earliest stage of identifying research priorities, is integral to conduct meaningful and impactful research for all [18]. None. There are no financial or other relevant links to companies with an interest in the topic of this article. Lena C. Quilty: Conceptualization (lead); writing—original draft (lead); writing—review and editing (lead).

How "gutsy" does an organization have to be to absorb new information?

Absorptive capacity was first defined in 1990 by Cohen and Levinthal as “an organization’s ability to identify, assimilate, and integrate new knowledge.”1(p.128) In 2002, Zahra and George2 expanded on this definition to emphasize the active process of transforming and exploiting that new knowledge.3 Their extended definition provided the basis for the 4 components of absorptive capacity: i) identify the new knowledge, ii) assimilate the knowledge, iii) integrate the knowledge into the existing knowledge base, and iv) use the new knowledge to change the organization in some way.3 The concept of absorptive capacity has its origins in biology4 and refers to the capacity of the gastrointestinal tract to absorb digested nutrients into the body. Somehow, this term leaked out of the gut and has been adopted by the business world where it is used to help understand and monitor an organization’s capacity to absorb new or innovative knowledge.1 In due course, the health care system also adopted this concept, hence the reason behind our review published in this issue of JBI Evidence Synthesis.3 In preparation for our scoping review, we engaged with all stakeholders and explored our understanding of the concept of absorptive capacity. Then, we examined the literature, seeking to establish how absorptive capacity is conceptualized and measured in the adoption of innovations in health care organizations. A scoping review methodology was deemed the most appropriate methodology to pursue this investigation, as it facilitated the breadth of inquiry required to inform both of these related issues. The review was conducted through the Strategy for Patient Oriented Research (SPOR) Evidence Alliance5 and was initiated by the Knowledge Translation Unit, Strategic Policy Branch of Health Canada. Colleagues from Health Canada were involved at multiple key points throughout the review.6 Most importantly, the entire team, including the Health Canada library scientist, Health Canada director, the Queen’s Collaboration for Health Care Quality research team, SPOR Evidence Alliance staff, and several graduate students, collaborated over multiple meetings to generate and refine the research question. Knowledge-user experts in the field of organizational change were also invited and included in the meeting discussions. Beyond refining the question, this integrated knowledge translation approach7 involved title and abstract screening, full-text review, and editorial contributions to the final report.6 None of the articles included in this review generated a new definition of absorptive capacity; rather, they investigated the influence of local health care contexts on this process. Each context required a different focus on the 4 components of absorptive capacity, and organizations drew attention to the factors that they found valuable to their particular process. It appears that organizations need to be more than just “gutsy” to absorb new information; expertise in each of the components of absorptive capacity is important to the success of this process, and understanding the contribution of context is essential. Measurement of the progress is crucial, and using the domains of absorptive capacity as a framework is beneficial in guiding this process of planning for and assessing the adoption of knowledge within the organization and any change that ensues as a result.

Study within a review (SWAR).

Study within a review (SWAR).

Experiences of caregivers of community-dwelling older persons with moderate to advanced dementia in adapting the Namaste Care program: a qualitative descriptive study

BackgroundGlobally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family members and friends to complete their daily activities. Family and friend caregivers, however, often report a lack of preparation for their caregiving role. There are few psychosocial programs that can be delivered by caregivers of community-dwelling older persons with moderate to advanced dementia. Namaste Care is a psychosocial intervention, predominantly used in long-term care, to improve the quality of life of persons with advanced dementia. Namaste Care provides multisensory stimulation for persons with dementia through meaningful activities such as music, massage, aromatherapy, and nutrition. There have been limited attempts at adapting Namaste Care for use by caregivers in the community.There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement so that strategies can be put in place for a positive experience. The purpose of this study is to explore the experiences of caregivers who participated in workshop sessions to adapt Namaste Care for community-dwelling older persons with moderate to advanced dementia.MethodsA qualitative descriptive design was used. Six caregivers residing in Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) that were guided by the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework. Caregivers completed individual post-workshop interviews. Experiential thematic analysis was used to analyze interviews and post-interview researcher notes.ResultsKey findings were that caregivers had a positive experience in adapting Namaste Care by learning how to improve their caregiving skills and being supported to engage in research through multiple facilitators such as flexible scheduling and an inclusive and respectful environment. Having designated time for discussions between caregivers was perceived as important to forming partnerships within the group to support co-creation of knowledge.ConclusionFindings support the need to improve caregiver research engagement processes by ensuring that caregivers can benefit through learning opportunities and discussions and empowering caregivers to value their contributions in adapting interventions.

Describing the state of a research network: A mixed methods approach to network evaluation.

Diabetes Action Canada Strategy for Patient-Oriented Research (SPOR) Network in Chronic Disease was formed in 2016 and is funded primarily through the Canadian Institutes of Health Research (CIHR). We propose a novel mixed-methods approach to a network evaluation integrating the State of Network Evaluation framework and the Canadian Academy of Health Sciences (CAHS) preferred framework and indicators. We measure key network themes of connectivity, health and results, and impact and return on investment associated with health research networks. Our methods consist of a longitudinal cross-sectional network survey of members and social network analysis to examine Network Connectivity and assess the frequency of interactions, the topics discussed during them, and how networking effectively facilitates interactions and collaboration among members. Network Health will be evaluated through semistructured interviews, a membership survey inquiring about satisfaction and experience with the Network, and a review of documentary sources related to funding and infrastructure to evaluate Network Sustainability. Finally, we will examine Network Results and Impact using the CAHS preferred framework and indicators to measure returns on investment in health research across the five domains of the CAHS framework, which include: advancing knowledge, capacity building, informing decision making, health impact, and economic and social impact. Indicators will be assessed with various methods, including bibliometric analyses, review of relevant documentary sources (annual reports), member activities informing health and research policy, and Patient Partner involvement. The Network Evaluation will provide members and stakeholders with information for planning, improvements, and funding future Network endeavors.

Activities and impacts of patient engagement in CIHR SPOR funded research: a cross-sectional survey of academic researcher and patient partner experiences

BackgroundKnowledge about the specific engagement activities pursued and associated impacts of patient engagement in research in Canada remains nascent. This study aimed to describe engagement activities and perceived impacts of projects funded by the Strategy for Patient-Oriented Research (SPOR).MethodsThis was a cross-sectional online survey of academic researchers and patient partners engaging in projects funded through 13 SPOR funding calls (2014–2019). Patient engagement activities and impacts were measured using a self-developed survey. Thematic analysis was used to describe engagement activities and impacts.Results66 of 511 academic researchers and 20 of 28 patient partners contacted completed the survey and were included in analyses. Respondents reported that patient partners were engaged in seven types of activities across the research cycle: (a) sharing experiences/giving advice, (b) identifying the research focus/methods, (c) developing/revising aspects of the project, (d) conducting research activities, (e) study participation, (f) presenting on behalf of the project, and (g) other grant development or knowledge translation activities. Engagement was associated with six different types of impacts related to knowledge, outputs, or directions being (a) created, (b) moulded, (c) confirmed, or (d) chosen/prioritized, (e) perceived success of the research, and (f) minimal/negative impacts on the research.ConclusionsThis study presents information on different ways that patient partners were engaged in SPOR-funded research and the potential impacts of these activities. This knowledge base is imperative to the future of patient engagement in research, including the planning and evaluation of future studies that engage patients as active shapers of research.

Inter-individual relationships within a Canadian SPOR research network: a social network study

BackgroundEfforts have been made by health research granting agencies to bring research closer to patients’ concerns. In Canada, such efforts were formalized in 2011 with the funding of the Strategy for Patient-Oriented Research (SPOR)’s research networks to address research priorities identified by patients and accelerate the translation of research findings into patient care and health care policy. Among these networks, SPOR Diabetes Action Canada (DAC) has created patient-partner circles to facilitate their integration within the network. The nature of the relationships within this atypical patient-oriented research network is systematically explored in this paper.MethodsA cross-sectional social network study was conducted among the SPOR DAC’s network members to examine inter-individual interactions, and the topics discussed the most between members. Descriptive data analyses were conducted to explore which discussion topics were discussed most among members whose primary roles were research, administration, governance, and patient representation.ResultsThe response rate was 51.9%, providing data on 76.5% of the maximum number of connections in the network. The survey captured 2763 inter-individual relationships. Responses to a sub-question inserted in the survey show that 482 of these relationships (17,4%) existed before joining the network in collaboration on a research project. Most ties captured in the survey were yearly or quarterly, while few relationships were monthly, weekly, or daily. In measured relationships, members discussed several topics, the most frequent being scientific research, patient engagement, network coordination and governance, and operations and management. The topics associated with the most significant proportion of relationships captured in the survey were scientific research (45.4%) and patient engagement (40.7%). Management & operations and governance & coordination follow, corresponding to 24.3 and 23.9% of the captured relationships. All discussion topic subnetworks were either somewhat or highly centralized, meaning that relationships were not equally distributed among members involved in these discussions. Of the 1256 relationships involving exchanges about scientific research, 647 (51.5%) involved a researcher, 419 (33.3%) an administrator, 182 (14.5%) a patient partner, and 82 (6.5%) a member whose primary role is network governance.ConclusionsScientific research and patient engagement were the most common topics discussed, consistent with the patient-centered research at the heart of the SPOR Diabetes Action Canada network. The study identified several relationships where a patient partner has discussed scientific research with a researcher. However, relationships involving research discussions were three times more common between a researcher and an administrator than between a researcher and a patient partner, although twice as many patient partners as administrators participated in the survey. The institutionalization of patient-partner involvement in large research networks is an evolving practice for which optimal engagement methods are still being explored.

Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience

BackgroundEurope and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other repercussions. As a result, they often avoid, delay, or leave care, resulting in premature death and missed opportunities for care. Internationally, there have been concerted efforts to move towards patient-engaged research to enhance the quality of health care systems and services. In Canada, the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative promotes engagement of patients as active partners in health care research. As part of a community based patient oriented research project, we critically analyze the SPOR framework to provide insights into what constitutes safer research with people who use(d) substances.MethodsWe undertook a two-stage process that began with a review of community based research principles and the SPOR framework. At the second stage, we undertook a qualitative descriptive study employing focus groups to generate description of the adequacy and appropriateness of the SPOR framework for guiding research with people who use(d) substances on four key dimensions (patient engagement, guiding principles, core areas of engagement and benefits). The data were analyzed using qualitative content analysis to identify key issues and insights.ResultsWhile the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings.ConclusionsGiven the extent of stigma in health care and the ongoing illicit drug policy crisis, strategies for enhancing equitable Patient-Oriented Research (POR) include shifting language from patient partners to community researchers, recognizing power inequities and adding trust and equity as core POR principles including pay equity. Employing community based participatory research as a POR methodology allows the lead researchers to fully engage community throughout the research process, enhances community benefits and accountability for action.

PROTOCOL: Barriers and facilitators to stakeholder engagement in health guideline development: A qualitative evidence synthesis.

There is a need for the development of comprehensive, global, evidence-based guidance for stakeholder engagement in guideline development. Stakeholders are any individual or group who is responsible for or affected by health- and healthcare-related decisions. This includes patients, the public, providers of health care and policymakers for example. As part of the guidance development process, Multi-Stakeholder Engagement (MuSE) Consortium set out to conduct four concurrent systematic reviews to summarise the evidence on: (1) existing guidance for stakeholder engagement in guideline development, (2) barriers and facilitators to stakeholder engagement in guideline development, (3) managing conflicts of interest in stakeholder engagement in guideline development and (4) measuring the impact of stakeholder engagement in guideline development. This protocol addresses the second systematic review in the series. The objective of this review is to identify and synthesise the existing evidence on barriers and facilitators to stakeholder engagement in health guideline development. We will address this objective through two research questions: (1) What are the barriers to multi-stakeholder engagement in health guideline development across any of the 18 steps of the GIN-McMaster checklist? (2) What are the facilitators to multi-stakeholder engagement in health guideline development across any of the 18 steps of the GIN-McMaster checklist? A comprehensive search strategy will be developed and peer-reviewed in consultation with a medical librarian. We will search the following databases: MEDLINE, Cumulative Index to Nursing & Allied Health Literature (CINAHL), EMBASE, PsycInfo, Scopus, and Sociological Abstracts. To identify grey literature, we will search the websites of agencies who actively engage stakeholder groups such as the AHRQ, Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR), INVOLVE, the National Institute for Health and Care Excellence (NICE) and the PCORI. We will also search the websites of guideline-producing agencies, such as the American Academy of Pediatrics, Australia's National Health Medical Research Council (NHMRC) and the WHO. We will invite members of the team to suggest grey literature sources and we plan to broaden the search by soliciting suggestions via social media, such as Twitter. We will include empirical qualitative and mixed-method primary research studies which qualitatively report on the barriers or facilitators to stakeholder engagement in health guideline development. The population of interest is stakeholders in health guideline development. Building on previous work, we have identified 13 types of stakeholders whose input can enhance the relevance and uptake of guidelines: Patients, caregivers and patient advocates; Public; Providers of health care; Payers of health services; Payers of research; Policy makers; Program managers; Product makers; Purchasers; Principal investigators and their research teams; and Peer-review editors/publishers. Eligible studies must describe stakeholder engagement at any of the following steps of the GIN-McMaster Checklist for Guideline Development. All identified citations from electronic databases will be imported into Covidence software for screening and selection. Documents identified through our grey literature search will be managed and screened using an Excel spreadsheet. A two-part study selection process will be used for all identified citations: (1) a title and abstract review and (2) full-text review. At each stage, teams of two review authors will independently assess all potential studies in duplicate using a priori inclusion and exclusion criteria. Data will be extracted by two review authors independently and in duplicate according to a standardised data extraction form. The results of this review will be used to inform the development of guidance for multi-stakeholder engagement in guideline development and implementation. This guidance will be official GRADE (Grading of Recommendations Assessment, Development and Evaluation) Working Group guidance. The GRADE system is internationally recognised as a standard for guideline development. The findings of this review will assist organisations who develop healthcare, public health and health policy guidelines, such as the World Health Organization, to involve multiple stakeholders in the guideline development process to ensure the development of relevant, high quality and transparent guidelines.

The Growing Imperative for Patient and Caregiver Partnership.

This special edition of Healthcare Quarterly (HQ) has been developed through a novel partnership between the Ontario Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit (OSSU) and Longwoods Publishing. The concept for this edition emerged from an alignment of interests between the partners. OSSU's mandate is to support patient-oriented health and health services research in Ontario and to facilitate the uptake of research evidence to improve health policy and decision making. HQ's mission is to recognize, nurture and champion excellence in the Canadian healthcare system by sharing leading practices in health services delivery and policy development. As we look toward the future of healthcare and health system transformation, leading practices will be increasingly defined by the degree to which they are designed and implemented in full partnership with patients and caregivers. This perspective, shared by both OSSU and Longwoods, is at the heart of this publication.

Acknowledgements

This special edition of Healthcare Quarterly, entitled "Engaging Patients in Research Evidence Uptake: The Ontario Experience," was prepared on behalf of the Ontario Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit (OSSU) and would not have been possible without the enormous efforts and support of many individuals across the province.

Toward equity-oriented cancer care: a Strategy for Patient-Oriented Research (SPOR) protocol to promote equitable access to lung cancer screening

BackgroundScreening for lung cancer with low dose CT can facilitate the detection of early-stage lung cancers that are amenable to treatment, reducing mortality related to lung cancer. Individuals are considered eligible for lung cancer screening if they meet specific high-risk criteria, such as age and smoking history. Population groups that are at highest risk of lung cancer, and therefore, the target of lung cancer screening interventions, are also the least likely to participate in lung cancer screening. This can lead to a widening of health inequities. Deliberate effort is needed to both reduce lung cancer risk (through upstream interventions that promote smoking cessation) as well as midstream interventions that promote equitable access to lung cancer screening.MethodsThis protocol paper describes an equity-informed patient-oriented research study. Our study aims to promote equitable access to lung cancer screening by partnering with patients to co-design an e-learning module for healthcare providers. The learning module will describe the social context of lung cancer risk and promote access to lung cancer screening by increasing equity at the point of care. We have applied the Generative Co-Design Framework for Healthcare Innovation and detail our study processes in three phases and six steps: Pre-design (establishing a study governance structure); Co-design (identifying research priorities, gathering and interpreting data, co-developing module content); and Post-design (pilot testing the module and developing an implementation plan).DiscussionPatient engagement in research can promote the design and delivery of healthcare services that are accessible and acceptable to patients. This is particularly important for lung cancer screening as those at highest risk of developing lung cancer are also those who are least likely to participate in lung cancer screening. By detailing the steps of our participatory co-design journey, we are making visible the processes of our work so that they can be linked to future outcomes and related impact, and inform a wide range of patient co-led processes.

Building the foundation for a practice-based research network: supporting primary care research across Canada.

Context: The Strategy for Patient Oriented Research (SPOR) was designed to engage previously passive stakeholders in the research process to ensure that the most urgent health challenges are addressed with evidence-based solutions that are feasible and scalable. The Primary and Integrated Health Care Innovations Network (PIHCIN), one of multiple SPOR entities, is rooted in community-based primary health care and meant to support transformation of primary and integrated care to improve patient experiences and health. Objective: To describe key components of building the foundation for a cross-jurisdictional, practice-based research network. Design: Cross-sectional survey and PIHCI network documentation review. Setting: SPOR PIHCI networks within British Columbia; Alberta; Saskatchewan; Manitoba; Ontario; Quebec; New Brunswick; Nova Scotia; Prince Edward Island; Newfoundland and Labrador; and the Northwest Territories. Participants: Responses were received from 11 networks who completed a template asking about their governance, capacity building, stakeholder engagement and patient partners. Responses were also received from the SPOR PIHCIN Pan-Canadian Patient Council. Outcome Measures: Thematic analysis across responses and documents for key components foundational to PIHCIN: types of stakeholders engaged, types of capacity building activities, knowledge translation and exchange activities. Results: Tripartite (clinician, scientist, decision-maker) leadership was used to align more closely with provincial and territorial needs in bringing practice and research closer together. PIHCIN enabled a unique pan-Canadian forum for government staff responsible for primary care. Individual networks and the PIHCIN patient-partners were actively engaged in research and governance on all levels including leading their own research. PIHCIN built research capacity by partnering with the Transdisciplinary Understanding and Training on Research Primary Health Care (TUTOR-PHC) and embedding fellows within the network. The PIHCI network undertook two separate learning series featuring patients, policy makers and scientists that were open to the public and demonstrated clear impact. Conclusion: Foundational components of embedded patients-partners, tripartite leadership, capacity building and knowledge translation and exchange have led to the formation of the PIHCI network providing an excellent base to build a pan-Canadian practice-based research and learning platform.

Impact of patient partner co-design on survey development in primary care research: Case study.

Canada’s Strategy for Patient-Oriented Research—a national coalition of several institutions and organizations across Canada—emphasizes the importance of patients, researchers, health care providers, and decision makers working collaboratively to improve the health of Canadians.[1][1] Patient