Tight budgets complicate Canadian health research reforms

CIHR) -supports research that focuses on cardiovascular health, respiratory health, blood and blood vessels, stroke, critical/intensive care, and sleep/circadian rhythms.Together, the disease areas that are covered under the mandate of the ICRH represent conditions with the largest health, societal, and economic burden of any of the other Institutes within CIHR.This reality and the extraordinary diversity of these medical conditions present a major operational challenge for the ICRH.Despite these difficulties and limited resources, the Institute's 2013-2016 Strategic Plan1 demonstrates a commitment to ensuring that research excellence, capacity, competitiveness, innovation, and impact are enhanced across all research fields affiliated with the Institute.Moreover, building on previous successes, the ICRH continues to nurture past collaborations and work to establish new meaningful national and international alliances with the research community, partners, and other stakeholders to develop interdisciplinary, integrative health research that reflects Canada's emerging health needs, gaps, and opportunities.The ICRH also strongly supports partnerships with relevant stakeholders to accelerate the transfer of new knowledge into benefits for Canadians.Notably, patient engagement is an important priority that will serve as 1 of the major building blocks of all clinically related initiatives of the ICRH.Based on identified gaps, opportunities, and feedback received from the International External Review Panel,2 ICRH research communities and partners, and in alignment with the CIHR 2014-2018 Strategic Plan, the ICRH identified 4 research priorities for 2013-2016.The first priority focuses on enhancing capacity, competitiveness, and impact of our communities through networking.This objective is consistent with the importance of aligning with CIHR's largest comprehensive Roadmap Signature Initiative (RSI) the Strategy for Patient-Oriented Research (SPOR).In 2013, the Institute launched the ICRH Emerging Networks program in 3 gap areas, funding the Canadian Vascular Network, Canadian Respiratory Research Network, and the Canadian Stroke Prevention Intervention Network.In addition, through focused community development programs in critical care, stroke treatment and recovery, sleep and circadian rhythms, blood diseases, and resuscitation clinical research, the ICRH has targeted 5 additional research communities in need of networking.Aligned with CIHR's Patient Engagement Framework,3 the ICRH will use specific actions and tools to enhance patient engagement in health research, implement patient engagement as a core priority in strategic initiatives, and offer programs that will allow patients to be true partners in research.Finally, the ICRH is continuing its collaboration with the National Heart, Lung, and Blood Institute of the National Institutes of Health in the ongoing support of 2 large Canada-US networks--the Resuscitation Outcomes Consortium and the Cardiothoracic Surgical Network, and will explore other international network opportunities.

Like Dr. J.A. Amyot, a pioneer in preventive medicine, the Canadian Institutes of Health Research Institute of Aboriginal Peoples’ Health (CIHR-IAPH) is a pioneer in Aboriginal health research. We are one of the 13 founding Institutes of the Canadian Institutes of Health Research. Our vision is to enhance the well-being of First Nations, Inuit and Metis people in Canada by supporting innovative research programs that are based on scientific excellence and community cooperation. Our mission is to improve the health and well-being of Aboriginal people. To do this, we must build research capacity among Aboriginal communities in Canada and in indigenous communities around the world by forming alliances and partnerships in the global health research arena. Our goals are ambitious. Yet we are faced with many challenges.

In 2009 Dr. Bernard Prigent, the Vice-President and Medical Director of Pfizer, was appointed a member of the Canadian Institutes of Health Research (CIHR) Governing Council1. Historically, an infiltration of this kind is nearly unprecedented in Canada. The pharmaceutical industry has long been a source of funding for research, sponsoring public endeavours in basic-science. While the radiological community has previously been unaffected, the evolving disciplines of molecular imaging, interventional oncology and others bring the specialty in closer contact with the pharmaceutical industry. The investment is advantageous for corporations like Pfizer, which can appropriate data from discoveries for future market use. However, the appointment of Prigent at the level of explicit policy allows him to recommend actions which favour the pharmaceutical industry. Public Citizen, an umbrella organization housing a number of interacting groups such as the Health Research Group and Global Trade Watch, has commented that the arrangement represents a clear conflict of interest [1]. The council to which Prigent belongs wields significant power over the CIHR. Among its responsibilities are the formation and discontinuation of institutes which evaluate the CIHR, the appointment of subordinate directors, and budget approval. Moreover, members of the Governing Council are permitted to advise the Minister of Health as to whom directorial candidates should be.CIHR President Alain Beaudet regards the appointment as another milestone in a series of inevitable events intertwining the public and private sectors, as Canada seeks to meet its Science and Technology Strategy put forth in 2007 [2]. He reasons that facilitating the success of industry is the only way to ensure continued investment, and that the increasing reality of industry sponsored co-funding on ambitious projects is here to stay. At one time, Dr. Beaudet sat on the peer-review committee for the National Institutes of Health (NIH) when members of industry sat comfortably among academic representatives on the Advisory to the Director, which is analogous to the Governing Council. Since then, there has been a divergence in philosophy between the NIH and CIHR. The criteria for conflict-of-interest appointments have become much stricter with the United States review body, and no pharmaceutical executives sit on the advisory board [3]. The CIHR apparently does not feel so compelled.One of the overriding issues with industry-funded research initiatives is that resultant work often becomes exclusively licensed to industry. If it is true that industrial-academic partnerships are necessary, it is accepted that researchers may redefine their priorities in order to court grants [4]. Notably, Prigent himself does not have control over grant recipient selection. This instead falls to the Scientific Council, as Russell Williams, President of RD the largest in the country’s history.There is precious little reason to believe any Governing Council member with employment obligations to one a pharmaceutical would defer to any contradicting ethical suggestions. Thus, a systematic upheaval may be required to remove ethical conflicts entirely. No arrangement at the NIH or CIHR is permanent, and it is up to the next generation of medical professionals to decide just what we feel is appropriate for our country’s grant-making body.

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.

The Assembly of First Nations (AFN) is disputing the Canadian Institutes of Health Research (CIHR) claim that one of its top priorities is research into the causes of the health inequities bedevilling indigenous Canadians. “We are deeply worried that far from prioritizing Aboriginal health

BackgroundIn Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines ‘patient-oriented research’ as a continuum of research that engages patients as partners, focuses on patient priorities, and leads to improved patient outcomes. The overarching term ‘patient’ is inclusive of individuals with personal experience of a health issue as well as informal caregivers including family and friends. The vision for the strategy is improved patient experiences and outcomes through the integration of patient-oriented research findings into practice, policy, and health system improvement. Building capacity in patient-oriented research among all relevant stakeholders, namely patients, practitioners, organizational leaders, policymakers, researchers, and research funders is a core element of the strategy.Main bodyThe objective of this paper is to describe capacity building initiatives in patient-oriented research led by the Ontario SPOR SUPPORT Unit in Ontario, Canada over the period 2014–2020.ConclusionThe Ontario SPOR SUPPORT Unit Working Group in Training and Capacity Development has led numerous capacity building initiatives: developed a Capacity Building Compendium (accessed greater than 45,000 times); hosted Masterclasses that have trained hundreds of stakeholders (patients, practitioners, organizational leaders, policymakers, researchers, and trainees) in the conduct and use of patient-oriented research; funded the development of online curricula on patient-oriented research that have reached thousands of stakeholders; developed a patient engagement resource center that has been accessed by tens of thousands of stakeholders; identified core competencies for research teams and research environments to ensure authentic and meaningful patient partnerships in health research; and shared these resources and learnings with stakeholders across Canada, North America, and internationally.

Aboriginal health projects received less than 1% of the funding awarded by the Canadian Institutes of Health Research (CIHR) in its first major competition since restructuring — an outcome Aboriginal researchers say illustrates the need to reconcile the new system with the vast inequities in

Patients regularly tell me that they have checked my credentials online — one of several ways adults seek information on the Internet about health, specific diseases, treatments, hospital outcomes and insurance providers. This and the next issue of the Canadian Journal of Surgery include articles discussing online health information,1,2 providing insight on the quantity, quality and readability of information that plays a role in patients’ decision-making. The authors challenge surgeons to regard health websites as a potential way to form useful partnerships with patients. These data from Canadian1 and UK2 centres are complemented by recent data that reported that 80% of US adults who are online search for health information.3 In contrast with the assumption that only younger adults perform online searches, all age groups were well represented. Thus, patients with online access are increasingly likely to seek authoritative information on surgical care to discuss with their surgeons. Online social networking promises to push the discussion even further. Social media websites, such as Facebook, Twitter and YouTube, have become mainstream 2-way communication tools. Social networking is growing rapidly among all age groups, with young adults in the lead. Social media websites are accessible and affordable, and information can be accessed in plain language. The power of social networks to effect change was recently observed when mass populations challenged political leaders to publicly sanction individuals who participated in the Stanley Cup riots in Vancouver, BC. Within the health domain, many hospitals have social networking accounts and microblogging sites to allow the public to communicate with health providers. Almost all medical schools have a social media presence, and strong linkages with social networks are found with online ratings of medical doctors and professors. The Canadian Institutes of Health Research (CIHR) has engaged young Canadians with health researchers through its Synapse — CIHR Youth Partnership. The Canadian Association of General Surgeons website hosts online professional networking with its WIKI Surgery. Surgeons cannot ignore the massive wave of increasing online information and social media presence. Proponents for more physician engagement with social media argue that this is an opportunity to improve communication with patients and transcend partnerships that improve health outcomes. At the very least, surgeons can check their own online presence to determine if there is accurate representation of their skill sets. There are some potential pitfalls of social networking, including loss of patient confidentiality, blurred boundaries between personal and professional net-working, unprofessional conduct, unreliable information and time constraints that limit effective dialogue. The American Medical Association recently approved ethical guidelines to encourage use of social media by doctors4 that provide several helpful recommendations, including standards of privacy and confidentiality, use of appropriate privacy settings, self-monitoring of online presence for accuracy, maintenance of boundaries between personal and professional use of social media, self-regulation of standards for online etiquette and awareness of the impact of social media on public trust. A recent publication by the Massachusetts Medical Society identified a thoughtful summary of best practices for physicians who use social media professionally.5 Online health information is available to the public in many forms. Surgeons need to be aware of the opportunities being accessed by their patients through this medium. Guidelines for professional use of social media should be broadly disseminated, and continuing medical education programs should educate surgeons and their trainees on the opportunities to harness social media for improved public dialogue. Without this, surgeons may be marginalized by ignorance of the “twitter” of information that occurs outside their operating rooms.

Background The Canadian Institutes of Health Research (CIHR) defines knowledge translation (KT) as a dynamic and iterative process that includes the synthesis, dissemination, exchange, and ethically-sound application of knowledge to improve the health of Canadians, provide more effective health services and products, and strengthen the healthcare system. CIHR, the national health research funding agency in Canada, undertook to advance this concept through direct research funding opportunities in KT. Out of a desire to base future programming decisions on evidence, CIHR undertook to critically evaluate the results of this KT funding program.

Knowledge Translation, Evidence-Based Practice, and You

Purpose of program:Traditionally, peer review was a closed process conducted only by individuals working in the research field. To establish a more integrated and patient-centered approach, one of Canada’s largest kidney research networks (Can-SOLVE CKD) has created a Research Operations Committee (ROC) that includes patients as key members. The ROC represents one way for achieving meaningful patient-oriented research (POR).Source of information:Can-SOLVE CKD, a network created as part of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR).Methods:The ROC consists of patients, physicians, scientists, Indigenous partners, experts in research methodology, and a member of Can-SOLVE CKD’s operational team. On an annual basis, Can-SOLVE CKD’s research teams provide the ROC with a review package, which incorporates information from patient engagement check-in calls and surveys, the project’s knowledge translation plan and products, and a progress report written by the project team. The ROC evaluates the review package and provides feedback and recommendations accordingly.Key findings:The transparent nature of the process, regular feedback and review, along with an overt accountability and scoring system, has been embraced by both patients and researchers. As a result of the ROC process, the number of patient leads for each project has grown over a 3-year period and more researchers have received POR and cultural sensitivity training.Limitations:While anecdotal evidence suggests this approach is beneficial for achieving POR, formal mechanisms of evaluation are currently lacking.Implications:This ROC framework ensures patients are active contributors throughout the research process and could be adopted by other organizations to achieve a more patient-centered approach to research.

Upregulation of smooth muscle Rho-kinase protein expression in human asthma.

RETIRED: A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary

To examine self-reported practices for obtaining ethics approval and reflections on ethics application processes among researchers who have conducted Aboriginal and Torres Strait Islander health and medical research. Cross-sectional online survey. Australian-based researchers who conducted research that included Aboriginal and Torres Strait Islander people or their data. Results from a 74-item online survey that participants completed, which included questions on demographics, ethics processes, perceptions of engagement in Aboriginal and Torres Strait Islander research, and barriers to and enablers of conducting Aboriginal and Torres Strait Islander research. Of 553 eligible researchers who commenced the survey, 439 (79.4%) answered all of the questions and were included in the analysis. A total of 327 participants (74.5%) had obtained ethics approval from an Aboriginal human research ethics committee (AHREC), 254 (57.9%) had obtained multistate ethics approvals and 270 (61.5%) had not participated in ethics training specifically for Aboriginal and Torres Strait Islander research. Participants were significantly more likely to report being very or extremely confident in managing the ethics application process if they had ≥ 6 years of research experience, had participated in training, had obtained ethics approval from an AHREC, or dedicated > 50% of their time to Aboriginal and Torres Strait Islander research. Participants acknowledged the importance of ethics approval processes in improving research practices, however they identified time and costs as barriers. Aboriginal and Torres Strait Islander participants identified that ethics processes do not always uphold Indigenous approaches or methodologies. Processes for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research do not meet contemporary research needs and would be strengthened by streamlining ethics application processes, reducing time and cost barriers, and enhancing cultural appropriateness. We join calls for the establishment of state-based AHRECs in every jurisdiction, and a national Aboriginal and Torres Strait Islander human research ethics committee to review cross-jurisdictional research.

This article draws on our participatory action research findings and interventions, such as advocacy and professional education, as applied during and after a large project focusing on Aboriginal mental health and safe medication management. The project was conducted by our research team and partners, community-controlled Aboriginal health services, and community leaders. The paper provides a discussion of major Aboriginal mental health issues gleaned from the literature, along with a discussion, and a conceptual model for conducting ethical Aboriginal health research, that has both evolved and guided us. It is hoped that this paper will assist nurses and other professional colleagues to work more effectively with Aboriginal peoples.