Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.

Introduction: Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure.

Approach And Aims: We convened an international team, consisting mostly of participants from Canada and the United States of America, to test and refine the original 12 min specs.

Quality improvement strategies for diabetes care: Effects on outcomes for adults living with diabetes.

Background: There is a large body of evidence evaluating quality improvement (QI) programmes to improve care for adults living with diabetes. These programmes are often comprised of multiple QI strategies, which may be implemented in various combinations. Decision-makers planning to implement or evaluate a new QI programme, or both, need reliable evidence on the relative effectiveness of different QI strategies (individually and in combination) for different patient populations.

Implemented machine learning tools to inform decision-making for patient care in hospital settings: a scoping review.

Objectives: To identify ML tools in hospital settings and how they were implemented to inform decision-making for patient care through a scoping review. We investigated the following research questions: What ML interventions have been used to inform decision-making for patient care in hospital settings? What strategies have been used to implement these ML interventions?

Design: A scoping review was undertaken. MEDLINE, Embase, Cochrane Central Register of Controlled Trials (CENTRAL) and the Cochrane Database of Systematic Reviews (CDSR) were searched from 2009 until June 2021.

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research.

Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction.

Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.

Introduction: Increasingly, the label "data trust" is being applied to repeatable mechanisms or approaches to sharing data in a timely, fair, safe, and equitable way. However, there is an absence of practical guidance regarding how to establish and operate a data trust.

Aim And Approach: In December 2019, the Canadian Institute for Health Information and the Vector Institute for Artificial Intelligence convened a working meeting of 19 people representing 15 Canadian organizations/initiatives involved in data sharing, most of which focus on public sector health data.

Conditionally positive: a qualitative study of public perceptions about using health data for artificial intelligence research.

Objectives: Given widespread interest in applying artificial intelligence (AI) to health data to improve patient care and health system efficiency, there is a need to understand the perspectives of the general public regarding the use of health data in AI research.

Design: A qualitative study involving six focus groups with members of the public. Participants discussed their views about AI in general, then were asked to share their thoughts about three realistic health AI research scenarios.

Changing research culture toward more use of replication research: a narrative review of barriers and strategies.

Objective: The aim of this paper is to review the literature on barriers to conducting replication research and strategies to increase its use and promotion by researchers, editors, and funders.

Study Design And Setting: This review was part of a larger meta-narrative review aimed at conducting a concept analysis of replication and developing a replication research framework. A combination of systematic and snowball search strategies was used to identify relevant literature in multiple research fields.

Replication Research Series-Paper 1 : A concept analysis and meta-narrative review established a comprehensive theoretical definition of replication research to improve its use.

Objectives: The aim of this study is to clarify the concept of replication research to improve its appropriate use by researchers, editors, research funders, and decision makers.

Study Design And Setting: We combined concept analysis and metanarrative review methods to synthetize knowledge on replication research from various scientific fields. We used multiple search strategies to identify the relevant literature published before April 2018.

Social licence and the general public's attitudes toward research based on linked administrative health data: a qualitative study.

Background: Both the research literature and headline news stories indicate that the public cares about how their health data are used. The objective of this study was to learn more about the general public's attitudes toward users and uses of linked administrative health data held by ICES in Ontario, Canada.

Methods: Eight focus groups, with a total of 65 members of the general public, were conducted in urban and northern settings in Ontario, Canada, in 2015 and 2017 using qualitative market research panels established by a market research/public opinion research firm.

Developing a framework for the ethical design and conduct of pragmatic trials in healthcare: a mixed methods research protocol.

Background: There is a widely recognized need for more pragmatic trials that evaluate interventions in real-world settings to inform decision-making by patients, providers, and health system leaders. Increasing availability of electronic health records, centralized research ethics review, and novel trial designs, combined with support and resources from governments worldwide for patient-centered research, have created an unprecedented opportunity to advance the conduct of pragmatic trials, which can ultimately improve patient health and health system outcomes. Such trials raise ethical issues that have not yet been fully addressed, with existing literature concentrating on regulations in specific jurisdictions rather than arguments grounded in ethical principles.

FROM TALK TO ACTION: POLICY STAKEHOLDERS, APPROPRIATENESS, AND SELECTIVE DISINVESTMENT.

Objectives: There is widespread commitment--at least in principle--to "evidence-informed" clinical practice and policy development in health care. The intention is that only "appropriate" care ought to be delivered at public expense. Although the rationale for an appropriateness agenda is widely endorsed, and methods have been proposed for addressing it, few published studies exist of contemporary policy initiatives which have actually led to successful disinvestment.

Seeing the forests and the trees--innovative approaches to exploring heterogeneity in systematic reviews of complex interventions to enhance health system decision-making: a protocol.

Background: To improve quality of care and patient outcomes, health system decision-makers need to identify and implement effective interventions. An increasing number of systematic reviews document the effects of quality improvement programs to assist decision-makers in developing new initiatives. However, limitations in the reporting of primary studies and current meta-analysis methods (including approaches for exploring heterogeneity) reduce the utility of existing syntheses for health system decision-makers.

Best strategies to implement clinical pathways in an emergency department setting: study protocol for a cluster randomized controlled trial.

Background: The clinical pathway is a tool that operationalizes best evidence recommendations and clinical practice guidelines in an accessible format for 'point of care' management by multidisciplinary health teams in hospital settings. While high-quality, expert-developed clinical pathways have many potential benefits, their impact has been limited by variable implementation strategies and suboptimal research designs. Best strategies for implementing pathways into hospital settings remain unknown.