Suchergebnisse

Population Data BC (PopData) is an innovative leader in facilitating access to linked data for population health research. Researchers from academic institutions across Canada work with PopData to submit data access requests for projects involving linked administrative data, with or without their own researcher-collected data. PopData and its predecessor—the British Columbia Linked Health Database—have facilitated over 350 research projects analyzing a broad spectrum of population health issues. PopData embeds privacy in every aspect of its operations. This case study focuses on how implementing the Privacy by Design model protects privacy while supporting access to individual-level data for research in the public interest. It explores challenges presented by legislation, stewardship, and public perception and demonstrates how PopData achieves both operational efficiencies and due diligence.

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK).
Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends.
ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.
ConclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.

Introduction"The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research", recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom.
Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work:

Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research
Annette Braunack-Mayer/Felicity Flack: Surveys and citizens' juries: Sharing government data with private industry
Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data
Alison Paprica: Plain language communication informed by Health Data Research Network Canada's Public Advisory Council.

Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as "What is the most important thing for meaningful public engagement?" to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience.
ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion.
Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

Health care utilization by the elderly has increased during recent times. However, a number of investigators have indicated that this increase has had less to do with increasing numbers of elders than with increasing age-specific utilization rates for a variety of health services. 1985 and 1993 health data for British Columbia were used to examine changes in outpatient surgical utilization among the general population and changes in cataract surgical utilization among the elderly. Utilization increases in the older persons exceeded what would be expected on the basis of population increase. Furthermore, cataract surgery alone accounted for more than 29 percent of the entire utilization increase observed for outpatient surgery. Despite this increase, the average age at cataract surgery has not changed—seniors of all ages are much more likely to receive cataract surgery now than a decade ago. The authors' findings suggest that a part of this observed increase is due to operating on individuals at preoperative levels of better visual function.

Family or friend caregivers' concerns about assisted living (AL) residents' mental health are reflective of poor resident and caregiver mental health. COVID-19-related visiting restrictions increased caregiver concerns, but research on these issues in AL is limited. Using web-based surveys with 673 caregivers of AL residents in Western Canada, we assessed the prevalence and correlates of moderate to severe caregiver concerns about residents' depressed mood, loneliness, and anxiety in the 3 months before and after the start of the COVID-19 pandemic. Caregiver concerns doubled after the start of the pandemic (resident depressed mood: 23%–50%, loneliness: 29%–62%, anxiety: 24%–47%). Generalized linear mixed models identified various modifiable risk factors for caregiver concerns (e.g., caregivers' perception that residents lacked access to counseling services or not feeling well informed about and involved in resident care). These modifiable factors can be targeted in efforts to prevent or mitigate caregiver concerns and resident mental health issues.

IntroductionCaregivers of children with health problems experience poorer health than the caregivers of healthy children. To date, population-based studies on this issue have primarily used survey data.
ObjectivesWe demonstrate that administrative health data may be used to study these issues, and explore how non-categorical indicators of child health in administrative data can enable population-level study of caregiver health.
MethodsDyads from Population Data British Columbia (BC) databases, encompassing nearly all mothers in BC with children aged 6-10 years in 2006, were grouped using a non-categorical definition based on diagnoses and service use. Regression models examined whether four maternal health outcomes varied according to indicators of child health.
Results162,847 mother-child dyads were grouped according to the following indicators: Child High Service Use (18%) vs. Not (82%), Diagnosis of Major and/or Chronic Condition (12%) vs. Not (88%), and Both High Service Use and Diagnosis (5%) vs. Neither (75%). For all maternal health and service use outcomes (number of physician visits, chronic condition, mood or anxiety disorder, hospitalization), differences were demonstrated by child health indicators.
ConclusionsMothers of children with health problems had poorer health themselves, as indicated by administrative data groupings. This work not only demonstrates the research potential of using routinely collected health administrative data to study caregiver and child health, but also the importance of addressing maternal health when treating children with health problems.
KeywordsPopulation data, linked data, case-mix, children with special health care needs

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 a gap in terms of practical guidance about 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. The objective was to identify essential requirements for the establishment and operation of data trusts. Preliminary findings were presented during the meeting then refined as participants and co-authors identified relevant literature and contributed to this manuscript.

Results: Twelve (12) minimum specification requirements ("min specs") for data trusts were identified. The foundational min spec is that data trusts must meet all legal requirements, including legal authority to collect, hold or share data. In addition, there was agreement that data trusts must have (i) an accountable governing body which ensures the data trust advances its stated purpose and is transparent, (ii) comprehensive data management including responsible parties and clear processes for the collection, storage, access, disclosure and use of data, (iii) training and accountability requirements for all data users and (iv) ongoing public and stakeholder engagement.
Conclusion / Implications: Based on a review of the literature and advice from participants from 15 Canadian organizations/initiatives, practical guidance in the form of twelve min specs for data trusts were agreed on. Public engagement and continued exchange of insights and experience is recommended on this evolving topic.

Through Canadian and international perspectives, Bending the Cost Curve in Health Care explores the management of growing health costs in an extraordinarily complex arena. The book moves beyond previous debates, agreeing that while efficiencies and better value for money may yet be found, more fundamental reforms to the management and delivery of health services are essential prerequisites to bending the cost curve in the long run. While there is considerable controversy over direction and details of change, there also remains the challenge of getting agreement on the values or principles that would guide the reshaping of the policies, the structures, and the regulatory environment of health care in Canada. Leading experts from around the world representing a range of disciplines and professional backgrounds come together to organize and define the problems faced by policy-makers. Case studies from the United States, the United Kingdom, Australia, the Nordic countries, and industrialized Asian countries such as Taiwan offer useful reform experiences for provincial governments in Canada. Finally, common Canadian cost factors, such as pharmaceuticals and technology, and paying the health workforce, are explored. This book is the first volume in The Johnson-Shoyama Series on Public Policy, published by the University of Toronto Press in association with the Johnson-Shoyama Graduate School of Public Policy, an interdisciplinary centre for research, teaching, and executive training with campuses at the Universities of Regina and Saskatchewan