Evolution-revolution-devolution

From 1993 to 2009 the University of Manitoba (UM), the Regional Health Authorities of Manitoba (RHAM), and the Manitoba Health Department signed affiliation agreements that changed the access to knowledge-based information for health professionals. These agreements transferred the management and delivery of library service from the home organizations to the UM Libraries. This three-part paper describes the events that led to the evolution of change in health information access in Winnipeg, subsequent revolutionary changes in the nature of the services, and their eventual devolution due to a significant array of unexpected challenges.

Beyond traditional library spaces: the practicalities of closing hospital libraries and opening a virtual library

The formation of the University of Manitoba Health Sciences Libraries (UMHSL) was the result of signing consecutive agreements over a period of 24 years between the University of Manitoba (UM) and Winnipeg area hospitals, now collectively known as the Winnipeg Regional Health Authority (WRHA). In 2017, the UMHSL included the UM's Neil John Maclean Health Sciences Library (NJMHSL) and eight hospital and health centre libraries located in the city of Winnipeg. In 2018, all the hospital and health centre libraries closed and the UML opened the rebranded WRHA Virtual Library. This article describes the complications and lessons learned while closing the hospital libraries and opening a virtual library service to a distributed health care system with diverse clinical and educational needs.

Creation of First Nations Health Profiles Through Data Linkage in Manitoba

BackgroundFirst Nation peoples (FNs) were not able to identify themselves within administrative datasets due to lack of FNs identifiers, which perpetuates a pan-indigenous approach in advocacy and evaluation capabilities. Linking databases improves the quality and accuracy of FNs health data and offsets the burden of survey fatigue in communities. Creating community profiles helps FNs in identifying health status priorities for communities, Tribal Council and other geographically defined areas. MethodsA resolution was passed in September 2017 to link Indian Status Registry (ISR) file with Manitoba Health Registry, with First Nations Health and Social Secretariat of Manitoba (FNHSSM) and Health Information Research Governance Committee (HIRGC) oversight to create a Key Linked file which has First Nations specific information. Encrypted Personal Health Information Numbers (PHINs) were added to the Key Linked file to create a Manitoba First Nations Research file which is linkable to other databases. Information Sharing Agreements (ISA) have been developed with federal and provincial governments to mandate the processes for data linkage. ResultsA resolution was passed in September 2017 to link Indian Status Registry (ISR) file with Manitoba Health Registry, with First Nations Health and Social Secretariat of Manitoba (FNHSSM) and Health Information Research Governance Committee (HIRGC) oversight to create a Key Linked file which has First Nations specific information. Encrypted Personal Health Information Numbers (PHINs) were added to the Key Linked file to create a Manitoba First Nations Research file which is linkable to other databases. Information Sharing Agreements (ISA) have been developed with federal and provincial governments to mandate the processes for data linkage. ConclusionData Linkage is a key process to assert self-determination, strengthen FNs data governance and achieve Data Sovereignty. Linking databases creates opportunities for FNs to access accurate data that will assist their Nations to lead their own health research and program evaluation that are driven by their own needs and priorities.

A81 POST COLONOSCOPY COLORECTAL CANCERS IN MANITOBA: A POPULATION-BASED ANALYSIS

Background Recent consensus guidelines from the World Endoscopy Organization (WEO) recommend all jurisdictions report unadjusted rates of post colonoscopy (PC) colorectal cancers (CRC). Until recently, prior reports have mostly focused on PC-CRC in the CRC screening age groups. Aims We evaluated the rate and predictors of PC-CRC in the adult population for the province of Manitoba from 1990 to 2016. Methods Individuals 18+ years at CRC diagnosis were identified from the Manitoba Cancer Registry. Colonoscopies in the 3 years preceding CRC diagnosis were identified via linkage to Manitoba Health (MH) physicians billing claims. CRCs were classified, based on WEO recommendations, as: (1) detected CRC (colonoscopy up to 6 months before CRC diagnosis) and (2) PC-CRC-3y (colonoscopy 6–36 months before CRC diagnosis). Generalized linear models with generalized estimating equations (to adjust for clustering within endoscopy physicians) were used to test for differences in rates over 3-time intervals (1990/91 – 1999/00; 2000/01 - 2009/10; 2010/11 – Dec 31 2016), provincial region of performance of colonoscopy and identify other associations from the MH data. Results Overall, 10.5% of the 16,639 CRCs diagnosed in the study period and with colonoscopy in the preceding 3 years were PC-CRC-3y. CRCs diagnosed between April 2000 and March 2010 were more likely to be PC-CRC-3y than those diagnosed between April 2010 and December 2016 (odds ratio [OR] 1.18; 95% confidence interval [CI]: 1.03–1.37). Female sex (OR for male: 0.86; 95% CI: 0.77–0.94), IBD diagnosis (OR 3.04; 95% CI: 2.56–4.52), prior CRC (OR 5.41; 95% CI: 4.61–6.34), prior colonoscopy (OR 2.10; 95% CI 1.88–2.36), diverticulosis (OR 2.39; 95% CI: 2.16–2.6), colonoscopy by GP (OR: 1.62; 95% CI 1.16–2.26 vs. surgeons) were associated with increased odds of PC-CRC-3y. There were no regional differences, and no effect of colonoscopy volume or age greater than 75 (or lower than 50). Conclusions In Manitoba, the PC-CRC-3y rate decreased slightly in recent years. The study results of large number of PC-CRC-3y along with only a slight decrease in rates over the years, support calls for root cause analysis to evaluate individual cases of PC-CRC. An initial focus could be the groups with increased risk of PC-CRC. Funding Agencies Manitoba Health

Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

Linking First Nations data to administrative health data within Manitoba

IntroductionFirst Nation peoples (FNs) were unable to track their own health care trends due to limitations in datasets. The key linked file enables FNs to identify themselves within administrative datasets and work with Crown governments to bring equity in all services and departments to support FNs understanding of wellness. Objectives and ApproachFirst Nations Health and Social Secretariat of Manitoba (FNHSSM) was established by 2013 resolution of Assembly of Manitoba Chiefs (AMC) and incorporated in 2014. FNHSSM leads and supports research according to FNs criteria approved by the Chiefs in Assembly. Information Sharing Agreements (ISA) have been developed with federal and provincial governments to mandate the processes for data linkage. The ISA allows Indian Status Register (ISR) data of Department of Indigenous Services Canada (DISC) to be transferred to FNHSSM to provide oversight, and link to Provincial Personal Health Information Numbers (PHINs) to create the de-identified, scrambled, and encrypted Key Linked file. ResultsPrevious linkages were done in early 2000s with FNs approval and oversight. The 2018 linkage is the first time that ISAs have been formally developed. ISA-1 is between FNHSSM and Manitoba Health Seniors and Active Living (MHSAL) to create Key Linked file. ISA-2 is between FNHSSM, MHSAL and Manitoba Centre for Health Policy (MCHP) at University of Manitoba, to create the FNs Research File. This research file can only be accessed with application to and approval by the MFNs Health Information Research Governance Committee. This key linked file allows FNHSSM to prepare community health profiles specifically and only for each FN, to respect FNs Data Governance under Chief and Council. A regional report on Manitoba FNs will be created for all MFNs, FNHSSM and MHSAL. Conclusion/ImplicationsLinking datasets helps to strengthen FNs data governance in re-building nations, recognizing FNs inherent right to self-determination. Linking files help to provide meaningful data to advocate for FNs rights and access to the resources and social determinants of health needed to achieve equity in Manitoba.

Lower prevalence of multiple sclerosis in First Nations Canadians

BackgroundWe compared the incidence and prevalence of multiple sclerosis (MS) between First Nations (FN) and non-FN populations in Manitoba.MethodsWe applied previously validated algorithms to population-based administrative (health claims) data from Manitoba, Canada, to identify all persons with MS from 1984 to 2011. We identified FN individuals using the Municipality of Registration field held at Manitoba Health. We compared the incidence and prevalence of MS between the FN and non-FN populations using negative binomial models.ResultsFrom 1984 to 2011, 5,738 persons had MS, of whom 64 (1.1%) were of FN ethnicity. The average annual incidence rate per 100,000 population was 8.15 (95% confidence interval [CI] 5.98–11.1) in the FN population and 15.7 (95% CI 15.1–16.3) in the non-FN population (incidence rate ratio 0.52; 95% CI 0.38–0.71). In 1984, the crude prevalence of MS per 100,000 population was 35.8 (95% CI 14.9–86.1) in the FN population and 113.3 (95% CI 106.3–120.8) in the non-FN population. Between 1984 and 2011, the age-standardized prevalence of MS increased by 351% to 188.5 (95% CI 146.6–230.4) in the FN population. In contrast, the prevalence of MS per 100,000 general population increased by 225%–418.4% (95% CI 405.8–431.0).ConclusionsThe incidence and prevalence of MS are twofold lower in the FN population than the non-FN population. Nonetheless, the prevalence of MS in FN Manitobans is higher than in other indigenous populations outside Canada. Given reports of more rapid disability progression among FN Canadians with MS, and the rising prevalence of MS in this population, attention should be directed to the needs of this population.

Protocol for the HAPPY Hearts study: cardiovascular screening for the early detection of future adverse cardiovascular outcomes in middle-aged and older women: a prospective, observational cohort study

IntroductionEfforts to identify individuals at a higher risk for adverse cardiovascular outcomes focus on traditional risk factors, such as age, sex, smoking status, blood pressure and and cholesterol; however, this approach does not directly assess cardiovascular function and may underestimate the risk of experiencing adverse cardiovascular outcomes in women. This prospective, observational cohort study will examine the ability of the Heart Attack Prevention Program for You (HAPPY) Hearts screening protocol, a series of non-invasive procedures to identify middle-aged and older women who are at an elevated risk for experiencing an adverse cardiovascular event in the 5-year period after screening. The predictive value of the HAPPY Hearts protocol will also be compared with the Framingham Risk Score to determine the sensitivity for estimating risk for an adverse cardiovascular outcome.Methods and analysisOne thousand women 55 years of age or older will be recruited to be screened by the HAPPY Hearts protocol. This involves the cardiovascular assessment of resting blood pressure, blood pressure response to 3 min of moderate intensity exercise and large and small arterial elasticity. The participants will be classified into risk categories based on these measures. The incidence of the following adverse cardiovascular outcomes will be assessed in the 5-year period after screening in both groups: ischaemic heart disease, acute myocardial infarction, stroke, percutaneous coronary intervention, coronary bypass surgery, congestive heart failure and new hypertension.Ethics and disseminationInformation gathered in this research will be published in peer-reviewed journals and presented in a programme evaluation report to inform Manitoba Health and key stakeholders about the outcomes of the study. The University of Manitoba Health Research Ethics Board has approved the study protocol V.2.0, dated 29 September 2014 (H2014:224).Trial registration numberNCT02863211.