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Nicole De Guia



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    EP01 - Evaluating Application Implementations (ID 40)

    • Event: e-Health 2017 Virtual Meeting
    • Type: e-Poster
    • Track: Clinical and Executive
    • Presentations: 1
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      EP01.04 - Developing Standards for Patient-Reported Outcome Measures (PROMs) Collection and Reporting (ID 342)

      Nicole De Guia, Canadian Institute for Health Information; Toronto/CA

      • Abstract
      • Slides

      Purpose/Objectives: The patient perspective is a missing dimension in the reporting of health outcomes, which historically has been based on clinical and administrative data. Canada does not currently have a standardized program for the routine collection and use of patient-reported outcome measures (PROMs) data. Working collaboratively with a wide variety of stakeholders, the Canadian Institute for Health Information (CIHI) is developing a pan-Canadian PROMs program focusing on standards, data collection and reporting for different audiences in the health care system, including patients.

      Methodology/Approach: In 2013-2014, CIHI performed an environmental scan of the PROMs landscape in Canada and internationally. In 2015, CIHI held a pan-Canadian PROMs Forum to advance the development of PROMs information across Canada. A series of recommendations arose from the Forum, including the identification of three clinical areas (hip arthroplasty, knee arthroplasty and renal care) for PROMs work. Demonstration projects have been launched in these areas with support by the clinical community and to illustrate the value of PROMs. Through working groups facilitated by CIHI, consensus was gained on condition-specific PROMs tools for the selected clinical areas and further work will include the development of standards for survey administration (covering timing, frequency, and survey modes) based on best practices and pragmatic considerations. An additional working group is focusing on the selection of a common generic PROMs tool that could be applied across sectors and clinical groups. In parallel, CIHI is investigating the applications of PROMs in terms of reporting for clinicians, administrators, health system policy makers, and patients.

      Finding/Results: CIHI’s clinical area working groups have reached consensus on condition-specific PROMs tools: Oxford Hip Score (hip replacements), Oxford Knee Score (knee replacements) and Edmonton Symptom Assessment Scale (renal care). Working groups are focusing on survey administration standards, taking into account the varying implementation abilities across different jurisdictions and centres. CIHI is also developing a minimum data set standard for the collection of PROMs data in each of these areas. Work is underway to identify a generic PROMs tool as the national standard, with the Veterans RANDS 12-item Health Survey (VR-12) and the EuroQol Group EQ-5D as candidates. The recommended generic tool would be administered in conjunction with the condition-specific tool or on its own for broad health care sector or population surveys. Working in collaboration with stakeholders, CIHI will develop key PROMs measures that will support use of the data for varying audiences within health care systems. CIHI plans to make facility-level comparative data available to health system users in a manner that enriches current administrative and clinical outcomes reporting. PROMs data can also be used to support provider-patient discussions regarding expectations of outcomes related to care and specific patient characteristics. Development of Canadian population norms would support comparisons of individual patient results against these aggregate norms.

      Conclusion/Implication/Recommendations: CIHI will continue to work with stakeholders to develop standards in PROMs tools and data collection for use in improving outcomes and the effectiveness of the health care systems.

      140 Character Summary: CIHI is developing a pan-Canadian PROMs program, focusing on standards, data collection and reporting for a range of health system users, including patients

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    EP07 - TeleHealth Models with Big Data Flavour (ID 47)

    • Event: e-Health 2017 Virtual Meeting
    • Type: e-Poster
    • Track: Clinical and Executive
    • Presentations: 1
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      EP07.06 - Integrating Medical Device Product Information into CIHI’s Hospitalization Database (ID 350)

      Nicole De Guia, Canadian Institute for Health Information; Toronto/CA

      • Abstract
      • Slides

      Purpose/Objectives: The medical device industry is an innovative health care marketplace that is regulated less stringently than drugs under federal legislation in Canada and internationally. Currently there is a large information gap in terms of which devices provide the best outcomes with good value in terms of device pricing as well as the need to perform longer-term surveillance of medical device safety. The Canadian Institute for Health Information (CIHI) is expanding the capability of its primary hospitalization database, the Discharge Abstract Database (DAD), to capture medical device product information, beginning with hip and knee replacements, in order to support these patient safety and procurement agendas.

      Methodology/Approach: CIHI has managed the Canadian Joint Replacement Registry (CJRR), Canada’s only national medical device registry, since 2001. This Registry captures hip and knee replacement product (barcode) information to support the monitoring of device performance and related outcomes. CIHI is working to integrate the capture of the CJRR information via the DAD, which will directly associate the product information with the associated medical-device related hospitalization. Activities undertaken as part of this initiative included an assessment of the CJRR data elements vis-à-vis the DAD, comparisons with international arthroplasty registries, and consultations with clinical and classifications experts, as part of a multi-disciplinary team that also included IT business analyst, architecture, and developer staff.

      Finding/Results: As of April 2018, the DAD will include additional data elements to capture detailed manufacturer and product number information associated with each hip and knee replacement device. The DAD will also have the enhanced ability to received scanned barcode information and parse out requisite information, a key functionality given that the current lack of standard barcode formats in the industry. These additions lay the groundwork for future medical device product capture. Several provinces in Canada have mandated CJRR collection and it is expected that this integration will increase the reporting to support device surveillance and procurement decisions. For instance, product characteristics, such as bearing surface, are known to influence the revision rates of joint replacement surgeries. Early revisions need to be reduced, as such surgeries are significant procedures for the patient, take longer for recovery, and are costly to the health care system. These medical device products have varying costs negotiated through private procurement contracts; under the current pressures to reduce health care costs, it is important that their relative outcomes be considered during purchasing arrangements.

      Conclusion/Implications/Recommendations: An estimated half a million medical-device related hospitalizations and procedures occur in Canada annually, incurring significant costs in the health care system. By building in the capability for medical product device capture directly linked with the patient hospitalization record, CIHI is enhancing its ability to provide outcomes data in a manner that supports the work of regulatory and supply chain/procurement agencies.

      140 Character Summary: CIHI will be capturing medical device product information in its primary hospitalization database to support improvements in outcomes data.

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