Developing Standards for Patient-Reported Outcome Measures (PROMs) Collection and Reporting
e-Health ePoster Library. De Guia N. Jun 5, 2017; 167135; EP01.04
Ms. Nicole De Guia
Ms. Nicole De Guia
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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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