Advancing patient-reported outcome measures in Canada

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Treatment has been completed, the patient is ready to be discharged and it is expected he will have the desired outcomes following the full recovery period in the following days or months. But how do we know if the treatment resulted in the expected outcomes and health benefits? How can patients and their care providers better understand the effectiveness of treatment from the patient’s viewpoint?

More and more, the health system is shifting its focus to patient-centred care. Patient-reported outcome measures (PROMs) are measurement instruments, completed by patients, which provide information on aspects of health status, such as pain, functionality and mental well-being as determined by the patients. PROMs provide insight into the effectiveness of care from the patient’s perspective — and this information is essential to supporting a patient-focused approach to health care. Surveys are typically filled out pre- and post-treatment to assess the impact of health care services and procedures on the patients’ health status and quality of life.

“Understanding how effective services, such as a surgical intervention or treatment plan, are from the patient’s perspective gives a clear indication of what is working well and where improvements can be focused,” said Ellis Chow, a project lead at CIHI. “PROMs complement existing clinical and administrative data as well as patient-reported experience measures. This rich information can enhance existing data sources to better support and inform decision-making at multiple levels within the health system.”

How do PROMs and CIHI fit together?

PROMs have been identified by stakeholders as an area of high priority, including at the Consensus Conference held by CIHI and Statistics Canada in October 2014 and during stakeholder consultations.

A common approach to collecting and reporting PROMs data will be more cost-effective and timely, and provide much more comparable data (regionally, nationally and internationally) with which to drive health system enhancements. In 2013–2014, CIHI conducted an environmental scan of the Canadian and international PROMs landscape. It confirmed that while some regional-level PROMs initiatives have been developed, a standardized program for routine PROMs collection and reporting currently does not exist in Canada. This is where CIHI comes in.

In February 2015, CIHI hosted a pan-Canadian PROMs Forum for Canadian health leaders to explore considerations and opportunities for advancing PROMs in Canada. At this forum, stakeholders indicated a desire for CIHI to take a leadership role in assessing the potential for standardized administration and collection of PROMs data, and to provide recommendations. CIHI is collaborating with stakeholders to actively explore options for enhancing the availability of PROMs and coordinating a common approach to PROMs in Canada.

What’s on the horizon?

CIHI is collaborating with a range of stakeholders to determine how PROMs information can best be collected in a consistent manner and shared in a meaningful way with different users. This includes evaluating the types of reports and analyses that would be most helpful to service providers versus policy decision-makers.

Future steps for CIHI include

  • Launching PROMs demonstration projects in hip and knee replacements and end-stage renal care. These are areas where PROMs use is supported by the clinical community and where the value of PROMs can be illustrated.
  • Forming a pan-Canadian PROMs advisory committee to support collaboration and the development of work plans for advancing PROMs in Canada.
  • Recommending generic and condition-specific PROMs tools for use across Canada, recognizing the value of supporting local needs as well as regional and international comparisons.
  • Exploring opportunities to leverage existing infrastructure and initiatives to advance PROMs, such as the potential of submitting PROMs data to CIHI’s existing data holdings, including clinical registries as well as acute and ambulatory care databases like the Discharge Abstract Database (DAD) and the National Ambulatory Care Reporting System (NACRS).

Stayed tuned for updates on these activities. For additional information on PROMs and PROMs initiatives at CIHI, contact us at proms@cihi.ca.