Position Statement: Supporting access to data in electronic medical records for quality improvement and research

The value of electronic medical records

Family practices across Canada continue to adopt electronic medical records (EMRs) at a rapid pace. The proportion of family physicians using EMRs has quadrupled in recent years, growing to 85 per cent in 2017 from 16 per cent in 2004.¹ EMR uptake has been successful in part due to substantial government support, which has included publicly funded subsidies for family practices.

Among the strongest benefits of this technology is the ability to collect data on practice performance and health outcomes of patients served by family practices. Analyses of these data hold tremendous possibilities, allowing practices to measure progress through continuous quality improvement (QI) goals. Larger-scale collection of these data allows for the aggregation of data sets and measuring performance beyond the practice level. Strict privacy regulations ensure that patient data remain secure and confidential. Overall, QI and research benefit patients by way of guiding more appropriate and efficient care.

The undersigned organizations advocate for the implementation of EMRs, particularly when they can be shown to support QI, research, and high-quality and safe care for patients. These are defining pillars of the Patient’s Medical Home—a vision for the future of family medicine and patient-centred care as defined by the College of Family Physicians of Canada (CFPC).

To promote family practice QI and research, safe and appropriate access to data is necessary. Data need to be extracted from EMRs, analyzed and made accessible to health care providers, practices, as well as to approved stakeholders (such as researchers or aggregate data surveillance agencies like the Public Health Agency of Canada). Extraction, analysis, and reporting are currently facilitated through affiliations with trusted third-party entities such as the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) and Practice-Based Research Networks (PBRNs). The latter, of which there are about 16 across Canada, are groups of practices that pool data for research and QI purposes. For example, the University of Toronto Practice-Based Research Network (UTOPIAN)—the largest PBRN in Canada, with 1,400 family physicians participating—holds data on more than 500,000 patients. There are more than 1,100 practices across Canada that collectively provide data on more than 1.5 million patients to CPCSSN. These data are de-identified to respect patient privacy and confidentiality and linked to other administrative data sets, such as that of Ontario’s Institute for Clinical Evaluative Sciences.

EMR vendors may bar or limit access to EMR data. Examples include prohibitive fees for access to data, restrictions on third party extraction and analyses, or other limitations on the type or frequency of data extractions.

^{1 Canada Health Infoway. Use of Electronic Medical Records among Canadian Physicians, 2017 Update. Toronto, ON: Canada Health Infoway; 2017.}

The CFPC’s principles on access to EMR data

The CFPC advocates for reasonable access to EMR data to support and improve health care in Canada, based on the following principles:

• Data stored in EMRs are owned by patients. This has been recognized by governmental privacy agencies and the CFPC strongly supports this position.
• EMR vendors should not prevent, limit, or hinder approved third parties, including PBRNs, from extracting and analyzing data for the purposes of QI, research, and disease surveillance when practices approve and wish to participate in this activity.
• There should be reasonable rules governing qualification to extract data (e.g., abiding by ethical guidelines, adherence to data privacy and security standards, etc.) and family practices must have the freedom to choose who will extract their data without that choice being blocked or dictated to by the EMR vendor. The establishment of criteria or guidelines on who constitutes a trusted data extractor is encouraged.
• Practices use EMRs to manage patients’ information, paying start-up and maintenance fees for use of EMRs. The extraction of patient information from EMRs to improve the quality of care should not be at additional cost.
• The adoption of EMRs is subsidized through provincial and territorial public funding. Public funds should not then be required again to extract patient-owned data used to inform and improve care delivery.
• QI, family medicine research, and disease surveillance are a basic obligation of the health care system. Such data should be available as part of basic EMR licences and not subject to additional charges.