We are pleased the New Digital Research Infrastructure Organization (NDRIO) is seeking input to assess the needs of Canada’s Digital Research Infrastructure community and delighted that NDRIO is interested in traditionally under-represented participants in the Canadian research ecosystem. Healthcare systems across Canada are redesigning services for better care integration across sectors, improving patients’ experiences and quality of care, and reducing healthcare costs. Patient-reported experience measures and outcomes are critical in shaping and evaluating those efforts but are missing from most datasets available for research, system planning and management. This is especially true for primary care where most care is provided to Canadians. Until recently it was too difficult and too expensive to collect and link these data.
The Canadian Primary Care Information Network (CPIN) solves these problems. https://en.cpin-rcip.com/ CPIN approaches the challenge through the primary care system as it constitutes the first point of contact between patients and the healthcare system. CPIN is a data collection infrastructure for quality improvement and research. CPIN provides primary care practices with the ability to efficiently communicate with their patient populations and collect data on patient experiences by email or text messages. Because patients are asked to complete surveys by their own personal physician or nurse practitioner the response rates are high. In a pilot study involving more than 100 practices in three provinces the patient response rate was greater than 60%.
CPIN’s development was paid for by CIHR funding and is currently being used in five research projects in three provinces. The real value of CPIN will be realized when it is used by thousands of practices across Canada. To facilitate adoption, CPIN has been built as a practice tool that primary care practitioners will want. It allows family physicians to efficiently share short health information messages with segments of their patient populations. For example, the practice can send public health messages to their patients informing them about where to get the Flu shot, how they can be tested for COVID-19 or how to get vaccinated against COVID when it is available. CPIN provides a bilingual library of validated surveys that the family physician or nurse practitioner can distribute by email or text message to targeted segments of the practice population in a fully automated fashion. It aggregates the patient responses and feeds them to the providers in a way that allows them to understand their performance. CPIN also aggregates data across practices enabling peer comparisons when reporting back to the practices. CPIN then assists the providers to formulate a quality improvement plan and to monitor their efforts over time to improve this aspect of their practice. CPIN helps family physicians to meet their continuing professional development requirement that they conduct a quality improvement study using data from their own practice each year. It is compatible currently with over 10 different Electronic Medical Records across the country. Enabling a learning primary health care system in this way is an important facilitator as health care systems oriented towards primary care have better health outcomes, are more equitable and cost less.
Standardized data aggregated across practices from across the country creates a rich data set for research purposes and is likely to create a larger and more representative dataset less expensively than most alternatives to measuring patient experience. Patients are asked by CPIN to consent to their survey question answers being used in research. Patients are reassured that their responses are de-identified and securely stored at the Institut du Savoir at the Montfort Hospital in Ottawa. Access to the data by researchers will be managed by a not for profit Board of Directors.
In October 2020, CPIN and the College of Family Physicians of Canada (CPFC) initiated a feasibility study that will assess the potential for broad scale uptake of CPIN services among Canada’s family physicians. With CFPC support, a test group of CFPC members will use CPIN services at a subsidized rate of $21 per family physician per month. This feasibility study will help us gauge how family physicians, and their patients, would benefit from CPIN services, while exploring possibilities for ongoing collaboration between CPIN and the CFPC.
CPIN allows practices to offer an attractive new service offering feedback to the practice and key information about their health to their patients and increase the operational efficiencies of running their practices. CPIN empowers patients by keeping them informed and allowing them to contribute to the design of a healthcare system that reflects their needs.
It is our hope that NDIRO will assign priority to digital infrastructures that support the delivery of primary care services to patients while creating a research and surveillance database for health services researchers. This infrastructure is used to support the largest share of health care delivery, and the broad-scale integration of patient experience data into primary care systems will improve health care for communities across Canada. The suite of services offered by CPIN produces a compliment to existing routinely collected health data available to researchers. It deserves stressing that the high (60%) response rate to the surveys by patients includes their consenting for their survey responses to be linked to health administrative datasets before being de-identified.
This white paper was prepared by William Hogg1,2,3, Sharon Johnston3, Doug Archibald3 and Sabrina Wong4,5.
1Vice-Président associé recherche et Directeur Scientifique Institut du Savoir par intérim, Hôpital Montfort
2Professor and Director Faculty Affairs Department of Family Medicine, University of Ottawa
3Scientist L’Institut du Savoir, Hopital Montfort and member of the Department of Family Medicine, University of Ottawa
4 Professor, UBC School of Nursing and Centre for Health Services and Policy Research
5Co-Director of the BC Primary Care Sentinel Surveillance Network
The contact author is Dr. William Hogg who can be reached at firstname.lastname@example.org