What is CPCSSN?
The Canadian Primary Care Sentinel Surveillance Network (CPCSSN) gathers information from primary care practices across the country regarding service use and treatment. CPCSSN’s goals are quality improvement, chronic disease surveillance, and research.
Participating clinicians can access their own data and compare their patients to patients seen at their clinic (if multiple clinicians), in their health division, and across the province using the Data Presentation Tool (DPT). Quality improvement initiatives can be executed using the DPT.
CPCSSN will help facilitate the implementation of primary care networks (PCN) across BC by tracking the patients’ journey within the health care system. This will show health policy makers to how best to use/deploy healthcare resources to meet the needs of BC residents.
What are the benefits of joining CPCSSN?
CPCSSN will provide you with a rigorous quality improvement tool at the clinic level. CPCSSN technology provides reliable data back to you for purposes of quality improvement through the DPT. This allows visualization of patient information and to make comparisons across the clinic, health network, and province.
Clinicians can learn details about their practice patterns (e.g. how often are SSRIs prescribed for depression management in younger patients). CPCSSN has developed algorithms for 11 chronic diseases (e.g. depression, diabetes, osteoarthritis, Parkinson’s) which can assist in panel management and optimization. For example, using the DPT a clinician could easily examine which patients aged 65 years and older have not received an influenza immunization this year.
How is CPCSSN different from the Health Data Coalition (HDC)
CPCSSN and HDC are complementary systems used in BC with the shared goal of informing primary care practitioners about their practice population, and creating opportunities to improve patient outcomes in the community.
CPCSSN collects raw, de-identified and anonymized data from the entire EMR to a central repository. It provides a breadth of comparison with its pan-Canadian network to provide a national picture of chronic disease through patient record level data.
HDC collects data aggregates from a portion of their EMR data to compare data for quality improvements goals and to provide a broad view of population-level data.
As HDC completes construction of its architecture, CPCSSN and HDC will be exploring partnership opportunities to demonstrate the complementarity of both datasets to support quality improvement and patient-centred research.
What am I committing to in the longer term?
Once your practice has enrolled, data are automatically extracted from your practice’s EMR without any ongoing effort on your part. Periodically, CPCSSN may seek to make changes to the range of data collected or uses of collected data. In this situation, we will inform sites of potential changes and may seek your renewed consent to participate. At any time, practices can choose to end their participation in the study. Individual patients at participating sites can also opt out of CPCSSN and no data will be collected on these individuals.
Data extraction process
When a physician or practice join CPCSSN, how long until their data are extracted and returned to them in the DPT?
Once we have arranged access to the EMR, the data can be extracted, processed, and loaded into the DPT within about 1-2 weeks initially, then within a month for scheduled extractions.
After data extraction where are the EMR data stored?
Once the data are extracted (without any personal identifiers) the data are processed at UBC and stored in the BC-CPCSSN repository located in a secure data centre at UBC. This data centre meets all of British Columbia’s provincial requirements under the FIPPA legislation. The cleaned, anonymous data will be combined with national data at a central repository at Queen’s University in Kingston, ON.
The UBC research team, who have undergone confidentiality training, will also be able to view the de-identified data from your clinic. Only the data managers can see the raw extracted data. These staff can sign any additional confidentiality agreements used by your clinic.
What data are extracted from patient records?
CPCSSN does NOT extract all patient data. CPCSSN extracts mainly structured data (e.g. lab values, blood pressure) and not notes or PDFs contained within EMR. CPCSSN does NOT extract identifiable information—we take great pains to extract only de-identified data.
Data are extracted from specific fields (e.g. billing, health condition, reason for visit, lab, medications) and all patients are provided with a random CPCSSN ID.
When data are to be linked we perform another, independent extraction that contains PHN, name, birthdate (yyyy/mm/dd). Note this will be in a different file; the linkage data are always kept completely separate from the main data. Linking primary care data to other data sources (e.g. hospitalizations, ER visits, public health, etc) can be used for projects such as examining a patient’s journey through the health system.
What happens when you do data extraction refresh?
The most reliable and accurate method is to re-do the full data extraction at every refresh. This means all previously extracted data will be re-extracted along with any new data since the previous extraction. All data will all be re-processed and the clinician’s DPT will be updated accordingly.
How often is data extraction refresh done?
Currently at a national level, data extraction is done every 6 months. In BC, we aim for a data extraction refresh every 3 months. There could be opportunities for more frequent data extraction refresh on a case-by-case basis, if needed. In practice we find that it is not necessary to have the very latest data in order to be able to implement quality improvement initiatives.
What am I committing to in the longer term?
Once your practice has enrolled, data will be automatically extracted from your practice’s EMR – approximately every 3-6 months – and the DPT will be updated accordingly. If there are any changes to the type of data collected or uses of data, all practices will be informed of the changes and we would ask for your renewed consent to participate. At any time, practices can choose to end their participation in the study. Individual patients at participating sites can also opt out of CPCSSN and no data will be collected on these individuals.
Data Presentation Tool (DPT)
How do the EMR and DPT work together?
The DPT is designed to be used in conjunction with your EMR. Once you have enrolled in CPCSSN you will continue to use your EMR in the same manner. The DPT creates a ‘big picture view’ of your practice and will allow you to easily visualize patient demographics and sub-groups of patients.
Using a DPT secure web application, physicians can:
- Create a summary patient panel
- Compare patients with rest of clinic and across BC
- Do detailed searches at a patient level
- Save reports for re-use
- Re-identify patients for follow-up
How can I use the DPT to do address quality improvement initiatives?
Using the DPT you can answer quality improvement questions such as:
- What percentage of patients, 50 years and over, received screening for colon cancer with a hemoccult test within the past 24 months?
- What percentage of diabetic patients have had a foot examination in the last 2 years?
The DPT will highlight these specific patients and the clinician can work with their clinic staff to determine which patients should be contacted for follow up.
How can the DPT help in panel management?
- Empanelment: Physicians having an accurate and up to date list of ‘active’ patients. CPCSSN can easily search and display patients in the DPT who have not visited the physician over a given time frame (e.g. in the last year). This would enable clinicians to work with their MOA to flag patients who should be contacted to update their status and contact information.
- Panel clean-up: Physicians have accurate and up to date disease indicators and registries. CPCSSN can identify and classify 11 chronic diseases through the use of validated case-detection algorithms. The physician and MOA can work through these patients identified by CPCSSN and confirm that the EMR is up to date with accurate diagnosis and has been coded properly.
- Panel optimization: Physicians have accurate disease registries to support pro-active care. CPCSSN can facilitate preemptive patient care through its ability to identify patients with certain diseases who require additional recall or care planning. For example CPCSSN could highlight the number of patients with Diabetes Mellitus who have been recalled for a visit over the last 6 months (for well controlled) and over the last 3 months (for not well controlled). The physician could determine which of these patients should be contacted by the MOA for appropriate follow up. As the MOA continues to perform panel optimization, the DPT can be used to run regular reports, monitor demographic characteristics and chronic condition prevalence in the physicians practice which will facilities timely and pro-active patient care.
Consent and privacy
How does CPCSSN ensure privacy and confidentiality?
CPSSN does not extract any directly identifying information – no clinics, patients, or physicians are identified in the database. In addition, all data undergo a process of cleaning that removes any potential de-identification and transformation. Raw data are deleted. Anonymized data are stored on a secure server in a secure data centre.
What are patient expectations and how do they provide consent?
We have heard from multiple patients and the public that they expect we are using their data (de-identified) for the purposes of quality improvement and also for provision of quality of care (e.g. diabetics receiving care based on guidelines). Patients also expect that their data are used to generate knowledge for better healthcare services/systems. Patients expect us (clinicians, health systems, universities) to have in place appropriate systems to respect their privacy (de-identified) but be used for public good (e.g. contributing to a learning healthcare system).
Clinics will be provided with posters for waiting rooms and exam rooms as well as handouts to distribute to patients that explain the project. We could also provide an email message to be distributed to patients if this is of interest. The average number of visits to the practice for any one patient ranges is about 3-4 per year. Handing out patient information sheets for each patient that comes in should capture most patients within 6 months.
We have used the opt-out model of consent across BC and of the 110,000 patients who are part of BC CPCSSN, there have been 10 opt outs. We use the opt-out model across Canada (>2M patients) and the numbers in each province are similar. Quebec is in the process of switching to an opt-out model as well to decrease the burden on practices and the data extractors from collecting signed consent forms from patients.
What does the College of Family Physicians and Surgeons and Canadian Medical Protective Association (CMPA) think about the opt-out model of consent?
The College of Family Physicians endorses CPCSSN for their practice improvement initiative (PII). They helped CPCSSN to create the opt-out model when the project began over 10 years ago.
What is data linkage and how does it relate to CPCSSN?
Data linkage is a technique that associates two distinct data sources so that data that relate to the same individual, group, or unit can be combined for analysis. Without linkage, researchers do not get the full picture. Linking data allows for more exhaustive data sets and can enable research involving multiple variables that cannot be researched with one data source alone. For example, research regarding heart disease may require treatment information (e.g. medications, blood pressure) from primary care practices linked to administrative data regarding hospitalizations.
CPCSSN has linked CPCSSN-collected EMR data with complementary administrative health data so that complex conditions involving many variables can be researched. For example, a CIHR-funded study is examining frailty among elderly adults, which requires information on several physiological functions (e.g. blood pressure) in addition to information on use of health care services (e.g. hospitalizations).
How will CPCSSN data be linked?
Linkage of the data will be conducted by Population Data BC, which acts as a trusted third party that specializes in data linkage in BC. Data will be linked using a secure, encrypted file containing a unique CPCSSN identifier and patient health number – only authorized Population Data BC personnel and the CPCSSN BC data managers will have access to this file. This file will be used for linkage only in approved studies and will be stored separately and securely from other CPCSSN-collected data on a secure server. Researchers never have access to linkage files nor any personally identifying information.
What can I tell my patients about data linkage?
CPCSSN does not directly collect identifying data. We do not focus on individuals and are using CPCSSN data to understand patterns in groups of people. We have provided practices with updated posters and letters that can be distributed to your patients which indicate our intent to link data. As always, individual patients can opt out of CPCSSN and no data will be collected on these individuals.
What is an Information Sharing Agreement?
An Information Sharing Agreement (ISA) documents the terms and conditions of the exchange of personal information between organizations in BC. The Personal Information Protection Act authorizes the disclosure of personal information for research where such an agreement exists. In an ISA, CPCSSN agrees to comply with the Act and with CPCSSN policies and procedures regarding the privacy of personal information. The agreement requires CPCSSN to de-identify data and prohibits any subsequent disclosure of individually identifying data without the authorization of participating primary care providers. Section 21 of the Personal Information Protection Act provides more detail on the purpose and requirements of ISAs.
Can I conduct research using CPCSSN?
Yes – participating sites can request fully anonymized data sets from CPCSSN-BC with which to conduct research. These are in addition to quality improvement tools such as the DPT and INQUIRE which are automatically available to every sites.
Enrolment in CPCSSN
How do I join CPCSSN?
Any primary care practice using electronic medical record technology is eligible to enroll at no cost to the practice. Enrolment is easy and requires completion of a consent form, a brief questionnaire, and granting the BC-CPCSSN data manager access to EMR data from your practice. Let us know if you are interested in participating by emailing firstname.lastname@example.org.