1. What are the benefits of joining CPCSSN?
CPCSSN works by gathering information from primary care practices across the country regarding service use and treatment. Participating practices have access to quality improvement tools including InQuIRE (Interactive Quality Improvement Reporting Environment) and DPT (Data Presentation Tool). These tools allow practices to visualize patient information and make comparisons across the clinic, network, and country.
Clinicians can learn details about their practice patterns (e.g. how often SSRIs are used in depression management for younger people). CPCSSN provides information on eight major chronic conditions and helps clinicians monitor risk factors for these among patients.
Participating clinicians can also collect Mainpro Credits.
2. 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 bread 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.
3. What do we need to do to 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
4. 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.
5. Why does CPCSSN need participating physicians to periodically re-consent to participate in the study?
Updated consent may be required when there are changes to the data being collected (e.g. additional variables), or ways that data are used (e.g. linking CPCSSN data to administrative data) which require research ethics approval. These changes will extend research capabilities and are needed to ensure that CPCSSN can contribute to evolving research across a broad range of conditions.
6. How does CPCSSN ensure privacy and confidentiality?
CPSSN does not extract directly identifying information – no patient or physician is identified in the database. All data, including indirectly identifying data (e.g. postal code), undergo a process of de-identification and transformation which results in fully anonymized data. Any identifying raw data are deleted. Anonymized data are stored on a secure server in a secure research environment.
CPCSSN additionally employs privacy analytics re-identification risk assessment and data anonymizing software prior to use by researchers. This software analyzes data for possible re-identification risk where certain fields contain fewer than five results and removes digits from postal codes.
7. 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 is proposing to link to 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. MSP data).
8. 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 file containing a unique CPCSSN identifier and patient health number – only authorized Population Data BC personnel and the CPCSSN BC data manager 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 will never have access to linkage files or any personally identifying information.
9. What can I tell my patients about data linkage?
CPCSSN does not directly collect identifying data. We are not focusing on individuals but 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.
10. 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.
11. 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 INQUIRE which are automatically available to sites.