FAQ

The Canadian Personalized Healthcare Innovation Network (CPHIN) is a non-profit organization who wants to make health data accessible to patients, researchers, and clinicians across the country. We bring together healthcare system stakeholders to conduct personalized healthcare research programs.

The Founding Members of CPHIN are the University of Waterloo, Roche Canada, Amgen, and Janssen.

No. CPHIN is a not-for-profit that partners with entities in both the public and private sectors.

CPHIN aims to co-create a data-driven healthcare system that will accelerate personalized healthcare for Canadians.

CPHIN will enable growth of personalized healthcare in Canada, as patients can use data to help them make their own health decisions in partnership with their doctors and to receive treatments that are customized to their genomic data. 

The benefits of integrated data programs will be felt across the country. Kick Start Programs will help demonstrate that integrated data will lead to more equitable care because patients and doctors will no longer be limited by their geography. 

By transforming healthcare system to be more data-driven, patients will receive better, more tailored treatments from both rural and urban regions in Canada. Patients and doctors will be able to make informed, data-driven decisions about healthcare.

Doctors and clinicians will compare similar cases to make diagnoses and devise treatment plans faster and more accurately, ensuring less waste and better outcomes.

Data privacy is a branch of information security that deals with the proper use and handling of data. This includes consent, notice, sensitivity, and regulatory concerns.

Practical data privacy problems often revolve around whether or how data can be shared with third parties, if data can legally be collected or stored, and regulatory restrictions, such as GDPR.

Health data is governed by PIPEDA federally and by provincial privacy laws. Each province and territory has different personal information and personal health information laws that govern these data. 

These laws dictate how health data is retained, logged, handled, and disclosed. 

CPHIN will keep data at their source and within their jurisdictions. These data will already be compliant with their jurisdiction’s privacy laws. This unique approach allows CPHIN’s Kick Start Programs that use data to be compliant overall.

CPHIN operates under four principles in regards to data privacy: (1) we can learn from data without risking patient privacy, (2) data will remain in its identifiable state at its source, (3) data will be anonymized and aggregated through the Kick Start Program platforms, and (4) CPHIN’s Board will develop a data governance plan based on international privacy and security standards.

CPHIN takes data privacy very seriously and will adopt a Privacy by Design approach and undertake privacy risk management activities, such as establishing a governance framework; ensuring proper legal analysis; enabling privacy awareness training and consent management as applicable; privacy preserving data mining; alerts; incident response; and security risk management activities. 

CPHIN has partnered with the following privacy advisors:

 – Dr. Ann Cavoukian, Board Member of the Global Privacy and Security by Design Centre

 – Dr. Khaled El Emam, founder of Privacy Analytics Inc and Senior Scientist at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute

 – Carole Piovesan, co-founder and partner of INQ Data Law and advisor to the Ministry of Innovation, Science and Economic Development

 – Mary Jane Dykeman, co-founder and partner of INQ Data Law

Yes, all doctors will be able to participate in Kick Start Programs, regardless of their location.

If an organization would like to support CPHIN, they can write a letter of support or discuss partnership opportunities if they are interested in leading Kick Start Programs. 

If an individual is supportive of CPHIN, they can contact their elected representatives and tell them that they should support the development of CPHIN and its goal to transform the healthcare system.

Researchers (industry, private sector, public sector, clinicians, etc.) will present CPHIN a Kick Start Program proposal, which will be vetted by CPHIN’s Scientific Advisory Board. Principal investigators will work with CPHIN to (1) determine level of funding needed and level of CPHIN administrative support and (2) to explore partnerships with others in the CPHIN network.

CPHIN will not fund Kick Start Programs at its start, but it will work with Principal Investigators and Kick Start Program teams to explore funding opportunities within the CPHIN network.

Genomic data refers to the genome and DNA data. They are used in bioinformatics for collecting, storing, and processing the genomes of living things. The aim of genomic data analysis is to determine the functions of specific genes.

Data de-identification is a computing standard in which sensitive medical and identifiable personal information contained in electronic health records can be scrubbed so that it is anonymized.

Data that is integrated in Kick Start Programs will remain at the custodian’s location and will not be hosted in a central location.

Essentially, data from source institutions will be held in secure staging areas at each site, and each Kick Start Program platform will be able to send queries to each staging area.

Patients will continue to own their own data, and provinces, territories, and institutions will remain the custodians.

Data privacy is governed by PIPEDA federally, and provinces have differing legislation pertaining to the health data privacy as well. Currently all of the provinces permit the free use of de-identified data and allow it to be used for research purposes, which is in line with CPHIN’s objectives. 

We are committed to developing policies which comply with the relevant legislation that governs health data and electronic health records. Expert advisors will help lead the effort in shaping CPHIN policies for data privacy, security, and sharing that will ultimately allow for coordinated research efforts using data while ensuring the protection of patient privacy.

CPHIN’s approach to the collection, sharing, and control of health data is twofold: (1) work collaboratively with all partners to build Canada’s first health data trust and (2) comply with all provincial and territorial privacy laws, while at the same time, engaging with governments, privacy experts, and stakeholders to develop evidence to support the modernization of Canada’s privacy policies.

Additionally, CPHIN and its privacy advisors will also support the federal and provincial governments as they look to update and reform privacy legislation, and the Kick Start Programs will be an evidence-generating tool as governments explore new policies.