Until recently, your health data was primarily your Personal Health Information (PHI)—a record of your medical history that tracks your access to health care services using your health card number. Today, health data more broadly captures overall quality of life information about individuals, communities, and populations. This data can range from your chosen gender pronouns, primary language, accessibility needs, ethnicity, education, job—even data from your health apps and wearables—to clinical trials, research studies, public health statistics, surveys, and more. When connected and analyzed together, health data has the potential to not only improve your life, but also the lives of everyone across Ontario. https://www.youtube.com/watch?v=0mSre8PUTMM

The ability to access and update health data varies across the health care system as some providers still use paper records and not everyone in Ontario has access to the internet. Most people in Ontario cannot access their health data and/or record(s) unless their health care team provides them access. Only you and your health care team can access and update your health data. Some providers may provide you access (either in a printed or secured digital format) or update your records upon request while others may ask you to first complete forms called “Request to Access Personal Health Information”(https://www.ipc.on.ca/wp-content/uploads/Resources/up-phipa_accfrm_e.pdf) and “Request to Correct Personal Health Information”(https://www.ipc.on.ca/wp-content/uploads/Resources/up-phipa_corrfrm_e.pdf)). Depending on your health team, you may also be charged a fee (which varies across providers) to access your account. You may ask your health provider to waive the fee, especially if you feel that the fee is unreasonable. If they refuse, you may file a complaint (https://www.ipc.on.ca/resources/forms/file-a-complaint-about-an-accesscorrection-request-under-phipa/)to the Information Privacy Commissioner (IPC). https://www.youtube.com/watch?v=2m1TRAAJTv0

Most people’s health data is stored in several different places, in paper and digital form, across Ontario’s health care system. Hospitals, community clinics, medical labs, pharmacies, medical imaging facilities, long-term care facilities, and public health units are all examples of care providers that generate and store health data. Although some primary care doctors still use paper records/charts, most now use digital health software known as Electronic Medical Records (EMRs) to keep track of their patients’ health data. However, not every physician uses the same type of EMR and most EMRs cannot capture a person’s quality of life data. Ontario currently provides different digital options that store health data. For example, 16 hospitals in Toronto currently use MyChart, a digital patient health record that empowers patients to access and manage their own health data. https://www.youtube.com/watch?v=bboJpjwGifs

Your health data is protected by three types of safeguards: technical (e.g. digital security), physical (e.g. locked files), and administrative (e.g. legal policies), such as Ontario's health specific privacy legislation, the Personal Health Information Protection (PHIPA) Act (2004).(https://www.ontario.ca/laws/statute/04p03) Your health care providers—family doctors, nurses, hospitals, clinics, pharmacies, laboratories, long-term care homes, and even the Ministry of Health and Long-Term Care—(https://www.health.gov.on.ca/en/)are known as Health Information Custodians (HICs), who are legally bound by PHIPA to securely store and safely share your health data. https://www.youtube.com/watch?v=tsxa2BvV6Nw

Your health data is shared across your "circle of care" (health care team) to address your health needs. For example, your health provider may order a blood test from a laboratory for you, prescribe a medication from a pharmacy for you, or recommend a treatment from a clinic for you. To arrange that care for you, your health team will need to share snapshots of your health data. Anonymized health data—information that cannot be linked back to the specific person—is also shared when information is needed to improve the efficiency of the health care system (e.g., administrative data), identify patterns in health care access (e.g., Ontario Health Insurance Plan claims), understand diseases and illness (e.g., academic research), discover new treatments (e.g., clinical trials), provide targeted services and fund research (e.g., charities), and create new innovative health care technology (e.g., for-profit companies). Your health data is only shared when your health team needs to provide you care and when planners need information to enhance and create health services that ensure better care for all. https://www.youtube.com/watch?v=GqP_ydqk6yo

Harnessing the power of health data by sharing it for the public good will ensure people across Ontario lead healthier lives. When your health data is shared with you, you can take a more active role in understanding and managing your own care. When your health data is shared with your health team, you will experience more efficient and coordinated care. With real-time access to your "big picture" health data, your health team will also be more informed to design better diagnostic and care pathways for you. When your health data is shared with researchers, they can more quickly develop new medicines, treatments, and technology to advance your care. When health data from across the health system is shared and pooled together, health planners can identify patterns to transform Ontario's health system from a reactive (responding to illness as it happens) to a more proactive one where your health team can better anticipate your health needs and map your care journey. Sharing health data for good will modernize Ontario's health system and improve everyone's, both present and future, quality of life. https://youtu.be/8T2Qus06xJk