As a patient in the Ontario medical system, it is extremely difficult to get access to the data used to guide your healthcare journey. Despite hospitals making an attempt to give patients access to this information, this requires multiple different platforms, as there is a significant disconnect between different healthcare providers depending on where they work - creating information silos. This significantly slows down the movement of relevant health information between providers caring for a patient, while simultaneously precluding an individual from accessing their own data, which they are entitled to through PHIPA.
What it does
ConnectPHR is built on a decentralized data cloud with the purpose of giving patients access to their health data and empowering them to lead their own healthcare journey. Anyone with a valid Ontario health care number can sign up for an account that uses their name, OHIP number, and date of birth as authentication factors. Each account is associated with a personal identifier that can be used by healthcare practitioners to upload encrypted, highly secure patient health data, lab results, medical images and all other information that pertains to the patient’s health. The patient can then access this data through their personal identifier, anytime and anywhere, and share it with healthcare practitioners that require it to provide treatment. This serves a twofold purpose as it allows patients to view their health data and also improves health care delivery by integrating medical records from multiple points of care.
How we built it
The network behind ConnectPHR will be created using the IPFS protocol, connecting healthcare providers together. Each provider on the network is known as a verified "node" and will require a "swarm key" to access the network. Each patient account on the network will have an associated Unique Identifier (UID) created from a hash of their name, OHIP number, and date of birth. Verified nodes will require the UID for access to patient accounts to view their past records and add new interactions (doctor's visits, blood work reports etc.). The protocol saves interactions by breaking the data into "blocks". Each block is hashed and multiple copies are saved to different nodes to ensure redundancy and security. Each interaction will have a UID created from its hashed blocks. When a user requests a file from the network, they will require the UID to access it.
In order to bring existing patient data into ConnectPHR from existing EHR systems a custom API will have to be developed to ensure the process is efficient. This will also allow for transition between systems without downtime as the API can be used while everything is online.
Challenges we ran into
The main challenge we faced in tackling this problem was finding the right technology to build a secure platform for patients to have access to their own data without it interfering with the hospital/medical clinic workflow. We believe a decentralized cloud is the perfect solution due to the ease with which data can be uploaded and the security it provides to this information. Additionally, this platform enables data sharing regardless of which Electronic Medical Record system is used by the clinic, which is the main hindrance when it comes to sharing of information between healthcare providers. Ultimately, ConnectPHR allows for immediate uploading of health record data to the patient’s secure decentralized storage account, empowering the patient to view their information and enabling clinics to share crucial health data between points of care to improve patient care and decrease stressors.
Accomplishments that we're proud of
Canada Health Infoway has led the way in building a theoretical framework for a national electronic personal health record platform. We are proud to have come up with a creative solution, using new technology based on a decentralized data cloud, to a problem the Canadian patient and the fragmented health care system have been facing for a very long time.
What we learned
As we developed a framework for how our system could work, we used our individual strengths to guide one another through the details of each component of building connectedPHR. Together we learned i) ethical and legal restrictions that have to be placed in a national electronic personal health record platform, ii) prototyping and designing a future app, iii) the IPFS protocol and how it can be applied to build a secure, decentralized system allowing rapid communication between patient and health care providers.
What's next for connectedPHR
The next step would be to implement what we learned from the IPFS protocol to build our decentralized cloud storage system. Following that, it will be imperative to add accounts to our platform, which can be accessed only through our rigorous authentication protocol (name, date of birth and OHIP number) and test out the exchange of data. Once the platform has been build, it can be tested out in a small family medicine clinic to test out the viability of the product.