myPDx

Problem space

Privacy and security of client data is a major concern. Almost daily, news outlets report data breaches and mounting consumer distrust of large, centralized platforms that aggregate data and use it for secondary purposes without individuals’ knowledge or consent. As a result, regulations are emerging. For example, the General Data Protection Regulation (GDPR) has updated and unified data privacy laws across the European Union, and similar legislation is being enacted in North America and other jurisdictions. If concern about health data sharing is left unaddressed, individuals may be less inclined to take part in programs where personal health solutions are driven by data analytics. Moreover, reduced access to patient data can be a barrier for healthcare researchers and providers.

Opportunity Space

Blockchain technology offers a possible solution to private & secure data sharing. Blockchain is a distributed ledger technology where confirmed and validated sets of transactions are held in blocks chained together to make tampering difficult. Blockchain’s design and distributed autonomous operation establish it as a disruptive technology with significant social, political, and economic implications. One of its key applications has been to decentralize management of privacy. Blockchain platforms such as Hyperledger Indy, the platform used to develop myPDx, have been specifically designed to give users control over their data to achieve decentralized privacy management.

research partner Use Case

Research Partner Use Case is an ongoing supercluster project funded by UBC, MY, StonePaper, and CDTS. Its objective deals primarily with figuring out the technical architecture in enabling individuals to share their de-identifiable health data with relevant research projects.

A simplified system map of myPDx's Researcher Partner Use Case ©April Nguyen

Researcher Interview

The researcher interview is designed to gain insights into the researchers' current process, their pain points, and the ways in which myPDx would help alleviate them.

Client Interview

The client interview sheds light on how the clients value their health data privacy and the conditions under which they are willing to share their health data.

Researcher Persona

Client Persona

Reflection

The application of blockchain technology in digital health environment provides a promising solution to allowing third parties to gain access to real world data without putting clients' privacy at risk. However, in ensuring security and privacy, the long sequence of verification steps compromises the user experience and potentially undermines clients' motivation to share their data. Moreover, the user interviews suggested that although the participants were aware of issues surrounding health data privacy, their willingness to take action depended on how much they valued their health data.

Identify a key stakeholder

Although various groups of users could benefit from a platform such as myPDx, it's necessary to identify a key stakeholder and cater the interaction experience to their needs. Thus, the design sprint is designed to understand who the target audience is, what pain points they are struggling with, and what solutions myPDx could offer.

Design a simple and elegant solution

Because myPDx is looking for commercialization opportunities, more emphasis needs to be put on designing an elegant user experience to drive engagement and adoption. As an advocate for user-centric approach, I believe the creation of a desirable and relevant product would benefit tremendously from testing ideas and assumptions with the target audience. Therefore, the next steps in the product development would involve multiple cycles of building, testing, learning, and improving.