Abstract
Significant effort is required to recruit and validate patients for research studies. Researchers are typically limited to patients that they have a physical touchpoint with (e.g., patients at VUMC). This physical access limitation reduces the research attention that patients with rare diseases with little geographic concentration and poorer patients in rural areas receive. This paper explores the use of mobile computing and blockchain technology to provide validation of research studies and their data usage, advertisement of research studies, collection of research data, and sharing of data across studies. The paper presents key challenges of using blockchains and mobile computing to solve these issues, competing architectural approaches, and the benefits/trade-offs of each approach.
Highlights
A critical component of healthcare research is finding and recruiting participants in research studies and ensuring that researchers have sufficient data to make decisions regarding patient qualification to participate in a study
This paper explores the use of mobile computing and blockchain technology to provide validation of research studies and their data usage, advertisement of research studies, collection of research data, and sharing of data across studies
We explore key research challenges to realizing this vision, we fully acknowledge the presence of many other types of challenges, such as challenges associated with specific blockchain implementations
Summary
A critical component of healthcare research is finding and recruiting participants in research studies and ensuring that researchers have sufficient data to make decisions regarding patient qualification to participate in a study. After careful analysis of the research challenges and promising attributes of distributed ledgers, we propose an initial open architecture with a detailed set of domain-specific requirements for study participant recruitment and data sharing in the emerging patient-centered data stewardship model. This chain of transactions could include the ability for participants to monetize the use of their data, or generally for their participation, if such were a requirement All these transactions take place directly between the participant’s device and the researcher using a standard platform, such as REDCap. In order to expedite the matching process, studies are defined by three sets of characteristics that may be matched against: boolean conditions (ex: asthma, hypertension), enumerated characteristics (ex: hair color, relationship status), and ranged characteristics (ex: desired age range, desired weight range, how long a condition has been diagnosed). The model allows patients to freely choose which research study their data may be shared with, and only when a patient chooses to let a study or researcher access their data on-device, it will be delivered to the recipient
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