Recruiting and retention remain two of the biggest challenges in clinical trials, and despite innumerable attempts over the years, improvement remains largely unrealized. Clinical trial data sharing and the ability for research participants to experience value discovery (including personal health data monetization) are some of the promises of blockchain for these uses cases. Bidirectional clinical trial data sharing may serve as an onramp to allow more widespread patient access to data in the broader healthcare ecosystem.
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Given the role of network effects in many blockchain efforts, it is unsurprising that consortia and collaboration are key in this use case. The pharmaceutical industry has two notable blockchain efforts in the Innovative Medicines Initiative (IMI) Blockchain Enabled Healthcare and the Pharmaceutical Users Software Exchange (PhUSE) Blockchain Project. Both boast many industry representatives, with PhUSE including over 50 stakeholders including the pharmaceutical industry, blockchain startups, legacy corporations, and governmental agencies. In the PhUSE White Paper, a case is outlined for patients who can access their own data (SEE Clinical Data Access below) contributing it via HL7 FHIR® standards to an EHR, thus accelerating one of the main pain points (i.e., recruiting). Normalizing this process, along with the subsequent allowance for near real-time e-consenting and other efficiency gains could reduce 3-5 years from the standard cycle from research to clinical practice (i.e., 17 years).
Clinical Data Access
Fundamentally, healthcare delivery organizations must capture clinical data to inform operations. Enabling practitioners within any system to have access to clinical data relevant to the diagnosis, therapeutic planning, and direct treatment and care of patients is a basic operational information need. From an administrative perspective, clinical data support claims and payment as well as process improvement within the organization.
Expanding beyond the walls of any single healthcare delivery entity, health information exchange enables a longitudinal view and access to patient clinical data across multiple healthcare entities. The common thread that unites a longitudinal view of patient data then becomes the patient rather than the provider organization, and blockchain can be used to shift the focus to the patient. Patients can be enabled to manage their medical records contributed by multiple provider organizations via blockchain technology. Longitudinal patient medical records simultaneously enter into the use cases traditionally served by electronic medical records (EMR) and personal health records (PHR) solutions, depending on scope.
Health Data Monetization
Patients, research participants, and others could soon have more access, choices, mechanisms, and value benefits (e.g., fiat, cryptocurrencies, equity, social capital) to incentivize data sharing, health behavior change, and research participation. Genomics data has been an early lead in this use case including efforts by Encrypgen, LunaDNA, and Nebula Genomics.