Gustave Roussy Insitut, a Paris-based cancer center, has formed a partnership with Embleema, a New York-based healthcare blockchain network, to develop blockchain health data sharing applications for oncology clinical research and development.
The partnership will enable the integration of health data and consolidation onto a data exchange, providing patients of the Gustave Roussy Institut the ability to access and control their data.
“Our partnership with Embleema will define a new ethical model in drug development, so individual healthcare data may be used to further clinical research, in a transparent manner that fully respects patient rights,” said Gustave Roussy Institut General Director Alexander Eggermont.
“Blockchain technology allows real world data to finally be able to evaluate the effectiveness and safety of treatments and deliver new treatments to patients faster,” he added.
Under the partnership, Embleema will deploy its technology and develop new data sharing standards for oncology studies at the Gustave Roussy Insitut.
Embleema has previously developed blockchain applications to enable the secure exchange of health data, allowing patients to consolidate their data on a single repository. Blockchain technology enables each patient to exercise full data sovereignty, while providing researchers and pharmaceutical companies with authenticated data to evaluate new investigational drugs.
“By streamlining the collection and sharing of clinical information, while ensuring patient consent, Embleema aims to accelerate the development of new drugs and improve the real-world data collection of existing marketed drugs,” commented Embleema CEO Robert Chu.
Embleema said it has formed a consortium that brings together patient advocacy groups, medical providers, life sciences companies, technology companies, standardization bodies, and regulators to develop solutions that standardize the secure collection and exchange of health data.
Secure data exchange for research is one use case identified in a recent HITInfrastructure.com feature article.
Health-related organizations battle to exchange health data across different systems. Providers, payers, vendors, and regulators have endeavored to overcome interoperability issues for years.
“A patient’s medical information can be scattered across medical centers, physicians, health plans and others,” explained a Deloitte-Pfizer white paper on the subject.
“Often healthcare organizations store this data in different digital formats and EHR systems, which can make the task to aggregate and analyze patient data on common terms very difficult and can result in inconsistent formats in the way data holders may make health data available to patients. The lack of continuity that surrounds medical data and EHRs is a major concern for patients,” the paper noted.
The white paper pinpointed the following barriers to sharing data and patient data access for clinical research:
- Limited accessibility and knowledge of clinical trial opportunities
- Few incentives for patients to share their medical information
- Lack of trust that sensitive medical information will be kept secure
- Lack of digital health record interoperability
The clinical research community has tried to address some of these issues, yet its work has not succeeded so far.
“As many as 60 percent to 80 percent of clinical trials have, unfortunately, been found to be not reproducible. This means that we’re making clinical decisions, we’re approving drugs and devices, we’re doing many, many things where the data itself is substantially distorted, largely due to the challenges with working with clinical trials data across multiple sites, multiple years, and multiple stakeholders,” said Heather Leigh Flannery, Health Circle Global Lead at ConsenSys and Co-Founder and Board Chair of Blockchain in Healthcare Global.
A blockchain network can link patients, pharmaceutical firms, research institutions, providers, and regulators to improve secure data sharing in research environments. Patients can submit their health data and look for clinical research opportunities matching their medical profile.
Blockchain is able to protect patient confidentiality by de-identifying the data to ensure that only trusted users could access it and relate it to records on the blockchain. This permits researchers to analyze anonymous data and get access to the particular information on the patient to use in their research.
Date: March 13, 2019
Source: HIT Infrastructure