April 3, 2018

Health Data to Empower the Individual

Each person has their own idea of what should be private and what can be shared with others.With the emergence of various global social media platforms (e.g., Facebook, Twitter etc..) people are more open to the sharing of their personal details. Even patient organizations (e.g. PatientsLikeMe) now provide the means to share in-depth information about health status and help to identify research opportunities for motivated individuals.

However, platforms that enable disclosure of private information such as health data need to be managed in a way where people can be sure that their information will be kept safely, confidential and used wisely, now and in the future. Similarly, patients/data donors need incentivization to use these types of platforms, i.e. they need to feel that they are getting value in return.

The Shivom platform makes it easy for everybody to monetize their genome and to support scientific research. Sharing data generated from human research participants must be done in a manner that appropriately protects participant interests. With blockchain technology (link to blockchain for genomic and health data blog), smart contracts are revolutionizing how data can be managed, taking up the role of classical ‘honest brokers’ which ensure the appropriate use of genetic information and effectiveness, accessibility, and quality of genetic services.

The Shivom platform provides a way for people to securely use their genomic data, by uploading data from multiple genetic testing services, and eventually by using Shivom’s own DNA kits, and providing them with incentives for sharing that information for research purposes. Once people have uploaded their genome sequence or after they got their DNA sequenced with one of our kits, they get access to various health-related apps and services across the entire platform, to manage their health.

Each individual can learn just what they want to learn about themselves. Sometimes, people want to know only parts of their potential future, in particular only information that has actionable consequences. This empowers donors to take control of their health by improving access to actionable information and by making more healthy lifestyle choices, including the ability to modify their disease risk.

By allowing allow every individual to share their genome through the Shivom platform, we are also aiming to eliminate genomic and healthcare data siloes, which hinder research and innovation. Maintaining a genome and associated clinical information on a blockchain can make information widely available while guaranteeing its authenticity and integrity. The decentralized nature of the blockchain allows any approved participants to join an information exchange pool, without the need to build data exchange routes between affiliated organizations. Patients can transmit genomic data or quantifiable lifestyle information to other stakeholders as they see fit. At the same time, the patient can keep sensitive information, for example, predisposition to substance abuse, hidden from stakeholders. As a result, outcomes research and precision medicine initiatives can be better supported. This framework also allows other stakeholders, such as employers or insurers to incentivize the individual’s lifestyle changes.

In this way, blockchain technology will also help people keep sensitive information, such as disease predispositions, mental health or substance abuse data from parties that patients may not want to access their health records (e.g. insurers), while ensuring that R&D efforts and treatments are still made possible. It allows patients to engage in more shared decision-making about their health with the healthcare providers of their choosing, enabling a greater patient-focused and patient-drive healthcare ecosystem.

— By Dr.Axel Schumacher(CEO of Project SHIVOM)
 — Dr. Natalie Pankova(CSO of Project SHIVOM)

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