Reinforcing Health Data Sharing through Data Democratization.

In this paper, we propose a health data sharing infrastructure which aims to empower a democratic health data sharing ecosystem. Our project, named Health Democratization (HD), aims at enabling seamless mobility of health data across trust boundaries through addressing structural and functional challenges of its underlying infrastructure with the core concept of data democratization. A programmatic design of an HD platform was elaborated, followed by an introduction of one of our critical designs-a "reverse onus" mechanism that aims to incentivize creditable data accessing behaviors. This scheme shows a promising prospect of enabling a democratic health data-sharing platform.

Democratizing data at Novartis through clinical trial data access.

Enabling broad access and usage of clinical trial data within biopharmaceutical companies has historically been impeded by technical, cultural, and policy hurdles. Novartis has attempted to address this comprehensively through a program called data42; here, we explore how a diverse set of enterprise-wide stakeholders formulated a risk-based data access approach to streamline access to anonymized clinical trial data and vastly improved its use by authorized research and development (R&D) associates within the company. The result is that most Novartis clinical trial data requests, from internal associates, can now be automatically approved. The process of developing this framework and its impact on Novartis and the broader industry are explored and discussed.

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.

BACKGROUND: The development of Precision Medicine strategies requires high-dimensional phenotypic and genomic data, both of which are highly privacy-sensitive data types. Conventional data management systems lack the capabilities to sufficiently handle the expected large quantities of such sensitive data in a secure manner. PROMISE is a genetic data management concept that implements a highly secure platform for data exchange while preserving patient interests, privacy, and autonomy. METHODS: The concept of PROMISE to democratize genetic data was developed by an interdisciplinary team. It integrates a sophisticated cryptographic concept that allows only the patient to grant selective access to defined parts of his genetic information with single DNA base-pair resolution cryptography. The PROMISE system was developed for research purposes to evaluate the concept in a pilot study with nineteen cardiomyopathy patients undergoing genotyping, questionnaires, and longitudinal follow-up. RESULTS: The safety of genetic data was very important to 79%, and patients generally regarded the data as highly sensitive. More than half the patients reported that their attitude towards the handling of genetic data has changed after using the PROMISE app for 4 months (median). The patients reported higher confidence in data security and willingness to share their data with commercial third parties, including pharmaceutical companies (increase from 5 to 32%). CONCLUSION: PROMISE democratizes genomic data by a transparent, secure, and patient-centric approach. This clinical pilot study evaluating a genetic data infrastructure is unique and shows that patient's acceptance of data sharing can be increased by patient-centric decision-making.

Reinforcing Health Data Sharing Through Data Democratization.

In this paper, we propose a health data sharing infrastructure which aims to empower a democratic health data sharing ecosystem. Our project, named Health Democratization (HD), aims to enable seamless data mobility of health data across trust boundaries, through addressing structural and functional challenges of its underlying infrastructure with a throughout core concept of data democratization. A programmatic design of HD platform was elaborated, followed by an introduction about one of our exploratory designs -an "reverse onus" mechanism that aims to incentivize creditable data accessing behaviors. This scheme shows a promising prospect of enabling a democratic health data sharing platform.