OpenSAFELY: A Game-Changer in Health Data Transparency and Privacy

OpenSAFELY: A Game-Changer in Health Data Transparency and Privacy

Sub: Sci

Sec: Health

Why in News

The OpenSAFELY platform, developed by Ben Goldacre and his team at the University of Oxford, has revolutionized access to health data in the U.K. by ensuring privacy while offering a transparent system for researchers. This system is particularly significant for studying COVID-19-related data and other health conditions, creating a balance between public health research and patient privacy.

About OpenSAFELY:

OpenSAFELY is a secure, transparent, open-source software platform for analysis of electronic health records data. All platform activity is publicly logged. All code for data management and analysis is shared, under open licenses and by default, for scientific review and efficient re-use.

OpenSAFELY is a set of best practices encoded as software. It can be deployed to create a Trusted Research Environment (TRE) alongside appropriate database, compute, governance, and administrative elements; or it can be deployed as a privacy-enhancing layer on any existing secure database or TRE.

OpenSAFELY provides access to health records of 58 million U.K. citizens without compromising individual privacy.

Researchers do not directly access raw health data. Instead, they use dummy datasets to test queries before being sent to secure systems for retrieval of necessary data, preventing unauthorized access.

How Does OpenSAFELY Ensure Transparency?

Open Code Sharing: Every line of code used by researchers is immediately made publicly available, ensuring transparency in research methodology.

Prevention of p-hacking: The platform eliminates the risk of manipulating data to achieve desired results. This transparency avoids the issue of different analysts producing varying results from the same dataset.

About National Health Service (NHS):

The NHS was established in 1948 as a publicly funded healthcare system in the U.K., providing healthcare free at the point of delivery. It offers comprehensive healthcare services to all U.K. residents, funded primarily through taxation.

Every British citizen has a single health record maintained by the NHS, containing lifelong health information from birth to death. Since 1996, 96% of NHS general practices have maintained electronic health records, aiding in healthcare efficiency and research.

NHS health data is used for research and analysis, with platforms like OpenSAFELY ensuring privacy and transparency.

About Indian National Digital Health Mission (NDHM):

Under National Digital Health Mission, every Indian will get a Health ID card that will store all medical details of the person including prescriptions, treatment, diagnostic reports and discharge summaries.

The citizens will be able to give their doctors and health providers one-time access to this data during visits to the hospital for consultation. However, access to the confidential medical data will have to be given separately for each visit due to fears over data confidentiality.

The National Digital Health Mission will allow patients to access health services remotely through tele-consultation and e-pharmacies, as well as offer other health-related benefits

It comes under the Ayushman Bharat Pradhan Mantri Jan ArogyaYojana (AB PM-JAY) and implemented by National Health Authority.

The National Health Policy 2017 had envisaged creation of a digital health technology eco-system aiming at developing an integrated health information system that serves the needs of all stakeholders and improves efficiency, transparency and citizens’ experience with linkage across public and private healthcare.

In the context of this, central government’s think-tank NitiAayog, in June 2018, floated a consultation of a digital backbone for India’s health system — National Health Stack.