Powering the Personal Health Record: Catalysts and Barriers in India

Apr 12,2019

On April 3rd, the India Digital Health Net (IDHN), a multidisciplinary research and development initiative established to support an Application Programming Interface-enabled (API) federated health data architecture in India, convened a workshop in New Delhi to learn from the several initiatives across the country that are building components of what may ultimately become India’s health tech grid.  The workshop was organized with support from the Lakshmi Mittal and Family South Asia Institute and the Asia Center. Dr. Satchit Balsari (Harvard Medical School and Harvard FXB Center for Health and Human Rights) and Professor Tarun Khanna (Harvard Business School) served as co-chairs of the event.

Participants included key research and healthcare institutions across the entire delivery system, including from the state governments of Gujarat and Rajasthan, St. John’s Research Institute (Bangalore), iSPIRT, Dell, Piramal Swasthya, OHUM, Tata Memorial Hospital, UNICEF, Argusoft, and several others.

Powering the Personal Health Record
Dr. Balsari started the day’s proceedings by outlining the rationale for a Personal Health Record (PHR) and the opportunity for India to reimagine how health data can be securely accessed for the benefit of patients and providers. Following his remarks, a diverse set of stakeholders presented their work in understanding the current architecture.  Kiran Anandampillai, core volunteer from iSPIRT and technology advisor at the Government of India’s National Health Authority, discussed how the foundational digital building blocks that will enable health information exchange do not currently exist in India, and will need to be built.

Sunita Nadhumani (Dell) walked participants through the efforts by Dell to support the Non-communicable Disease program in Telangana under the Ayushman Bharat program. Dr. Jayanti Ravi (Government of Gujarat) led the team that described the architecture used to share health information in Gujarat using the ImTECHO app. The team from the Piramal Swasthya Tribal Health Program shared how they used mobile medical vans and telemedicine to provide health services to underserved populations in remote areas of the country.

Udai Kumar from OHUM and Dr. Avtar Singh Dua presented the architecture of the Integrated Health Management System (IHMS) in Rajasthan. The IHMS focus is on curative care, but has also been designed for use across all levels from primary care to tertiary-level hospitals.

In his keynote address, Rahul Matthan (Trilegal) outlined the key aspects of privacy jurisprudence and its implications for the design of the PHR architecture. Matthan remarked that innovation in the space of health data exchange must run a legal and regulatory gauntlet given the lack of a streamlined policy framework to allow for health data exchange.

St. John’s Research Institute (SJRI) and the National Cancer Grid outlined nascent proof of concept projects that their organizations were undertaking. SJRI described their prototypical efforts at developing a EHR ‘lites’ - Electronic Health Records for small and mid-sized health centers that are easy to deploy and customize. Dr. Manju Sengar (National Cancer Grid) provided a clinician’s perspective on the health data exchange using the PHR, and emphasized that health technology systems should be designed in a manner so as to not increase time commitments per consultation given the high patient loads seen at institutions like Tata Memorial Hospital.

The workshop concluded with an exploration of collaborative work between the invited entities to accelerate current technical and regulatory efforts to build the proposed prototypes.

Powering the Personal Health Record: Catalysts and Barriers in India

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