For the past seven years, the India Digital Health Net (IDHN)––an interdisciplinary team of experts from medicine, computer science, data science, and law based at Harvard and in India––has contributed to shaping India’s evolving digital health ecosystem, beginning with its landmark paper “Re-imagining Health Data Exchange,” a blueprint for what became the national digital health architecture. Over the past seven years, IDHN has contributed several white papers to law makers as data privacy jurisprudence in India, and technologies, evolved at a rapid pace. Our collaborators at St John’s Research Institute, under the leadership of Dr. Tony Raj, have successfully led these efforts in India.
This year, IDHN achieved two significant milestones: completing a first of its kind study mapping gaps in healthcare service delivery to possible digital interventions, 150 stakeholders spanning patients, providers, administrators and corporations. IDHN also concluded its multi-year assessment of India’s Non-Communicable Diseases (NCD) Screening and Management tool. In the essay below, Dr. Verghese Thomas, Assistant Professor of Research in the Division of Medical Informatics at St. John’s Research Institute and Associate of the Mittal Institute, provides further insights.
This project aims to ensure that India’s digital health system avoids the pitfalls of the near monolithic U.S. EMR system, ensuring that digital records in India are patient-centric, while in compliance with local and global data protection standards. We contributed to shaping the technical framework that now serves as the foundation for India’s digital health system. Along with our partners at St. John’s Institute, we are now working on disseminating important lessons from the national needs finding study to demonstrate to planners and funders that what patients and providers want in an EMR is very different from those financing these systems. Ignoring this risks fueling the kind of physician burnout we have experienced in the United States – a misstep India cannot afford.
Exploring digital health needs through participatory design research
The India Digital Health Needs Finding Study, led by Prof. Satchit Balsari, is the first of its kind, in-depth and wide-ranging exploration of the varied needs of stakeholders in India’s digital health ecosystem. The study explores the convergence and divergence of digital health needs felt by patients, caregivers, healthcare providers, and health system administrators across multiple health system levels and geographies in India. The project aims to inform government, industry, and academic decision makers as they channel investments in digital health in India.
Community health workers in Meghalaya participate in a generative design research session.
The study uses participatory design research methods to understand the participants’ aspirations for digital tools through interactive and engaging generative sessions. By channeling their creativity towards making design artifacts, participants were able to give expression to their underlying needs, providing data on future solutions and avenues for innovation.
Data collection began in the second half of 2023 and continued into 2024. Over 150 participants from seven states in India participated in workflow mapping, user-driven prototyping, and in-depth interviews to explore and express their routine workflows, challenges, pain points, and visions for future digital health tools. The data collected is an unprecedented repository of design research data with the potential to initiate and guide innumerable innovations for digital health in India and similar countries. The study also explored the participants’ perceptions of the innovations that are being deployed by the Indian National Health Authority through the Ayushman Bharat Digital Mission.
The data is being analyzed to form narrative use-cases, identify subdomains and domains of digital health needs, and to delineate and interpret patterns of convergence and divergence of needs within and between stakeholder groups. The needs expressed are grouped broadly into need for data, information, and knowledge from digital tools, and needs for specific user experiences from digital health tools.
The study can reshape the healthcare innovations in India, as they will provide guidance to decision makers involved in commissioning, funding, or developing digital health tools. As part of the study, the team has also developed participatory design research methods and tools that will be disseminated to promote design research for improving health outcomes in India.
Applying human-centered design to digital health platform optimization
A community health worker in Karnataka participates in a usability test.
The study of India’s Non-Communicable Diseases (NCD) aims to improve the usability of one of the world’s largest digital health platforms: the mobile health platform of the Government of India’s National Program for Prevention and Control of Non-Communicable Diseases. The project employed human-centered design research methods, beginning with empathizing with end users and understanding their pain points and challenges in adopting the platform. The team then iteratively ideated, prototyped, and tested potential solutions. Data collection and design activities took place in two districts in Karnataka.
The designs that resulted from the optimization exercise afforded significantly higher efficiency and effectiveness for multiple end user groups, demonstrating the benefits of applying human centered design to digital health. The project has produced several design and implementation recommendations for optimizing the platform and tools for conducting human centered design research on digital health tools in India. Significant changes in the information architecture were recommended to improve the users’ interactions with the apps. For example, we recommended breaking down divisions between disease categories by integrating the navigation paths for multiple diseases into a single flow. To improve implementation, we recommended addressing the digital divide within the health system workforce by rolling out additional training measures to support users with lower digital literacy. The chief outcome was the demonstration of the optimization process based on human centered design principles that provides a model for digital health design and implementation in India.
By Dr. Verghese Thomas, Assistant Professor of Research in the Division of Medical Informatics at St. John’s Research Institute
☆ The views represented herein are those of the interview subject and do not necessarily reflect the views of the Mittal Institute, its staff, or its Steering Committee.
