“Big” Health Data
︎
Policy and Regulatory Framework
Billions are being invested in medical big data analytics and AI to develop decision making and prediction tools that aim to improve how, when, where and why we seek care. However, fundamental questions about how health data may be used, collated, anonymized, exchanged, sold, traded or analyzed are yet to be answered. International jurisprudence around these issues is still evolving: empiric testing is now required to find the right balance between the desire to leverage vast amounts of data for secondary use, with the need to protect an individual’s privacy and safety. My team’s research seeks to test the “AI readiness” of healthcare data in India. We are examining state-level health data to document best practices in data aggregation and anonymization by simulating merger of large public health databases; examin data for differential access and secondary use by third-parties; and examining the adequacy of existing domestic laws and key international guidelines in protecting privacy, promoting transparency and enabling the generation and availability of (big) health data.
︎ (Project Link)
India’s National Digital Health Blueprint (NDHB), released by the Government of India, outlines its vision for moving forward with a major health digitization program that will affect millions of citizens. Data scientists, researchers, academics, and activists around the country have responded, and have expressed concerns about the speed at which the rollout has been proposed — highlighting the need for addressing accompanying regulatory frameworks for a sharper focus on change management.
The India Digital Health Net (IDHN) is a research and policy collaborative led by Dr. Satchit Balsari, Assistant Professor of Emergency Medicine at Harvard Medical School, in partnership with the Mittal Institute. It focuses its efforts on the development of a patient-centric, provider-friendly Application Programming Interface-enabled (API) health exchange ecosystem. Working with stakeholders in both the United States and India, the group is made up of policymakers, technical and legal experts, and medical practitioners.
In July, the government invited the public to comment on the NDHB, and the IDHN has recently released a report in collaboration with numerous partners who have experience developing, analyzing, designing, or using digital health systems.
In 2017, the Government of India constituted a special committee of experts chaired by Retired Supreme Court Justice Shri B. N. Srikrishna to study “various issues relating to data protection in India and make specific suggestions on principles to be considered for data protection in India and suggest a draft Data Protection Bill. The objective is to ‘ensure growth of the digital economy while keeping personal data of citizens secure and protected.’ ”
On November 2017, the Committee released a White Paper on Data Protection and solicited public comments. The Committee conducted town-hall meetings in Delhi, Mumbai, Hyderabad and Bangalore, and invited written submission via an online portal.
In response to this call for public review of the White Paper, the Harvard FXB Center for Health and Human Rights convened a group of experts from Harvard and from India. The Center submitted two briefs: one focused on health data, with expert contributions from industry, academia and advocacy groups; and a second focused on child protection, in line with the Center’s longstanding commitment to the protection and promotion of children’s rights.
︎ (Project Link)
In April 2019, the India Digital Health Network at the Lakshmi Mittal Harvard South Asia Institute hosted a one day workshop "Powering the Personal Health Record" in New Delhi. The IDHN convened this workshop to learn from the several initiatives across the country that are building components of what may ultimately become India’s health-tech grid. Desired outcomes include actionable steps to address barriers to building the much-needed models for health data generation, use, application and exchange, in India. Workshop outputs included a roadmap for possible collaborative work between the invited entities to accelerate current technical and regulatory efforts by fostering synergies between implementing agencies, scientists, and regulators.
︎ (Project Link)
This paper outlined a federated, patient-centric, application programming interface (API)–enabled health information ecosystem that leverages India’s near-universal mobile phone penetration, universal availability of unique ID systems, and evolving privacy and data protection laws. The PHR-centric architecture proposed here was subsequently adopted by the government's policy thinktank NITI Ayog in its National Digital Health Bluebook.
︎ (Project Link)
We convened an interdisciplinary workshp of doctors, lawyers, comuter scientists and plicy makers from India and the US to explore how best to prepare the Indian health data ecoystem for digitization, avoding the colossal errors of the US healthcare IT system.
Prototypes
NCD Optimization Study - 2019-2020
--
--
︎ (Project Link)
One of the first mobile, cloud-based disease surveillance tools to be ever implemented in mass gatherings. Initially conceived as an electronic epidemiological tool, periodic iterations developed in tandem with new and emerging technologies (tablet computers, cloud computing, mobile hotspots), have resulted in the application of this surveillance tool to two of the world’s largest mass gatherings. The tool’s implementation has been widely recognized in local and international media, including by the New York Times, Discovery, and PBS.
Policy and Regulatory Framework
AI Readiness of Big Health Data ︎
Billions are being invested in medical big data analytics and AI to develop decision making and prediction tools that aim to improve how, when, where and why we seek care. However, fundamental questions about how health data may be used, collated, anonymized, exchanged, sold, traded or analyzed are yet to be answered. International jurisprudence around these issues is still evolving: empiric testing is now required to find the right balance between the desire to leverage vast amounts of data for secondary use, with the need to protect an individual’s privacy and safety. My team’s research seeks to test the “AI readiness” of healthcare data in India. We are examining state-level health data to document best practices in data aggregation and anonymization by simulating merger of large public health databases; examin data for differential access and secondary use by third-parties; and examining the adequacy of existing domestic laws and key international guidelines in protecting privacy, promoting transparency and enabling the generation and availability of (big) health data.
National Digital Health Blue Print Response 2019 ︎
︎ (Project Link)
India’s National Digital Health Blueprint (NDHB), released by the Government of India, outlines its vision for moving forward with a major health digitization program that will affect millions of citizens. Data scientists, researchers, academics, and activists around the country have responded, and have expressed concerns about the speed at which the rollout has been proposed — highlighting the need for addressing accompanying regulatory frameworks for a sharper focus on change management.
The India Digital Health Net (IDHN) is a research and policy collaborative led by Dr. Satchit Balsari, Assistant Professor of Emergency Medicine at Harvard Medical School, in partnership with the Mittal Institute. It focuses its efforts on the development of a patient-centric, provider-friendly Application Programming Interface-enabled (API) health exchange ecosystem. Working with stakeholders in both the United States and India, the group is made up of policymakers, technical and legal experts, and medical practitioners.
In July, the government invited the public to comment on the NDHB, and the IDHN has recently released a report in collaboration with numerous partners who have experience developing, analyzing, designing, or using digital health systems.
FXB Response to Srikrishna White Paper on Data Protection - 2018 ︎
In 2017, the Government of India constituted a special committee of experts chaired by Retired Supreme Court Justice Shri B. N. Srikrishna to study “various issues relating to data protection in India and make specific suggestions on principles to be considered for data protection in India and suggest a draft Data Protection Bill. The objective is to ‘ensure growth of the digital economy while keeping personal data of citizens secure and protected.’ ”
On November 2017, the Committee released a White Paper on Data Protection and solicited public comments. The Committee conducted town-hall meetings in Delhi, Mumbai, Hyderabad and Bangalore, and invited written submission via an online portal.
In response to this call for public review of the White Paper, the Harvard FXB Center for Health and Human Rights convened a group of experts from Harvard and from India. The Center submitted two briefs: one focused on health data, with expert contributions from industry, academia and advocacy groups; and a second focused on child protection, in line with the Center’s longstanding commitment to the protection and promotion of children’s rights.
Powering the PHR Workshop - 2018 ︎
︎ (Project Link)
In April 2019, the India Digital Health Network at the Lakshmi Mittal Harvard South Asia Institute hosted a one day workshop "Powering the Personal Health Record" in New Delhi. The IDHN convened this workshop to learn from the several initiatives across the country that are building components of what may ultimately become India’s health-tech grid. Desired outcomes include actionable steps to address barriers to building the much-needed models for health data generation, use, application and exchange, in India. Workshop outputs included a roadmap for possible collaborative work between the invited entities to accelerate current technical and regulatory efforts by fostering synergies between implementing agencies, scientists, and regulators.
An API-enabled Roadmap for India - 2018 ︎
︎ (Project Link)
This paper outlined a federated, patient-centric, application programming interface (API)–enabled health information ecosystem that leverages India’s near-universal mobile phone penetration, universal availability of unique ID systems, and evolving privacy and data protection laws. The PHR-centric architecture proposed here was subsequently adopted by the government's policy thinktank NITI Ayog in its National Digital Health Bluebook.
Exchanging Health Information Report - 2016 ︎
︎ (Project Link)
We convened an interdisciplinary workshp of doctors, lawyers, comuter scientists and plicy makers from India and the US to explore how best to prepare the Indian health data ecoystem for digitization, avoding the colossal errors of the US healthcare IT system.
Prototypes
NCD Optimization Study - 2019-2020
--
3T: Training, Taskshifting and Technology - 2017-2020
--
Emcounter: Digital disease surveillance at the Nashik Kumbh Mela 2015 ︎
︎ (Project Link)
One of the first mobile, cloud-based disease surveillance tools to be ever implemented in mass gatherings. Initially conceived as an electronic epidemiological tool, periodic iterations developed in tandem with new and emerging technologies (tablet computers, cloud computing, mobile hotspots), have resulted in the application of this surveillance tool to two of the world’s largest mass gatherings. The tool’s implementation has been widely recognized in local and international media, including by the New York Times, Discovery, and PBS.
Disease Surveillace at the world's largest gathering - 2013 ︎
Emcounter: a proto EHR - 2010 ︎
Disaster and Forced Migration ︎
(Mitigation, Preparedness and Response)
Research and Advocacy
--
--
︎ (Project Link)
A study from Harvard T.H. Chan School of Public Health that found that the death toll from Hurricane Maria in Puerto Rico in September 2017 was likely much higher than at first thought. Using a representative, stratified sample, the study surveyed 3299 randomly chosen households across Puerto Rico to produce an independent estimate of all-cause mortality after the hurricane. Respondents were asked about displacement, infrastructure loss, and causes of death. From the survey data, it was estimated that a mortality rate of 14.3 deaths (95% confidence interval [CI], 9.8 to 18.9) per 1000 persons occurred from September 20 through December 31, 2017. This rate yielded a total of 4645 excess deaths during this period (95% CI, 793 to 8498), equivalent to a 62% increase in the mortality rate as compared with the same period in 2016. This household-based survey suggests that the number of excess deaths related to Hurricane Maria in Puerto Rico is more than 70 times the official estimate.
--
︎ (Project Link)
Haiti has long had difficulty in protecting its children from harm. The earthquake that struck the country on January 12 destroyed much of the capital, Port-au-Prince, as it killed many government officials and United Nations (UN) workers and left as many as 230,000 people dead and many thousands injured. In the wake of this sweeping disaster, the plight of Haiti's children has acquired new and terrible dimensions.
Online crowd-source disaster response analysis tool deployed in collaboration with the local government and academic institutions, after terror strikes in Mumbai in 2006 and 2008. This, among several global crow-sourcing initiatives like Ushahidi, led to the development of the new field of Crisis Mapping.
Capacity Building
Climate and Human Health Fellowship (US) - 2019 ︎
The Fellowship trains physicians to examine and advance evidence-based policies that help build climate-resilient communities and health systems. This two-year experiential fellowship training includes a master’s degree in public health (research methodology) at Harvard Chan, research projects focused on community- and hospital-based resilience and response strategies, and policy and advocacy training with partners in Washington, DC and elsewhere. Fellows hold a clinical appointment at the BIDMC Department of Emergency Medicine and Harvard Medical School, and are based at the FXB Center for Health and Human Rights and the Center for Climate, Health, and the Global Environment at the Harvard T.H. Chan School of Public Health (Harvard C-CHANGE). In addition, they have the opportunity to be mentored by faculty from across Harvard, including the Center for Communicable Disease Dynamics and the Harvard University Center for the Environment. The fellowship is part of the LCF Consortium on Climate & Health Science Policy in partnership with the Climate & Health Science Policy Fellowship at the University of Colorado. Off-site education is obtained through internships and visiting scientist opportunities at the National Institute of Environmental Health Sciences, the National Institute of Standards and Technology, and other sites.
--
--
(Mitigation, Preparedness and Response)
Research and Advocacy
Kerala Monsoon Impact Ascertainment Study - 2019
--
Syrian: Burden of War Study 2016-2020
--
Hurricane Maria Mortality Study- 2018 ︎
︎ (Project Link)
A study from Harvard T.H. Chan School of Public Health that found that the death toll from Hurricane Maria in Puerto Rico in September 2017 was likely much higher than at first thought. Using a representative, stratified sample, the study surveyed 3299 randomly chosen households across Puerto Rico to produce an independent estimate of all-cause mortality after the hurricane. Respondents were asked about displacement, infrastructure loss, and causes of death. From the survey data, it was estimated that a mortality rate of 14.3 deaths (95% confidence interval [CI], 9.8 to 18.9) per 1000 persons occurred from September 20 through December 31, 2017. This rate yielded a total of 4645 excess deaths during this period (95% CI, 793 to 8498), equivalent to a 62% increase in the mortality rate as compared with the same period in 2016. This household-based survey suggests that the number of excess deaths related to Hurricane Maria in Puerto Rico is more than 70 times the official estimate.
Rohingya Crisis - 2017
--
Protecting the Children of Haiti ︎
︎ (Project Link)
Haiti has long had difficulty in protecting its children from harm. The earthquake that struck the country on January 12 destroyed much of the capital, Port-au-Prince, as it killed many government officials and United Nations (UN) workers and left as many as 230,000 people dead and many thousands injured. In the wake of this sweeping disaster, the plight of Haiti's children has acquired new and terrible dimensions.
mumbaiVOICES - 2005, 07 ︎
Online crowd-source disaster response analysis tool deployed in collaboration with the local government and academic institutions, after terror strikes in Mumbai in 2006 and 2008. This, among several global crow-sourcing initiatives like Ushahidi, led to the development of the new field of Crisis Mapping.
Capacity Building
Climate and Human Health Fellowship (US) - 2019 ︎
The Fellowship trains physicians to examine and advance evidence-based policies that help build climate-resilient communities and health systems. This two-year experiential fellowship training includes a master’s degree in public health (research methodology) at Harvard Chan, research projects focused on community- and hospital-based resilience and response strategies, and policy and advocacy training with partners in Washington, DC and elsewhere. Fellows hold a clinical appointment at the BIDMC Department of Emergency Medicine and Harvard Medical School, and are based at the FXB Center for Health and Human Rights and the Center for Climate, Health, and the Global Environment at the Harvard T.H. Chan School of Public Health (Harvard C-CHANGE). In addition, they have the opportunity to be mentored by faculty from across Harvard, including the Center for Communicable Disease Dynamics and the Harvard University Center for the Environment. The fellowship is part of the LCF Consortium on Climate & Health Science Policy in partnership with the Climate & Health Science Policy Fellowship at the University of Colorado. Off-site education is obtained through internships and visiting scientist opportunities at the National Institute of Environmental Health Sciences, the National Institute of Standards and Technology, and other sites.
DPRI Case-studies (Hong Kong) 2015-17
--
Iraq-IMC
--
South Sudan-IMC
--
Emergency Management Exercises (EMEx) (India, Sri Lanka) 2008-10