uid

When I opposed Aadhaar in 2010 , I was called a BJP stooge. In 2016 I am still opposing Aadhaar for the same reasons and I am told I am a Congress die hard. No one wants to see why I oppose Aadhaar as it is too difficult. Plus Aadhaar is FREE so why not get one ? Ram Krishnaswamy

First they ignore you, then they laugh at you, then they fight you, then you win. -Mahatma Gandhi

In matters of conscience, the law of the majority has no place. Mahatma Gandhi

“The invasion of privacy is of no consequence because privacy is not a fundamental right and has no meaning under Article 21. The right to privacy is not a guaranteed under the constitution, because privacy is not a fundamental right.” Article 21 of the Indian constitution refers to the right to life and liberty -Attorney General Mukul Rohatgi

“There is merit in the complaints. You are unwittingly allowing snooping, harassment and commercial exploitation. The information about an individual obtained by the UIDAI while issuing an Aadhaar card shall not be used for any other purpose, save as above, except as may be directed by a court for the purpose of criminal investigation.” -A three judge bench headed by Justice J Chelameswar said in an interim order.

Legal scholar Usha Ramanathan describes UID as an inverse of sunshine laws like the Right to Information. While the RTI makes the state transparent to the citizen, the UID does the inverse: it makes the citizen transparent to the state, she says.

Good idea gone bad
I have written earlier that UID/Aadhaar was a poorly designed, unreliable and expensive solution to the really good idea of providing national identification for over a billion Indians. My petition contends that UID in its current form violates the right to privacy of a citizen, guaranteed under Article 21 of the Constitution. This is because sensitive biometric and demographic information of citizens are with enrolment agencies, registrars and sub-registrars who have no legal liability for any misuse of this data. This petition has opened up the larger discussion on privacy rights for Indians. The current Article 21 interpretation by the Supreme Court was done decades ago, before the advent of internet and today’s technology and all the new privacy challenges that have arisen as a consequence.
Rajeev Chandrasekhar, MP Rajya Sabha

“What is Aadhaar? There is enormous confusion. That Aadhaar will identify people who are entitled for subsidy. No. Aadhaar doesn’t determine who is eligible and who isn’t,” Jairam Ramesh

But Aadhaar has been mythologised during the previous government by its creators into some technology super force that will transform governance in a miraculous manner. I even read an article recently that compared Aadhaar to some revolution and quoted a 1930s historian, Will Durant. Rajeev Chandrasekhar, Rajya Sabha MP

“I know you will say that it is not mandatory. But, it is compulsorily mandatorily voluntary,” Jairam Ramesh, Rajya Saba April 2017.

August 24, 2017: The nine-judge Constitution Bench rules that right to privacy is “intrinsic to life and liberty” and is inherently protected under the various fundamental freedoms enshrined under Part III of the Indian Constitution

"Never doubt that a small group of thoughtful, committed citizens can change the World; indeed it's the only thing that ever has"

“Arguing that you don’t care about the right to privacy because you have nothing to hide is no different than saying you don’t care about free speech because you have nothing to say.” - Edward Snowden

Special

Here is what the Parliament Standing Committee on Finance, which examined the draft N I A Bill said.

1. There is no feasibility study of the project]

2. The project was approved in haste

3. The system has far-reaching consequences for national security

4. The project is directionless with no clarity of purpose

5. It is built on unreliable and untested technology

6. The exercise becomes futile in case the project does not continue beyond the present number of 200 million enrolments

7. There is lack of coordination and difference of views between various departments and ministries of government on the project

Quotes

What was said before the elections:

NPR & UID aiding Aliens – Narendra Modi

"I don't agree to Nandan Nilekeni and his madcap (UID) scheme which he is trying to promote," Senior BJP Leader Yashwant Sinha, Sept 2012

"All we have to show for the hundreds of thousands of crore spent on Aadhar is a Congress ticket for Nilekani" Yashwant Sinha.(27/02/2014)

TV Mohandas Pai, former chief financial officer and head of human resources, tweeted: "selling his soul for power; made his money in the company wedded to meritocracy." Money Life Article

Nilekani’s reporting structure is unprecedented in history; he reports directly to the Prime Minister, thus bypassing all checks and balances in government - Home Minister Chidambaram

To refer to Aadhaar as an anti corruption tool despite overwhelming evidence to the contrary is mystifying. That it is now officially a Rs.50,000 Crores solution searching for an explanation is also without any doubt. -- Statement by Rajeev Chandrasekhar, MP & Member, Standing Committee on Finance

Finance minister P Chidambaram’s statement, in an exit interview to this newspaper, that Aadhaar needs to be re-thought completely is probably the last nail in its coffin. :-) Financial Express

The Rural Development Ministry headed by Jairam Ramesh created a road Block and refused to make Aadhaar mandatory for making wage payment to people enrolled under the world’s largest social security scheme NRGA unless all residents are covered.


Tuesday, May 3, 2016

9914 - India Needs An Electronic Medical Record System - Swarajya


April 30, 2016, 5:31 pm

To fulfill its pledge of “Sab ka saath, sab ka vikaas”, the NDA government pursues many measures that will bring tangible benefits to the people. However, the government has been criticized for its lackadaisical approach and the lack of a transformative vision towards healthcare. For the nation to meet all its economic goals it needs healthy citizens. After all, health is the hallmark of a nation’s well being.
India needs an initiative that will give an impetus to the healthcare sector. This government, more than any other in the past, is fully aware of the catalytic value of information technology and will therefore look to apply the magic of Information and Communication Technology (ICT) to the healthcare sector too. It is an initiative that can revolutionize the Indian healthcare and technology sector, for a small investment.
India is in an unique position to launch a bold initiative. The time is opportune.
India should launch a public-private project to create a cloud-based National Electronic Medical Record system. The Electronic Medical Record system (EMR) should be created in a government funded open source project and hosted by the government but maintained by private organizations and made available free of cost to all doctors and health providing organizations.
Problems
There are many healthcare related challenges that an emerging economy of the size of India faces. On the ground level, many problems will need to be addressed by policy changes and administrative actions. However, some of the problems can be better solved by leveraging ICT.
The following problems are particularly amenable to be solved by deploying the proposed National Electronic Medical Record System.
Lack And Unavailability Of Records
It is common in India for a patient to arrive at a doctor’s doorstep with no medical record from their past. Either the record is kept in a file based system with other providers, or no record was maintained. The patient may only be vaguely aware of the diagnoses and often tends to have no idea of the drugs that had been prescribed in the past. As a consequence, not only does the quality of care suffer, but the cost goes up significantly too.
Lack Of Standards
In several developed countries, a major issue is that the data is stored in different format systems, with the result that they are not easily shared between organizations and systems. This leads to poor quality of care and increased costs too.
This situation in those countries has come about due to the multiple private vendors gaining a sizeable share of the market. Each of these companies fears an erosion of its market share and a threat to its ambition of becoming a monopoly, leading them to thwart any attempt to create interoperability standards.
As a result, large amount of data exists but most of it in silos, not accessible to systems that are different from the one it is created for.
Increased Costs To The People And Organizations
As mentioned in the previous two points, the lack of availability of data and interoperability standards increases the cost of care significantly. This is due to the repetition of tests or treatments as the reports from previous incidences are not available. Lack of data may also lead to less efficient workflows in hospitals, adding to the costs of the patients and the organizations.
Lack Of Reliable Data For Policy & Public Health Decisions And Research
In the absence of reliable data, regulatory authorities and policy makers often fly blind, observing obsolete and flawed protocols, or formulating policies that are not relevant to the current needs of the people. During the public health crises experienced among many developed countries recently, hospitals were rapidly able to implement new guidelines required to deal with the potentially dangerous epidemics like Ebola.
Similarly, lack of sufficient data is an impediment for the type of research which relies upon large data volumes to achieve accurate results.
Poor Spread Of Health Insurance
The maturation of the insurance market in any economy is dependent upon the availability of large amount of data. In India, health insurance industry, among other things, is hobbled with the lack of such data. The insurance companies do not feel confident enough to pursue this segment as aggressively, because they are not sure of the market size, needs, distribution and economic status.
Lack Of Medical Expertise In Rural Areas
A large proportion of the health workforce in India is made up of semi-skilled and poorly educated personnel. Even the doctors working in rural areas have difficulty in keeping up with medical advancements.
In such an environment, the Electronic Health Records (EHR) that have clinical guidelines and clinical decision support systems embedded in them can play a vital role in patient care and training of the workforce.
India’s Unique Position
Why is India in a unique position to undertake the development and deployment of a national level EMR? And why at this moment in history is it extremely necessary?
For several reasons:
  • India has a large, exceptionally talented and experienced IT manpower.
  • India is at the point of radical departure from how government provided healthcare for a billion plus people. A NITI Aayog proposal describes a new plan, under which the public health infrastructure, which used to be built by the government and managed by the doctors and personnel employed by it, is moved to a public-private partnership model.
  • Private doctors and private health facilities will now be the backbone of the national health service at the primary level. The government will reimburse the private healthcare entities based on the type and the volume of services rendered. Even at the secondary level, private hospitals of many different kinds will play a greater role in government health programs. With so many new entities, and both medical professionals and private businesses playing a role, the only way to make them part of a seamless network is by leveraging the IT sector to provide shared information infrastructure. Simply creating a new reimbursement model, without creating the required infrastructure, will lead to a nightmare in the future.
  • The field of health information systems in India has not yet been run over by several EMR monopoly companies. Such companies not only have little incentive to support the standards but are prosperous in thwarting them too. Without standards, each system becomes an island and does not communicate or share information with the others.
  • The national biometric ID project (UIDAI), or Aadhaar, provides an ideal solution to a problem faced by other countries, which is the lack of continuity of care due to the records of patients being fragmented across systems of different providers. In the US, for example, reconciling of records from different systems has always been a challenge since it is not always possible to definitively identify patients in different systems. ‘Aadhaar’ will allow the linking of all disparate records of an individual into one seamless record.
  • There are many large sized open source projects which the National EMR project can draw upon. Even in healthcare there have been many projects which may offer valuable lessons to the National EMR project. Some open source projects in the past have floundered or failed because there was no sustained support for them from a company or a government organization. Given an assurance of viability, many developers will be keen to participate in such a project.
  • The technology of web-accessed cloud-based systems has grown leaps and bounds in the last five years, while most current popular EMRs seem to be stuck with the technology from the early last decade. Any interaction with an EMR seems like one being transported back in time.

Once the large system becomes widely implemented and used, it is difficult to get rid of it for many reasons. The success and popularity of the VistA system and other systems derived from it puts them in the same category. The Indian National EMR could be built from the ground level using newer, extensible and scalable technologies.
General Contours of the Project
The EMR project should avoid the traps of any large project, such as trying to achieve grand goals through a centralized group of developers. Only the core and the framework should be developed. There should also be a set of standards stipulated for the development of components and extensions. Developers should then be encouraged to create multiple small open source projects, each creating a different component for the EMR, which are compliant with the standards, in order to be allowed for use within the framework.
Later, full EMRs could be created by picking the components that are appropriate for the needs of the persons creating them. Government should take the lead in funding such projects and give incentives to private companies for contributing to their success.
The government should also facilitate the creation of groups of leaders and users to specify requirements specific to their needs and the needs of the country. It should create mechanisms for interaction between users and the developers. An active participation from the medical community is a must for the success of this project.
This approach will not only bolster the open source culture in India, it will also lead to the formation of an entire ecosystem with companies joining in at different levels. Some companies could take a lead in the development of components and extensions, while others could be implementers who offer their services to different healthcare organizations. Some could even provide secondary data for policy makers and researchers.
Requirements And Unique Challenges
There is a large body of literature available that lists requirements which are absolutely necessary for EMRs, and those that are desirable, even if not necessary. This can be the starting point for the National EMR project. Many requirements for the National EMR system will be universal, that is, common across nations belonging to different economic classes. However, some of the requirements and constraints of India (and other developing countries) are unique; for instance, the lack of bandwidth and connectivity and the lack of a universal ability to use English, or poor literacy, pertain to our country alone.
An EMR of the current day has to be m-health centric. A modern EMR that India would develop will not only have leapfrogged the enterprise LAN based EMR; it would also avoid a pure web-based approach, focusing more on the smaller devices.
Benefits For India
Such a project will have many advantages for India, as detailed below.
Improved Healthcare For Indians
A national EMR will take Indian healthcare a notch up, by providing reliable, continuous and lifelong health record for every citizen. This will improve medical care and reduce costs. The costs are reduced by avoiding duplication of lab and radiological tests, and by quicker diagnoses being made by caregivers. Doctors will be able to track a patient’s record from their womb to their tomb.
As the economy improves, the people are more likely to move from one region to another for business, jobs or pleasure. The National EMR will ensure that a mobile population has continuity in their healthcare. The new doctor looking after a patient can start off health care from exactly where the previous doctor had stopped.
Public Health Impact
Public health departments will be able to initiate rapid interventions based on the signals being received automatically from the data entered by the clinicians in the EMR system, even as they take care of their patients.
For example, if multiple clinics in a locality start seeing patients with symptoms suggestive of a contagious disease, the authorities could jump into action to prevent its spread across the country. A potential epidemic would be detected and a much wider hazard averted.
Data based methods have proven to be an effective tool to detect “hot spots”, which are areas prone to develop chronic health-related problems. If the EMR system is linked with other sources, it will be allowed to identify such hot spots and alert the clinicians, and the government health officials will be on guard for diseases that are prevalent in their areas. This will be an example of the ‘Big Data’ technology being used for public as well as individual welfare.
The data will also be useful in making policies about health and general welfare of the people.
Health Research
A shared data system will allow biomedical researchers to access a rich trove of data, allowing them to make significant discoveries. This acquires special significance as more and more genomic data becomes a part of standard medical care.
For Indian researchers to make a mark in this field, and to be able to create data sets that are more relevant to the Indian communities, access to a large pool of data is of paramount importance.
Innovation Spurt In Technology
The effort of developing a modern EMR that is scalable to a national level, will lead to the creation of an ecosystem of expertise dealing with technologies like mobile telephony, sensors, artificial intelligence, big data etc. Academic institutions as well as companies will find niches of interest in the ecosystem.
Innovation in technology in India slipped considerably in the last decade. Launching a project of this wide a scope can be the trigger to launch India into a new era of innovation.
Boon For Private Sector
Private sector can start building specialized features or provide fully assembled EMRs customized for the needs of the individual provider organizations. Examples of innovative features include using Big Data and Machine Learning technologies to predict outbreaks, detecting hot spots, and determining efficacy of traditional medicine remedies and unconventional approaches. There are many potential ideas waiting for budding entrepreneurs in the field, and the project would give rise to many startups. This has the potential for bringing about the vision of smart health as underlined by Arvind Gupta. (Digital India - Smart Health for Smart India)
Standards Based Approach
As mentioned earlier, it is an uphill task to get organizations to agree, and to follow standards once they have deployed an EMR of their own or from a private company. Without interoperability, data collected in one site is difficult to be used by other hospitals or researchers.
At present, the US is going through a program of trying to coax everyone to adopt interoperability standards, and it is discovering just how difficult such an effort is.
India can avoid such barriers if it quickly makes available the standards compliant EMR for everyone before several independent systems gain enough primacy in the field to be able to impede standards. With a standards based approach, data from any doctor, hospital or region can be treated as part of the same data set without having to worry about incompatibility or loss of meaning.
Increased Soft Power Of India
Finally, since the development of the National EMR will be an open source project, it will considerably improve India’s image and soft power internationally. The developing nations will be extremely grateful for such a gift from India. Such an EMR would be something that even a large developed nation like the US will be inclined to adopt, if done well.
Funding, Feasibility And Impact Study
The National EMR project would be considerably cheaper than many other national programs; certainly less expensive than the UIDAI project, and yet the returns could be as great if not more. A rough estimate from projects of a similar nature allows us to show that the software development and the infrastructure for pilot testing with 20 healthcare centers across the country would cost approximately Rs 25 crore.
Subsequent scaling to cover other locations would be much cheaper. Since the plan is to move it to public-private partnered control, much of these costs will be absorbed by private investments. The private organizations may be subsidized by the government but their actual profits will be by offering services to the private organization for deployment and customization for their locations. However, since this is a subjective impression, we recommend that a study be commissioned to evaluate the feasibility and impact of such a project.
India is at a critical juncture in its evolution, and a National EMR will allow the unification of its many health services into a seamless system, thereby giving added impetus to its economy and development. It will improve the welfare of its people and increase the efficiency of its medical professionals. Additionally, it will be catalytic in triggering a new wave of innovation allowing India to claim technological leadership globally.
India has all the elements needed to make such an ambitious project successful. It has the technical know-how and a workforce to implement it, along with its Aadhaar program, which will play a major role in unifying health records nationally.
The National EMR project will be a great boon to India, in terms of its economy, the well-being of the nation, the welfare of the people, and goodwill around the world. Few projects have such a transformative impact for so little an investment.