`The HealthID of National Digital Health Mission' - A boon or a bane?
The PHR or the Personal Health Record; these are more on the patient’s side, and the patient maintains their health records, and it is in the patient’s control
The Union Govt of India launched the Digital Health IDs under the Ayushman Bharat Digital Health Mission in the last week of September under National Digital Health Mission (NDHM). It is in a pilot phase right now, and it is getting implemented in the six Union Territories of India. Some welcome it, and there has been some opposition to this program as well, and it is worth taking a deep dive into this.
Indians, most of us, do not give importance to regular health check-ups and preventive care. When the attitude towards health is at such a stage, there is no wonder that the number of people with documented records of their health history is next to none.
Whenever we visit doctors, they usually prescribe on a paper. The prescription usually has essential things like Date of Birth (or approximate age), Date of visit, the vital signs recorded like Pulse rate, Blood Pressure, height, weight, and the (probable) diagnosis and prescribed diagnostic test and medications. Some doctors are meticulous to the extent that they record what brought the patient to the doctor (symptoms) and their own observations (signs) findings from a physical examination.
So far, so good; the problem is when we revisit the doctor, most of us do not take the prescription, or worse, we lose it. It is difficult to give care (treatment) as the doctor loses context and needs to re-establish history, current treatment, and medications. Often, the complete information is not passed or mixed up, resulting in gaps in care.
There is also a bigger problem with our pharmacy setups and how they work; people usually walk into the pharmacies and ask for tablets describing their illness and are given medications – many times, even schedule H drugs like antibiotics are provided without a proper prescription from a qualified physician. There is another practice where a prescription/medicine is carried on forever by using either photo of the medication or by using the medicine names. These are practices that could make the patient sicker and make the prognosis worse.
Electronic Health Records (EHR) help to solve the problems mentioned above. Simply put, they are your digital health diary holding information of every illness, every visit to a doctor, the symptoms, and findings by the doctor. They also typically have test results and prescribed medications with date range and follow-up dates. Some systems send this electronically to [pharmacies in the network as well.
These EHRs are supposed to be portable from one system to another with ease so that when patients switch hospitals/doctors, the records are not lost.
Then there is another equation: the PHR or the Personal Health Record; these are more on the patient’s side, and the patient maintains their health records, and it is in the patient’s control. Sometimes the EHR systems share some data with the patient – like a discharge summary outlining the hospital stay.
In this era of personal smartphones and smartwatches, all the data these devices collect and store about an individual’s exercise, sleep, heart rates, health emergencies are considered PHR.
In the US, some form of EHRs has been in existence since the 1970s. Now they have evolved into very complex systems, and there is a lot of regulation set forth by the US health department. There are incentives like the popular Obama care program to encourage physicians to adopt these systems.
The US healthcare system grapples with issues like too many standards to follow. There is also a big problem of interoperability standards, which help in understanding data across multiple systems, and there are a lot of issues around ownership of data.
There is no cartelization despite the presence of humongous healthcare IT players in the US. Patient privacy is given at most importance. There are multiple laws and systems to protect the same; for example, the HIPAA, or Health Insurance Portability and Accountability Act helps them protect patient privacy and even privacy of a subscriber to a health insurance plan.
There are very severe penalties and punishments for anyone who violates these laws. Even companies in different countries like India and their employees come under the purview of HIPAA if they do any development or processing work that contains Personal Health Data.
The mission aims to create a holistic digital health eco-system of patient records, hospitals, doctors, and other private entities. The NDHM would create a health ID with the person’s Aadhar or driving license or mobile number. The Health ID is in turn used to create a health record for the person. The hospitals/participating systems in the mission share and use the health record.
The Govt. says that the person is in complete control of the health ID and that the system will not share the health record until the patient consents. The Personal Health Records will be linked to this account and made available online.
The ecosystem also has a registry for doctors, hospitals, private hospitals/clinics, other private players, and even individuals to register in this ecosystem. The idea is to enable all these entities to use the patient data and update it as required.
In the second week of October, the former Indian Prime Minister, Mr. Manmohan Singh, was admitted to AIIMS Delhi for treatment. The controversy broke when the Union health minister tweeted a photo. The family objected to the photograph. Ironically, the Union Health Minister violated the privacy of an ailing former Prime Minister of the country. Privacy at best is a poorly understood concept in India, and privacy in healthcare is wishing for the stars.
Many people do not understand privacy and consent when it comes to their data. In this case, the Union Govt. does not seem to understand the sensitivity of this either. The privacy net around this is built on the Personal Data Protection (PDP) Bill, 2019. Yes, you read it right; it is still a bill and not even an act or law yet. A Joint Parliamentary Committee is yet to review this bill. Taking this Health ID mission without such an act in place is a disaster of epic proportions. We are speaking about the health data of a billion people online, across public and private entities, aided by the Govt. without even a framework or law to protect privacy.
There is another hidden issue here that. There is already a Health ID created for everyone who took a COVID vaccine in India for all practical purposes. Whoever scheduled a vaccine appointment with the CoWin site had a health ID generated in the backend.
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One of the reasons that the Govt. gives for this initiative is that different entities will use the Health ID to determine the eligibility of Govt.’s Ayushman Bharat Insurance Scheme. However, there were health cards created for this purpose already as part of the Insurance scheme. It is very apparent that, though the Govt. says that the Health ID is voluntary, it becomes mandatory to get benefits under the Govt.’s healthcare and insurance programs, just like multiple agencies force Aadhar on everyone for almost everything. There have been already instances of forcing people’s hands – students and employees of PGI, Chandigarh were told that it was mandatory to create the Health ID though they withdrew the order later.
The biggest threat in this whole process is the possibility of cartelization by private players. All this data can be used to target to sell products, insurance, exclude regions and areas prone to specific diseases, and even understand their health and lifestyle data to deny insurance or charge a premium at an individual level. There have been serious concerns raised on companies like Facebook across the world for how it uses data to target individuals with Ads, products, and services and how some of this data is weaponized against people, groups of people, and even countries. It is said that Data is the new Oil. So much health data will be too much power in the hands of wrong entities without enough provisions for privacy protection.
Companies like Practo, 1mg, among others, offer their solutions and products to NDHM. While there is nothing wrong with a PPP initiative, the NDHM should place enough safeguards. iSpirt and SWASTH are involved in the planning and development of the platform; SWASTH, for example, has people from General Atlantic, Flipkart, among other companies. The media, general public have raised alarms on the role of these entities and transparency. The NHA, of course, has denied all these and says it has enough safeguards in place.
Last but not least, healthcare is a state subject, and the Union Govt. taking up such programs unilaterally and then asking states to implement this is clearly undermining the federal structure.
In Conclusion, India has so many things to get right in healthcare, for example, Primary Care accessibility, Doctor-Patient ratios, affordability. Creating such a platform is not a priority at this point, especially when even countries with electronic healthcare systems for 50+ years are still struggling to get it right. Technology giants like Google and Microsoft have tried to enter the PHR market and abandoned the projects as they learned the complexities the hard way. Maybe we need to pick our battles as a country.
“The road to hell is paved with good intentions,” said a wise person. It is in the hands of the Union Government to correct the issues, address the concerns and stop creating one more Frankenstein’s monster.
- Sathyan Rajendran, Healthcare IT expert, political commentator, GCPP(HLS) at Takshahsila institute.