Integration of standards-based interoperable health data across the nation is one of the key objectives of the Ayushman Bharat Digital Mission (ABDM) to integrate, strengthen, secure, and transform India’s health system. The value of digital integration is already being felt across many other sectors. Financial data integration through a unified payment interface (UPI) is the classic example of the transformative capacity of digital data integration.
Since its launch, ABDM has been implemented nationwide through National and State Health Authorities. The digital health architecture is mainly guided by the National Digital Health Blueprint (NDHB) building upon the existing national digital architecture laid for Aadhaar. Its Open API architecture allows for the integration of a variety of digital applications like hospital information management systems (HIMS), laboratory information management systems (LIMS), electronic health records (EHR), personal health records (PHR), disease surveillance systems, etc., designed for managing health data.
While doctors, hospitals, diagnostic laboratories, pharmacies, public health departments, health insurance agencies, etc., have been using these applications for managing their health data to varying extents, they do not share their health data unless needed for claiming insurance bills, for surveillance of notifiable diseases, and medico-legal purposes. Many currently used applications may not use defined health data standards; hence, they cannot be integrated across a larger system. While financial and regulatory levers can be used to force various users to come on board, the adoption will be much faster if users see value in coming onto the national digital health data highway. In addition, there are mounting concerns about data security and privacy.
Since the larger purpose of ABDM is to improve the health of people and be responsive to their health needs, the use case has to begin with people who struggle to preserve their health records in one place. In addition, their health data may be in digital or hand-written form. While digital data may not follow standards, hand-written notes are not always legible. Patients gather their health records from multiple providers, making it all the more challenging. Healthcare providers may not have the time and patience to go through the pile of papers and electronic documents that people carry. Often, people misplace their health records. Scanning their health records and storing them in digital format does not solve the problem. ABDM-compliant PHR applications aim to provide a permanent solution to the vexing problem stated above.
Even if people have PHR applications on their smartphones or tablets, they will not be of help unless their healthcare providers agree to link their essential health data (demographic, clinical, diagnostic, and therapeutic) with their PHR. The other way is for people to capture their health data in varied forms, including from wearable digital tools to their PHR. In addition, the PHR data should be presented in a way that the users can navigate their health data intuitively and share it selectively. Hence, a lot of vendors are focusing on superior user experience (UX) and user interface (UI) to compete. People will start seeing the value in having the PHR when they experience the benefits while visiting the healthcare providers (doctors, labs, drug stores, hospitals, insurers, etc.,).
People spend enormous amounts of time waiting in queues at registration counters, billing counters, consultation rooms, diagnostic areas, pharmacies, etc. QR code-based data sharing (‘scan’ & ‘share’ system) has simplified the processes at many facilities where these applications are being pilot-tested. One-time password (OTP) based systems have become the norm in the authentication of people accessing secure personal data. The same is being adopted for sharing PHRs when needed. However, to experience the benefits, the providers should be using ABDM-compliant digital applications in their facilities and practices.
Doctors kept their clinical notes of their patients as a means to remember what each patient had when they came back for consultation. When hospitals came into being, these notes were used to inform other duty doctors to know about the patients and nurses to execute instructions. With the advent of health insurance, these records became a means to reimburse fees for documented services. Courts started depending on the medical records for arriving at their judgments. Researchers use these records to cull out needed data for their research from the medical records.
However, when doctors are mandated to document these electronically, it has unintended adverse consequences. Doctors started resenting the mandate to enter data into IT systems. In addition, they started spending more and more time on documentation than actually spending quality time with their patients. They perceived that the change did not contribute to improved patient care. However, when they can access comprehensive essential patient health data in one or two digital screens when patients consult them or when they do the ward rounds, they see tremendous value in this solution as they have to spend less time compiling all the health data a patient has and they are less likely to miss important data from the past and from different providers.
Hence, doctors see tremendous value in sharing and receiving data if someone enables it rather than being made to enter and share data. Secondly, they do not need to see all their and other doctors’ notes, if they can have a summary of diagnoses, test reports, current drugs, procedures done, and vitals in one place with the facility to access the underlying data behind the summary screen. Almost all doctors now have smartphones and tablets and have become digitally savvy in using other digital everyday applications. Social media applications offer an example of an intuitive user experience for health applications to learn from. Instead of getting mandated, doctors will start demanding these applications if they see and experience value in ABDM-compliant PHRs and other applications.
When doctors get connected with other doctors and facilities by being part of a larger ecosystem, they start seeing value in it. They can refer and schedule an appointment for their patient and vice versa. They become more visible and accessible to other providers and patients within a large hospital system and in a given geography or specialty. By being part of the ecosystem, they can access non-personal data for their research. They can think of building a disease registry or being part of one. They can get their health insurance claims processed much more easily than what they go through currently. In addition to the perceived and real value, doctors would want the applications to be easy to use and affordable. They drop out if they find that the health data highway is riddled with potholes and speed breakers!
Increasing data privacy and security concerns deter many users from integration unless they are fully convinced of it in action. Periodic news of health data breaches across the world does not aid in their willingness to adopt. Another concern that comes out of ABDM implementation research is about statutory bodies like tax and licensing authorities coming after them if they gain access to the data. Market concerns about the competitive advantage of data also make users possessive of the data they gather. Mounting online fraud in the financial sector is a growing concern. Hence, the digital ecosystem should address these challenges and concerns to the satisfaction of the users for greater adoption.
Governments can use various levers to encourage and take adoption to a critical level for it to accelerate. While they can enforce adoption in public healthcare systems, they have to use other strategies to drive adoption. Peer-to-peer education and communication based on their correct understanding and experience will be vital. A hundred microsites are being piloted to drive adoption in a given ecosystem. In addition, the adoption can be driven through public and private health insurance or payer systems. The COVID-19 pandemic has brought out the importance of robust surveillance and prompt alert systems to prevent future epidemics and pandemics. In fact, the International Health Regulation (IHR) mandates all member nations to have robust disease surveillance systems. Hence, governments can also use regulatory levers under IHR to influence adoption by all healthcare providers. Digital transformation of health systems is inevitable. It requires collaboration and coordination of multiple stakeholders – both public and private for the mission to succeed. We should also take care that the transformation is equitable to avoid the digital health divide that becomes another key social determinant of health.
