Digitalisation of healthcare in India is a game changer but it must be done with caution and awareness of the challenges associated with it
Subject to the consent of the participating individual/patient, their health data will be made available for use by the treating doctor or physician, and more parties such as health insurance companies.The involved digital infrastructure for storage and accessing this data will be built on the National Health Stack. The stack is a collection of pre-written code (or commonly referred to as APIs) specific to interface with the ABDM system. This will be one platform where those interested (and approved) file for insurance claims, can perform analytics in addition to storing individual health data and hosting the repository of various medical agencies. This health stack will also integrate with payment gateways. Currently, around 14 crore users have enrolled for a health ID with the ABDM and the programme has been piloted for a year in six union territories in India.
For a country where rates of computer illiteracy are high, interfaces need to be kept simple and should be more user friendly.Third, one of the most important concerns is related to data protection. In the absence of data protection laws, both storage of one’s health data and its use will need to be governed by well laid down rules, even if there is consent by the individual/patient. Currently, there is a Data Empowerment and Protection Architecture (DEPA) drafted by the NITI Aayog in 2020 to govern access of such data by public and private agencies. The DEPA involves the use of ‘consent managers’ that will act as an intermediary between the individual and the agency seeking access to your data. The consent managers will not have access to the data but merely facilitate sharing of the data subject to the individual’s consent. The DEPA draft is more aligned to the financial sector wherein rural individuals or small-medium enterprises need to seek loans or access insurance services. For ABDM, the DEPA entails that if the individual/patient provides consent then their data can be shared to the agency requesting access. Granting of ‘consent’ to a doctor or any other involved agency such as insurance companies should not mean that the data can be used for any other purpose than what the consent was granted for or be stored by them locally. All involved parties would need to comply to protection of such data and put in place measures to adhere to data protection norms. The involved human resource should be sensitised and trained on protecting such data and in maintaining highest level of data privacy. ABDM claims that the individual is at liberty to deny consent in sharing their data; however, this may lead to some penalisation of the individuals who do not provide consent. For example, an insurance company may incentivise those who consent to share their electronic health data and make processes more rigid for those who do not. Additionally, in some cases, consent may be sought from the organisation and not the individual. This would bypass individual consent for each request and needs another set of data governing rules, which are well-advertised and explained to the individual providing consent. There is an important concern with the overall objective of the ABDM. The ABDM is being ‘marketed’ as a service provider to redefine how healthcare is accessed by Indians. In the current form, ABDM lays little emphasis on the use of this health data by the public health research community. Electronic health records are most useful to public health research. In the absence of electronic health records, data for public health research studies is usually collected by public health agencies or research institutes as part of an ongoing or new study. This requires time to plan the study, recruit participants, and train field staff before the actual data collection. To facilitate longitudinal analysis, such data collection also needs to be carried out at pre-decided future intervals that could be months or years apart. The limitations to this include high cost and lengthy durations of time. Having access to pre-collected data will address both these limitations. Most importantly, data from the health ID is likely to be more complete as compared to most hospital records in India, which comprise of paper prescriptions or manual register entries.
The ABDM is being ‘marketed’ as a service provider to redefine how healthcare is accessed by Indians.The COVID-19 pandemic has made it clear that to obtain evidence-based findings real-world data needs to be available. While there is no doubt that with prior health records, a doctor or physician can flag the severity of COVID-19 for someone who has a history of diabetes or blood pressure, the reverse of this is also true. Using medical history and disease end-point data, unknown risk factors of the disease can also be identified. This would require that electronic health records be made available and supplemented with additional information of the patient such as lifestyle. For western countries, electronic health records are maintained at the hospital level, and they commonly store responses to basic lifestyle questions as part of the patient’s health record. Having data on exposure variables is most crucial to public health studies to identify new risk factors of diseases. In the ABDM context, this could mean that if any public health research wants to use ABDM health data then they will also need the identifying information of the individuals to contact them to seek consent to be recruited in the study. They could violate data protection and make ABDM less conducive to public health research because data on exposure variables can be collected only once the individuals are recruited. For a country like India, population-based public health studies are very few as compared to western populations. Non-availability of data is a strong detriment. A system like the health ID under the ABDM must cater to this lacuna and efficiently utilise the currently proposed framework. Overall, the ABDM is a step in the right direction. Its aim is to digitise the health sector and improve healthcare access for Indians. Just like any new system, the ADBM is not without its challenges. These challenges detailed above can be addressed but are also subject to will, and availability of time and resources.
The views expressed above belong to the author(s). ORF research and analyses now available on Telegram! Click here to access our curated content — blogs, longforms and interviews.
Dr. Ekta Jain has more than 13 years of experience in bioinformatics epidemiology data analytics databases andcomputer programming. She was a recipient of the National ...Read More +