There are concerns over digital health data being used by insurance companies to reject insurance applications and push up premium rates for those with pre-existing medical conditions.

The NDHM has set for itself a five-year plan to roll out its digital health ecosystem Source: HealthID/ndhm.gov.in
news Health Policy Saturday, October 09, 2021 - 11:47

Anitha Kumar*, a healthcare professional from Bengaluru, counts herself lucky for having health insurance. She has a pre-existing medical condition, thalassemia, a genetic blood disorder that makes it difficult to get health insurance for her. “In India, no insurance is currently covering genetic disorders. That's an exclusion criterion,” says the researcher, who finally managed to get health insurance in 2006 and has since found it useful. “Very few get health insurance, I was one of the lucky few,” she says.  

However, Anitha feels the Union government's plan for Health IDs will make it even harder for those with disabilities to procure health insurance in the near future. “It will make it worse. The insurance companies will reject applications, left right and centre,” she adds. Similar concerns are being raised by doctors working on public policy and privacy advocates. 

On September 27, Prime Minister Narendra Modi launched the Ayshman Bharath Digital Health Mission, also called the National Digital Health Mission (NDHM). Under this programme, the Ministry of Health and Family Welfare (MoHFW) will generate a 14-digit unique health ID for each Indian citizen. As of Thursday, October 7, 12,73,03,614 Health IDs have been generated under the NDHM.

The logic behind this effort is simple: a Health ID will enable patients to store and access their medical records, such as prescriptions, diagnostic reports and discharge summaries. This allows a patient to switch hospitals and also share their medical records across health care providers. The Health ID will be linked to the Health IDs of your family members and as per the National Digital Health Mission's strategy overview, these medical documents will be made accessible to doctors, hospitals, clinics, laboratories, pharmacies and insurance companies.

The task of implementing the NDHM and building the required technological infrastructure for the Health ID and its supporting ecosystem is with the National Health Authority (NHA). The NHA was first created in 2019 to oversee the implementation of the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PMJAY), a universal health insurance scheme. Meanwhile, the NDHM has set for itself a five-year plan to roll out its digital health ecosystem. 

Will know the benefits in future

However, the Health ID is an innovation that bears fruit only sometime in the future, says Dr Akshay S Dinesh, Independent primary care practitioner and public health researcher. "We cannot know the benefits of this system now. Some are claiming that once the Health ID system becomes operational, it will make health and term insurance premiums cheaper. But the Union government hasn’t clarified yet the mechanism that will bring the premium rates down. For now, it’s only a claim," he says.

Between 2020 and 2021, private insurance providers in India had hiked premium rates for health and term insurance by 10% to 15%, some even raised premium rates by 30%. The reason for the rate hike was attributed to higher insurance claims owing to deaths due to the COVID-19 pandemic.

When a pre-existing problem gets amplified 

It’s already difficult for people with pre-existing conditions to get health insurance, says Gagandeep Singh Chandok, President, Thalassaemia and Sickle Cell Society of Bangalore. With their conditions being amplified under digital scrutiny, it could make it tougher. 

“We do not have life or health insurance. Only a few companies provide for exceptional cases and the premiums are high. Already, there is a large percentage of rejections because we have thalassaemia. Even if we have health insurance, it gets difficult to get claims approved. The claims get rejected because they link the medical emergency to thalassaemia," Gagandeep says, adding that the Union government must take measures to prevent the situation from getting worse under the NDHM.  

Dr Akshay points out that people who need healthcare the most are the ones who get admitted to hospitals more frequently. “Hence, there will be more data generated on their health. The greater scrutiny of health data could create a situation where people who need insurance the most struggle to get it," the doctor warns. “It’s a little hard to believe that private insurance firms will use the health data of people to give cheaper premiums. What can usually happen is that they will use the data to give worse premium rates," he adds. 

Gagandeep views Health ID as beneficial for Persons with Disabilities (PwD) as all their medical health history and disability certificates will be accessible to the health care provider in one place. "If used with the right controls, this system can work,” he says. 

“But the Union government should intervene and ensure that the health insurance companies do not misuse the data for rejecting insurance applications and claims. They need to monitor who uses this data and how the data will be used," he adds. 

The National Family Health Survey (NFHS-5) finds that health insurance coverage increased in the last five years in 15 of the 22 states and union territories surveyed. Apart from households in Kerala, Telangana, Andhra Pradesh and Assam, other states have less than 50% households with at least one member covered under a health scheme. 

In his primary health care practice, Dr Akshay finds most of his patients fund medical expenses out of their own pockets. "Many of my patients have HIV and have been historically denied access to insurance. Most don’t have insurance; only one insurance company provides the service and that too only if the immunity level is good,” he alleges.

NDHM hopes to make the process of health claims efficient and will adopt the recommendations of the Joint Working Group between the Insurance Regulatory and Development Authority (IRDAI)  and the NHA. Their task is to create a common IT infrastructure for processing health claims to both government and private insurance entities. The aim is to create a standard e-Claim form that can be used for any health insurance claim.

Data standardisation 

Under the National Health Data Management Policy, the data generated from hospitals can be anonymised or de-identified in an aggregated form to facilitate health and clinical research, academic research, archiving, statistical analysis, policy formulation, the development and the promotion of diagnostic solutions. Other purposes may be specified by the NDHM in the future. The NHA is tasked with ensuring the accuracy and quality of the health data being generated. 

In its policy document, the Union Health Ministry acknowledges that the current adoption of data standards is extremely poor across health care providers and plans are afoot to standardise data across the country. 

The standardisation will apply to data generated through diagnostic reports (microbiology, pathology, and radiology), the discharge summaries for all inpatient treatments, clinical notes for inpatient and outpatient encounters, prescriptions and immunisation records. The task of digitising the data falls on healthcare providers, hospitals, hospital chains, private clinics and others who will have to adopt software that enables them to digitise the data. 

Dr Akshay says this is going to be challenging especially for understaffed hospitals, and overworked doctors and nurses. "There are different kinds of standards for different types of medical data and there are competing standards as well.”

Health data to guide policymaking?

The proposed analytics platform will have advanced analytics tools, including data visualisation tools to generate a wide variety of reports that would be accessible to policymakers, researchers, and the public. The data from the analytics platform will also be made available to any interested stakeholder under the NDHM Data Sharing Policy. The Union government promises that the data will not contain any personal information and will follow all relevant laws, rules, and regulations, most of which are to be developed by the Ministry of Electronics and Information Technology (MeitY) and Health Ministry. 

However, there is a risk of health inequities being perpetuated if we solely rely on data to make policy decisions, says Dr Akshay. “When more data is generated from the urban area than from rural areas, we risk formulating policies based on the skewed data. In urban areas, doctors will say the most common heart disease is cardiovascular disease due to the building of fatty tissue in the arteries; but in the rural areas, it could be due to other conditions like rheumatic heart disease. But most of the data on this is from urban areas. This could prove to be a disaster if we are not careful about what kind of data we are collecting. We can't say just because we have more data, the health care policies will improve," he adds.

Srinivas Kodali, a privacy advocate from Hyderabad, says all the work being under the NDHM through the NHA is not backed by any law. “It’s like how the UIDAI operated without legal backing until the Aadhaar Act was passed. But by then Aadhaar was already in use,” he points out. 

Srinivas says India is moving to a US model of healthcare. He elucidates, “In the US if you don’t have health insurance, you pretty much won’t get health care and insurance is where the money is for private players,” says the researcher. In the US, under the Patient Protection and Affordable Care Act, 2010, insurance companies can’t refuse coverage to those with a pre-existing condition. There is also the Health Insurance Portability and Accountability Act of 1996 (HIPAA) which sets national standards in the US to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. In India, however, though the NHDM policy urges that consent of a health ID user be taken before the data is shared, there is no statutory protection. The Personal Data Protection Bill, 2019 though introduced in the Lok Sabha is yet to be passed.

”We are moving to a system like in the US, where a healthy person pays less amount as premiums for many years. When you get old and need the insurance, the insurance firm will take care of your health care needs. But if you are known to have health issues, which are reflected in your electronic health records, you will have to pay higher premiums,” says Srinivas. 

*Name changed upon request

 Read: Privacy concerns loom as Union govt begins Health ID enrolment in Puducherry

 

 

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