Data — the most valuable asset of the 21st century is being generated and harvested extensively to gain detailed insights into our everyday lives. The technology advancements in the late 20th century have enabled not only to provide just insights but rather to provide actionable insights. The way the digital products, platforms, and solutions have evolved over the years is commendable and paved the way for companies or individuals to have an in-depth understanding of activities and behaviors using data. This has led to the advancement of the juggernaut — the Data Marketplace. Data Marketplace offers everything from a single source, where data generated from the collection of digital devices can be bought. The advent of Big Data technologies made the data computations faster, and advanced cognitive technologies have improved it. According to a research study by Accenture,  the data marketplace will potentially unlock more than $3.6 trillion in value by 2030 globally, driven mainly by IoT devices. The report also mentions that medical devices will experience the second-highest growth rate (20.8% CAGR) after industrial devices. This reveals how vast the potential is for data sourced from medical devices in the near future.
The Fragmented Data
The Healthcare Industry is sitting on top of a Himalayan data pile, most of which are slowly being converted from physical copies to digital ones. Several pharma companies have already adopted the digital route, and the statement “Reimagining Novartis as a medicines and data science company” by Vas Narasimhan, CEO of Novartis, just reconfirms it. He also mentions that the decades of data and the dataset that Novartis has built is a goldmine when taken full advantage of, which can transform the way they are developing medicines. All healthcare providers collect mammoth amounts of information from patients — be it the birth records or the multiple diagnostics tests conducted throughout the patient’s lifespan, or even the cause of death information, in case of the demise of the patient. In addition to hospital records, online symptom checkers, fitness trackers, home exercise equipment, etc., also collects data about individuals. Some of the data sources from which the health information of individuals can be obtained are,
Patient health records
Wearable like fitness bands
Home exercise equipment like Peloton
Healthcare software like web or mobile applications such as sleep trackers, etc.
Medical devices and sensors
Web data like symptom checkers
Clinical trial data
Governmental data sources like the Ministry of Health and Family Welfare (MoHFW)
The data sources mentioned above collects data of individuals at multiple instances, and there is no connection between them all. Also, since multiple parties collect the data, the storage and exchange of data occurs by anonymizing personal information, thus fragmenting the data further.
Putting The Pieces Together
It is not easy to piece together the jigsaw puzzle of healthcare data. For consolidating data from multiple parties, a primary key is required to match the profile across multiple data collection dumps. But regulations like GDPR, HIPAA, etc., prohibits the transmission of sensitive information between multiple parties, which prevents the fragments from piecing together.
Tools like CRM (Customer Relationship Management) or CDP (Customer Data Platform) can help in creating a persona of individuals by consolidating data from multiple digital data sources like Facebook, Twitter, etc. The same cannot be said about healthcare data, as it is not publically available since it’s sensitive data, and there is a lot, including the lives of individuals at stake. In order to overcome this hurdle, many players are following two steps.
.Synergize with other players in the healthcare domain. Examples include GOQii partnering with Max Bupa and the Swiss Re Group; Fitbit partnering with the American Heart Association, Leukemia & Lymphoma Society and others. We might even see a partnership between an HSP and a wearable company in the future, which can bridge the gap between the data fragments and provide a holistic view of patient data.
2.Use the extensive chunk of available data, process it, and improve their service offering. Examples include Merck, Novartis, and others partnering with IT service providers for digital transformation and next-gen cognitive intelligence computing.
In India, hospitals like Apollo Hospitals, Fortis, etc., have already started the digital route. Apollo Hospitals have partnered with DXC Technology for a multi-year program to help them harness the power of innovation and guide their digital transformation journey. The 2019 annual report of Apollo Hospitals reveals the digital initiatives taken by Apollo. “The [Apollo] Group’s partnership with Microsoft to develop and deploy new AI and machine learning models to predict patient risk for heart disease and assist doctors on treatment plans, is the first step in the journey towards AI-based predictive health across the disease spectrum. The Oncology hospital in Chennai has deployed IBM Watson for Oncology and Genomics, which leverages cognitive computing to provide insights to oncologists”. In addition to this, they have partnered with Google India to offer “symptom search” in Google’s search offering.
Source: Deloitte Analysis
Security, Privacy and Personalisation
With approximately 100 Terabytes worth of data being generated by a normal tertiary healthcare clinic every year, the medical data is in ranges of multiple petabytes overall in India every year. Regulations like GDPR states how data has to be stored, handled and processed. Also, GDPR doesn’t restrict itself within the EU, rather it’s boundary-less and applies to all countries which handle the data of EU citizens. If it’s the US, then there is HIPAA, which is mandatory. Failure to follow these regulations will lead to hefty fine amounts, and it has to be noted that all these regulations are to ensure that the data are safe and handled properly.In India, the EHR STANDARDS clearly sets standards on who is the owner of the data. The patient is the owner of his/her Sensitive Personal Information (SPI) and the medium of storage and the transmission will be owned by the healthcare provider. The Patient owns his health data and has control over it. The healthcare service provider (HSP) should protect and secure the data on behalf of patients. The below snippet will give a glimpse of the EHR standards.
With multiple countries in the race to be a leader in the healthcare domain, personal data like clinical trials, diagnostic results, etc., prove to be very valuable. There were multiple instances in the past where these data got stolen and later ended up in the dark web for illegal sales. Few include the breach of Anthem Inc.,  which happened in 2015, and the recent breach which happened in India was carried out by Chinese hackers. There should be strict laws in India to curb such instances. India doesn’t have a Data Protection act yet. The Data Protection Bill, which is still in the drafting phase has mentions of fines upto ₹2 to ₹3 lakhs with a jail term of 3 to 5 years, if there is any mishandling of data being identified. There are other benefits in the bill, like provisions for porting data from one company to another. This empowers the patient to port data of his past medical records from one HSP to another. The alignment of HSP towards Pharma 4.0 ensures that mass customisation of composition of medicines and dosage can be done based on demographic and other categories. The backbone for such activity will be the presence of enormous amount of data which can be leveraged for customisation of medicines and personalisation of treatments. Data Availability After Demise The data availability, after the demise of patients, varies from country to country as there are different laws of the land governing it. According to HIPAA in the US, the law ensures the availability of health records for 50 years even after the patient’s death. In India, the EHR standard mentions that the medical records can be made inactive and archived after three years from the death of the patient. Also, the digital archiving and retrieval of medical records should be supported for the total duration as specified by the Government of India from time to time. EHR standards also mentions that, since there is a rapid decline in costs of data archiving coupled with the ability to store increasing amounts of data that may be readily accessible, it is prefered and HSP’s are strongly encouraged to ensure the records are never destroyed or removed permanently. This means, even after a patient is deceased, the data stays forever unless there is another law being passed, which supersedes this.