Impact of data democratization on the healthcare ecosystem
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The data-driven business transformation in healthcare
Data democratization has garnered interest in driving data-driven business transformation across multiple industries. This article emphasizes the various forms of data democratization that help realize its value in healthcare. With the exponential growth of health data, the desire to derive valuable insights is also growing and that will be fuelled further by data democratization.
Healthcare data market is considered one of the most advanced forms of realizing data democratization and it enables a robust, scalable, and interoperable ecosystem. Recent traction in health data interoperability boosts the prospects of a healthcare data market to enable an effective and efficient health data transfer within the healthcare continuum.
Data sharing: Key to fostering innovations in care management
While the healthcare industry is witnessing a substantial growth of health data (electronic medical records, device data, and so on), it has been unable or unwilling to share the data or collaborate within the industry. This constrains the flow of data among the ecosystem participants—both health and non-health sectors. It is only now that due to a change in the mindset—to a certain degree—that the industry has realized the need to enable data sharing.
It is evident that the free flow of data is required to benefit the consumers who are at the center of the health ecosystem by enabling better health outcomes and fostering innovations in care management. At its core, data sharing and democratization require an open mindset, leading to adoption of technological and cultural shifts.
Interpreting ‘data democratization’
Data democratization has garnered attention and interest from across all industry verticals in achieving data-driven business transformation. A wide range of definitions, understanding and interpretations exist today about data democratization. We attempt to define data democratization—encompassing as much as possible—in alignment with the healthcare industry’s trends and demands. We also anticipate that the evolving trends in healthcare industry will keep reinforcing this definition but that the foundational belief will stay intact.
Data democratization is, ‘the freedom to demand and responsibly consume data, bound by foundational governing principles defined within the ecosystem, through the autonomous checks and balances enforced by governing bodies’.
The hurdle to data democratization
When it comes to data sharing and interoperability, the healthcare industry has been lagging behind other industries. Traditionally, volumes drove payments rather than care outcomes and did not necessitate the information exchange leading to increased cost or waste (for example, repeated diagnostics). With the focus on outcome-based models and regulatory mandates such as the 21st Century Cures Act, data sharing and interoperability are recognized as essential enablers to integrated care. Recent trends like FHIR (fast healthcare interoperability resources) can catalyze the data sharing movement, thus leading to true data democratization.
Rising focus on patient-centric care, and enhanced engagement process are major drivers contributing to the growth of the healthcare interoperability market, and the industry expects this market to grow in tune of $3-4 billion in size by 2025.
Various forms of data democratization
Data democratization can be realized in many forms in enabling transformation and innovation, not just within an enterprise but across the entire ecosystem.
Few examples of these ‘forms’ include:
Analytics-platform-as-a-service: Subscription-based solutions with end-to-end capabilities, organizing, analyzing, and presenting data that even non-IT professionals can leverage, to derive actionable insights.
Data-as-a-service: Similar to software-as-a-service, instead of providing end users with access to software, data providers make information available in the raw data format or through APIs.
Global human health record refers to EMRs (electronic medical records) of individuals complying to internationally agreed standards and are accessible globally, thanks to emerging digital technologies such as blockchain, and interoperability standards such as FHIR.
Health data market: Democratizing data in a marketplace where individuals’ health and wellness data (de-identified) are integrated and harmonized, while at the same time, ownership of patient-centric data is ensured.
Health data market indicates an advanced form of data democratization that benefits a broader ecosystem.
Health data marketplace (HDM) and industry trends
The HDM will serve as a single point of contact to access medical and wellness data for different stakeholders within the ecosystem such as payer, provider, pharmacy, pharmaceutical, and non-health sectors such as banking, and travel and hospitality.
Several studies and survey in the industry observe the growing trend of individuals’ willingness to share their personal health data. By providing individuals the control to decide who gets access to their personal health data and incentivizing them, more individuals can be encouraged to share their personal health data.
As an industry example, Amazon Web Services has started AWS Data Exchange, which allows customers to search, subscribe, and use third-party data from companies across multiple domains including healthcare.
Impact of HDM on the health ecosystem participants
Figure 1: A schematic view of the healthcare data market
For consumers (patients or members)
Consumers who agree to share their health data could be entitled to discounts to health insurance premiums, lab tests, medicine purchases or can avail subscriptions to premium services like wellness services, telemedicine, and the like. Additionally, by sharing their data with non-healthcare organizations, consumers can get benefits such as discounts on future hotel or ticket bookings from the travel and hospitality sector, access to premium banking and credit card services from the banking sector and complimentary health check-ups and lab tests from research institutes.
Lab tests or reports, genetic data, diagnosis, and treatment data from HDM will help providers generate valuable medical insights and identify the gaps in care, thereby allowing them to improve the care quality as well as eliminate the need of repetitive tests. Providers can work on predictive models—especially in the case of rare diseases—and allow early disease prediction and diagnosis, thus improving health outcomes.
Payers would buy details related to claims, FWA (fraud, waste, and abuse) data which will help them identify risks and reduce fraud. In addition, using the details such as the treatment history and demographics, payers can create customized coverage plans (for individuals or groups of certain conditions, region, and the like), thus enabling better engagement with members, and improving operational efficiency.
Data related to genomic sequencing, medical sensors, patient behaviour, and so on will help in analyzing drug effectiveness, assessing market demand, and developing new drugs. Furthermore, it will help monitor the drug demand and supply within a region, leading to improvement in supply chain and operational efficiency.
Impact on other sectors
Data related to personal wellness, diagnosis, and allied details will help organizations from the travel and hospitality sector to identify risks and put in place specific quarantine measures, if needed. Similarly, companies in the banking, technology, retail, and other space can use this data to ensure workplace safety, for example, organizing periodic health check-ups for specific conditions or bringing in process changes (if necessary) to prevent health problems from occurring. It will also enable research institutes and accelerators to analyze treatment effectiveness, identify loopholes within the existing treatment methodologies, and thus improve health outcomes in the long run.
The way forward
An interoperable data market and an advanced form of data democratization can help revolutionize the current healthcare model and improve the effectiveness and efficiency of medical data transfer across the healthcare continuum. A single integrated platform connecting all the ecosystem participants, the HDM enables each participant to analyze and improve their patient engagement process while also providing benefits to the individuals who agree to share their data. Despite all these indicate a promising future, health data democratization needs to overcome several obstacles, including but not limited to, protection of consumer privacy, the quality of data being shared, and ease of access for technology innovators and non-health organizations.
The authors of this article would like to acknowledge the contribution of their fellow colleagues Rajaram Narasimhan and Kaasi Prasaath who brought some fresh perspectives and interesting insights to the table.