Delivering Patient-Centric Care with Open Health Data

Photo by National Cancer Institute on Unsplash

According to the Accenture Digital Health Technology Vision 2021 report, 81% of healthcare executives say the pace of digital transformation for their organization is accelerating. 93% add they are innovating with a sense of urgency. To achieve this digitalization, healthcare organizations are constantly looking for new trends they can adopt. A key trend is implementing open data-driven decision-making strategies that improve the quality of the patient experience and deliver better care at a lower cost. However, technical and practical challenges due to organizational and regulatory limitations often delay the implementation of a comprehensive open data strategy.

How Much is Patients’ Data Worth in the Healthcare Ecosystem?

The modern healthcare ecosystem consists of several stakeholders, including providers (i.e., hospitals, care centers, nursing homes etc.), payers (i.e., insurance companies, and in some countries, the government act as the primary payer), independent software vendors, the government, and patients. Each stakeholder has a role to play in this ecosystem. All of them are constantly making decisions to achieve their objectives while remaining competitive in the healthcare market.

The patient is the heart of this ecosystem due to the strategies and digitalization in the past few years. Hence, improving the secure patient experience has become the top priority for other stakeholders in this patient-centric ecosystem. This is illustrated by Figure 1 below.

Figure 1: Patient-Centric Healthcare Ecosystem and its objectives

The patient experience entirely relies on the quality of patient data, access to that data, and quick, reliable decision-making. For example, if a patient is admitted to the Emergency Treatment Unit (ETU), the main objectives are to receive speedy preventive care that minimizes early mortality, emerging complications, and pain relief.. To treat the patient fast, physicians should know the patient’s history, their current medical status, current medications, allergies, and insurance details. However, when precious minutes are lost trying to gather this information from different sources, verifying the data, and mapping it, mistakes may be made due to incorrect information (or a failure to find the necessary information), or be fatal to the patient, costing lives needlessly or long term quality of life.

How Much is Open Data Worth in the Healthcare Ecosystem?

Let’s look at the previous example again. When a physician has a 360-degreeview of a patient at their fingertips within seconds, critical life saving decisions and actions are enabled. In a case where a patient is in critical condition or is affected by multimorbidity, as is often the case in emergencies, this decision-making process could become a matter of life and death.

There are different data types related to patient healthcare such as demographics, clinical data, drug formulary, claims, and encounter data. Apart from patient data, several other data such as provider directories and payer data are also beneficial to stakeholders. This data can reside in data sources such as EHR/EMR systems, claim management systems, billing systems, and even medical devices. Implementing an open data strategy would enable better access to this data in these different sources and data exchange between stakeholders for improved interoperability and innovation. Additionally, clinical data can be processed into actionable alerts that are in turn sent to patients and practitioners to help save lives.

Allowing access to payer and provider data builds healthy competition among them. Open data prevents vendor locking and allows patients an opportunity to make better choices regarding their insurance companies and possible clinics/hospitals based on their requirements and budget.

What are the Challenges in an Open Health Data Strategy?

As depicted in Table 1, there are two main types of challenges, technical and practical.

Table 1: Open health data strategy challenges

None of these challenges are showstoppers as each has a solution. Implementing the necessary technical components such as source system connectors and data mappers will resolve the first two challenges (source system connectivity and data mapping). Introducing an API strategy would sort the data exposing challenge. As health data is sensitive and personalized, they must be dealt with securely. Hence, data security is critical in implementing an open health data strategy. Data security could be addressed by executing the necessary data breaching precautions, implementing necessary customer identity and access management (CIAM) components, and advanced consent management components.

Healthcare organizations may solve some open healthcare data challenges by partnering with a suitable technology vendor to fill the gap or use in-house technical knowledge and resources. Organizations can discuss with their vendor options to implement the most viable open data strategy while adhering to budget limitations.

What is the Role of a Government in an Open Health Data Strategy?

As shown by Figure 1, the government plays an influential role in the patient-centric ecosystem. Ideally, they would aspire to provide better patient care and improve interoperability by enforcing legislation. Hence, this legislation is not a hurdle for healthcare organizations looking to implement an open data strategy but acts as a catalyst for the digitization process. Some governments are ready to fund this strategy and actively set up policies, introduce standards and guidelines, and even support industries with technical support and best practices.

How do Governments Support Such Strategies?

A good example is the U.S government’s Interoperability and Patient Access final rule (CMS-9115-F), which was introduced by the Centers for Medicare & Medicaid Services (CMS) to provide patients with unprecedented secure access and more control over their health data. Furthermore, the ONC's Cures Act Final Rule was introduced to put the patient first, and to deliver transparency into the cost and outcomes of their care. 

Another example is the UK’s NHS Digital, which creates digital tools and data services to deliver the best care for patients by leveraging open data strategies. The Australian government also drives an open data strategy for better data and technology use to help people live healthier lives, with greater control and better access to important health information. Finally, the Indian government has its own initiative, the Ayushman Bharat Digital Mission (ABDM). Here, they seek to establish state-of-the-art digital health systems to manage core digital health data, and develop the infrastructure required for its seamless exchange.

These initiatives represent successful implementations of open health data strategies proving that better patient-centric care can be delivered with accessible, progressive, and secure health data. Hence, healthcare organizations should consider how adopting open data strategies improves their competitive position and improves their patient or member experience and outcomes through better care.

To find out how WSO2 Open Healthcare connects, translates, validates, secures, and exposes health data, click here.