The Intersection of Open Data, Open Access, and Data-Driven Healthcare
The healthcare sector is on a transformative journey from digital health to data-driven healthcare. Embracing open data, open access, and better data cultures has become vital for improving patient care and outcomes. The ability to leverage extensive patient data, enhance transparency, and promote collaboration in healthcare will continue to transform the industry and offer multiple benefits to all stakeholders. The future of healthcare lies in data-driven decision-making and open access to information.
In terms of a data-driven culture in healthcare organisations, embracing technology alone is insufficient when transitioning from traditional healthcare approaches. Several factors, such as data collection methods, stakeholder interests, and data management, must be considered to facilitate this transformation. Key aspects of healthcare data transformation include meeting interoperability standards such as Fast Healthcare Interoperability Resources (FHIR®), assuring data quality and availability, obtaining patient participation and consent, and prioritising security. With the help of data-driven insights, patient care, healthcare management, cost optimisation, and other operations become more transparent and manageable. Quality data, characterised by accuracy, completeness, consistency, validity, uniqueness, and timeliness, is essential for making well-informed decisions and improving patient satisfaction. The usage of FHIR and related standards are mandated by law in countries like the US, whilst also extensively used by the UK, EU, and other regions.
Open data vs open access
Patients are now increasingly willing to share their health data with healthcare providers, enabling more data-driven healthcare decisions. In this context, data quality and value are important if accurate insight is to be obtained. Open data and open access, enhance transparency and also provide benefits to other stakeholders too, apart from patients, including doctors, employers, insurance companies, pharmaceutical firms, and the government.
Open data refers to making all forms of data freely available to anyone for various purposes, with no limitations on its use and being reusable. On the other hand, open access refers to making research findings and outputs available for free access without any charges or restrictions.
Better patient outcomes can be achieved through open data and open access. The ability to expose data as APIs is vital to ensure data accessibility. API management and API marketplaces are key features of a sustainable data ecosystem. International standards such as FHIR®, along with regional implementations of the same, ensure interoperability between systems.
The line between open data and open access is critical in healthcare though. With open access, the focus is on providing the right data to the right audience, whilst keeping the same data out of the hands of bad actors; consent management plays a critical role here. Accessing, evaluating, and exchanging extensive patient data enhances care effectiveness, leading to better healthcare decisions. Open data fosters scientific collaboration, enhances research capabilities, and promotes transparency, resulting in improved patient experiences and the discovery of new treatment options that enhance overall population health.
National Marrow Donor Program® success story
Be The Match®'s story demonstrates the transformative power of open data, open access, and data-driven healthcare in connecting patients with life-saving donors, ultimately improving outcomes and offering hope to those in need. The program has transformed the landscape of bone marrow and cord blood transplants, offering hope to individuals battling leukaemia, lymphoma, and other life-threatening diseases. Despite the challenge of finding suitable donors, Be The Match® has achieved remarkable success, thanks to open data, open access, and data-driven healthcare.
Over the past three decades, Be The Match® has curated the world's largest and most diverse blood stem cell registry, operating under the National Marrow Donor Program® (NMDP). This success story is underpinned by their innovative use of technology for rapid data sharing among healthcare providers. They now utilise the WSO2 API Manager to enhance efficiency, security, and cost-effectiveness in managing their life-saving mission.
The key challenge was to connect a globally distributed network of healthcare stakeholders, ensuring real-time access to vital donor information. The urgency of finding a match emphasised the need for secure data transfer, encompassing sensitive patient and donor data from different systems. A scalable and cost-effective solution with direct vendor support was essential. NMDP had three primary objectives: to establish a modern global data exchange, ensure secure data transfers, and create a scalable integration strategy.
The end results were multi-fold, leading to significant achievements for Be The Match®:
- Increased Reach and Access: Be The Match® is now part of a global transplant network with 446 leading centres worldwide, offering access to a vast pool of donors and cord blood units. In 2022, they completed 6,714 transplants.
- Secure Data Transmission: WSO2 API Manager serves as a central platform for managing all donor and patient information, ensuring secure data transmission and sharing.
- Streamlined Operations: WSO2's integration capabilities have streamlined donor registrations and information management, including human resource-related data, in one centralised system.