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How to handle health data to extract the most benefit for patients? Check the guidelines for creating a sustainable data culture outlined during the “OPEN MIC Next in Health Series” organized by DayOne – Healthcare Innovation.

Fit-for-purpose data ecosystems

“When we make a statement like ‘no data, no health’ through a system lens, we’re acknowledging the transition of data. Once used to accompany the delivery of care, now data is becoming a valuable strategic asset used to drive prediction, diagnosis, solution, discovery and access to care. “In the opening keynote, Clayton Hamilton, Regional Technical Officer, Digital Health Flagship at WHO Europe, addressed the significance of data in healthcare, stressing that “timely access to quality health data has become a key determinant of good health and well-being.”

Something that was regarded as a utility, as an artifact, is now the biggest strategic value to health.

Clayton HamiltonRegional Technical Officer, Digital Health Flagship at WHO Regional Office for Europe

The WHO expert highlighted the gap between the private sector’s rapid progress in data utilization and the public healthcare systems’ ability to adapt. National health information systems are challenged to meet the changing demands that have arisen as data has taken on this new strategic importance. The needs for data use – in terms of clinical care, quality control, patient safety, policy, design, research and development, product design and disease prediction – are not being met by the data ecosystems.

Comprehensive data flow leads to symmetry in wealth and health

According to the recently published WHO/Europe report Digital Health in the European Region: the ongoing journey to commitment and transformation1, 83% of 53 countries have at least a digital health strategy or policy to guide their development, but only 35% have policies that govern the use of health data and analytics in the health systems.

Hamilton called for a comprehensive approach to data governance and the development of a “data culture” in healthcare, emphasizing the importance of trust, data literacy and inclusivity. He advocated for novel partnerships to overcome challenges in digital transformation and create equitable, accessible health systems. He urged collective efforts to leverage data for better health and well-being, emphasizing the need for shared values and universal healthcare principles to shape the future of data and digital health systems.

“An effective data culture needs two things. First, mechanisms of trust that are established and recognized by the public and healthcare professionals to give them the necessary confidence to use and share health data. Second, greater inclusion of datasets from outside the health sector, particularly in addressing environmental, social and behavioral factors impacting a population’s health and well-being,” concluded Hamilton, warning that inequalities in access to and use of data will lead to health inequalities and reduced quality of care.

Caution, health data! Please govern with care

You cannot manage what you can’t measure, so data is critical to improvements we want to bring to healthcare. Peter Speyer, Head of Data and Analytics at Novartis Foundation, discussed the challenges of accessing and integrating vast amounts of data for global health studies. He described the project “Data 42” at Novartis, which aimed to harmonize clinical trial data, genomic and proteomic data within the company. It was a 10-year, multilayer effort to link and harmonize data, and make it accessible internally whilst focusing on data standards and governance.

Transitioning to his current role at the Novartis Foundation, Speyer discussed the mission to improve population health and the challenges in finding relevant data sources to assess factors influencing health outcomes. “Thanks to breakthrough technologies like wearable trackers, AI and cloud computing, we have huge opportunities to accelerate access and use of data significantly. But we must ensure that those who intend to use and act upon this data can do so. This involves promoting data literacy, establishing a clear and common understanding of the data’s significance, fostering a culture that values data and maintaining a focus on users and citizens to determine how best to use the data for health improvement,” concluded Speyer.

Healthcare is a “fax-machines-based” sector

“97% of all data in healthcare is unstructured, not due to the lack of technology but culture.” Ana da Motta, Head of Healthcare Public Policy EMEA at AWS (Amazon Web Services), noted that the healthcare industry needs to evolve beyond its paper-based processes.

To accelerate digital transformation, it’s essential to involve all stakeholders, including citizens, patients and healthcare professionals. It requires strengthening digital literacy at both the political and individual levels while building trust in technology, as the technology itself isn’t neutral – its implications depend on how it is used.

Digital transformation in healthcare involves letting go of traditional practices and embracing modern, efficient and secure data management. By fostering digital literacy, engaging all stakeholders and building trust in technology, the healthcare sector can progress towards better patient care, streamlined processes and improved outcomes.

“Data sharing is integral to creating value,” continued Mario Bernasconi, Chief Executive Officer at Well. The Well app serves as a Swiss citizen’s gateway to the healthcare system, an open platform offering personalized guidance based on the user’s insurance model and preferences.

Data integration can also reduce hospital administrative burdens, according to Regula Spühler, COO of heyPatient. Spühler founded her startup after experiencing healthcare paper-based bureaucracy while seeking treatment for her son. Back then, she realized that healthcare was broken because data was unavailable when and where needed. As a result, doctors don’t know much about the patients, and they don’t have time to look for the relevant information in different silos.

Health data is in every data

The integrated care system extends far beyond the realm of personal health information and encompasses a more comprehensive dataset, including information related to insurance, personal preferences and other non-clinical details. Such a holistic approach could tailor healthcare services to individual needs, thereby creating a more personalized and patient-centric healthcare experience.

However, beyond the interoperability, we must strive to make data easy to understand at first glance. This could be addressed by creating health dashboards that provide individuals with carefully organized and structured data with relevant guidelines they can use to enhance their health outcomes and overall well-being. Patients and health professionals are already overwhelmed with an influx of information and options. A simplification of the user experience involves reducing the number of apps and platforms to streamline access and ensure that data is presented in an actionable and comprehensible manner.

The discussion delved into the significance of constructing a legal framework for health data sharing. Only in an ecosystem with a solid legal framework at both national and international levels – legislation that addresses crucial issues such as data protection, governance, open system interfaces, standardized data formats and terminologies and the secondary use of data for research and development purposes – will start to flow smoothly.

Health data standards, trust and governance

Data has tremendous potential to enhance healthcare efficiency, improve patient outcomes and promote a shift from “sick care” to proactive “healthcare” with prevention in the center. The panelists agreed that a collective commitment to data integration, privacy, and interoperability could revolutionize the healthcare landscape, offering a more citizen-centric future.

The discussion outlined six critical takeaways for the integrated care system:

  • Data challenge in healthcare is much more than transforming paper into bytes – it’s about how we deliver care; 
  • Data must be shared beyond personal health records to enhance personalization. However, health data are also non-clinical data which must be embedded in the healthcare system; 
  • Data must be presented in the form of easy-to-understand dashboards for better health management and to avoid overwhelming healthcare workers and patients; 
  • We need a comprehensive legal framework that facilitates data flow while addressing data governance and security; 
  • We need open system interfaces and common standards to promote interoperability and ease of use; 
  • Trust is critical. Thus, we must prioritize transparency and give patients autonomy to access and manage their data.  
Have you missed the “OPEN MIC Next in Health Series – No data, no health: Digital transformation of health systems”? Watch the video below.