Data science is booming, including in the healthcare sector. However, in order to extract insights and benefits from our health data, we first have to build a solid system for structural data processing and management. To frame the needs for healthcare data reuse in Belgium, Inovigate has united stakeholders and summarized their recommendations in two white papers.
By Liesbeth Demuyser
Belgium needs an action plan
Our medical data – often stored away in inaccessible databases or hospital record cabinets – have the power to save lives. These real-world data can not only inform doctors of their patients’ current health status, but can also be used to generate insights in disease diagnosis, progression, and treatment that help a whole population.
In order to reap the full benefits of health data, there are several steps that need to take place: firstly, we need to collect a lot of data; secondly, we need to analyze these data; and finally, turn our findings into concrete recommendations for healthcare professionals.
Where several of Belgium’s neighbors are already putting these steps into practice, our country is not yet ready to use real-world data to enhance healthcare. We still need concrete solutions for the many tricky problems data reuse presents, such as data uniformization, security, and patient privacy. Above all, we need a legal framework in which to operate.
Read this article to find out how Belgium can claim its position at the top in real-world data.
To achieve these goals, we first have to unite stakeholders and extract a standardized set of clearcut recommendations based on their visions and opinions. Eager for progress in Belgium, Inovigate has taken on this challenge.
Inovigate unites stakeholders for solutions
Inovigate is a strategy and management consulting company for health industries. Together with the Belgian Association of Hospital Managers, Inovigate organized a seminar on the secure reuse of routine care data. A roundtable subsequently took place with stakeholders to further discuss opportunities, challenges, and potential solutions, along with a thorough analysis of both literature and the initiatives of neighboring countries. These efforts resulted in the identification of several actions deemed necessary to enable the reuse of health data in Belgium.
“We need to bring everyone together, create a plan, and make people’s roles and responsibilities clear. Once we achieve this, I am sure that we can put Belgium back on the map for real-world evidence studies, clinical trials, and healthcare!” – Ingrid Maes, Managing Director and Co-founder at Inovigate
Inovigate has presented these findings in a first report: Recommendations on a Real-World Data Strategy for Belgium. The report puts forward practical solutions for data collection, quality, analysis, and reporting. Suggestions include establishing a committee or institute to facilitate alignment and ensure that all stakeholder needs are met. This body would, for example, ensure that medical specialists and data scientists agree on a core set of datatypes to be collected during routine care. Belgium will need to create specialized data storage spaces both on the local hospital level and on a (inter)national level, as well as a common coding system to allow for easy integration and interpretation of datasets of different origins.
The report also lists recommendations for data governance, privacy, and funding. The stakeholders agree that we require a national consent model, and propose a combination of public and private funding as the most sustainable strategy. Finally, the report also specifies the responsibilities of the various stakeholders involved, from patients to clinicians, hospitals, and authorities.
Proof of concept: Project ATHENA
Leading by example can be a powerful means of encouraging appetite for change. Project ATHENA (Augmenting Therapeutic Effectiveness through Novel Analytics) is a collaborative network established to explore the use of machine learning for predictions in oncology. The pioneering project brings together stakeholders from different parts of the Belgian ecosystem, including from academia (KU Leuven and UGent), hospitals (AZ Groeninge, CHU Liège, and OLV Aalst), and industry (Janssen, Inovigate, imec, Illumina, and Robovision).
“ATHENA represents a unique proof of concept for federated real-world data management in precision medicine.” – Bart Vannieuwenhuyse, ATHENA lead and Senior Director Health Information Sciences at Janssen
Following the first report, Inovigate reached out to these various stakeholders to collect their views on the governance and sustainability of the ATHENA platform, using the project as a proof of concept for a Belgian federated privacy preserving machine learning approach. The insights were compiled in a second report: The Use of Real-World Data for Personalized Medicine.
Contributors agreed that multi-stakeholder engagement and dialogue will be key to further detailing priority actions for Belgium and building consensus to put them in practice. The report identified the ATHENA approach as very promising, particularly as it addresses issues related to the sharing of sensitive medical data. Notably, stakeholders also agreed that it is extremely important for the country to harbor talent and train professionals in the use of data science in healthcare.
With these two white papers, Inovigate aims to kick off a continued debate on how best to implement the reuse of healthcare data in Belgium. Data science has the power to improve the lives of many, but progress will only be possible if stakeholders take on their individual responsibilities and contribute to advancing the field together.
The white papers Recommendations on a Real-World Data Strategy for Belgium and The Use of Real-World Data for Personalized Medicine can be found on Inovigate.com.
