August 10, 2020

Personal Health Train initiative gives researchers data access FAIRly

Personal Health Train initiative gives researchers data access FAIRly

Health data is everywhere. It is managed by universities,
research centers, medical institutions and by individuals themselves. With this
valuable data located in so many disparate places, and organized differently in
each place, it can be difficult for researchers to access and make use of it.

FAIR health data gets onboard the Personal Health Train

A new initiative in the Netherlands known as the Personal Health Train (PHT) is designed to address this complicated situation by making health data safely and securely accessible from where it is (as opposed to trying to bring it all to a central location). Individual “stations” along the PHT tracks contain data that is controlled by individuals, physicians, hospitals, data repositories, etc which are able to determine exactly what is shared. But as a prerequisite, this health data must be made FAIR (Findable, Accessible, Interoperable and Reusable).

How the PHT helps researchers

The Personal Health Train was officially launched on January 30, 2020 at the Health-RI Conference’s “FAIRstival” in Utrecht. As is noted in the meeting report of the conference, “From the patient perspective, Ineke Hazelzet, patient advisor of the Personal Health Train, explained why the PHT will help her. For a research proposal she wants to know how many people become paraplegic every year. Her apparently simple question could only be answered by searching through many files in different treatment centers. Not easy to lay your hands on. The PHT would help her find solutions faster.”

But is there proof it would help? Well, as it happens, a new four-month study just published in Radiotherapy & Oncology examined the PHT’s ability to connect eight oncology institutes from five countries and reached a very positive conclusion about its efficacy: “The PHT infrastructure demonstrably overcomes patient privacy barriers to healthcare data sharing and enables fast data analyses across multiple institutes from different countries with different regulatory regimens. This infrastructure promotes global evidence-based medicine while prioritizing patient privacy,” writes the study’s authors.

Potential for pharma on the Personal Health Train

The PHT project is welcoming the involvement of research,
education, patients and providers – and, I believe, there is also a place for
pharmaceutical industry players with broad value-based healthcare purposes (e.g.
research, healthcare delivery, outcomes-based contracts).

Industry (pharma, devices, insurance) is one of the healthcare segments that will hopefully utilize the Personal Health Train. However, it’s important to note that data access policy (the A of FAIR) may limit some use cases. For instance, in the Netherlands, one can only use data for research and not for other purposes, unless consent is given.

The future of FAIRness and pharma

It’s important for pharmaceutical industry work to become an integral part of the FAIR community, getting involved with researchers, medical specialists and physicians in a joint journey on achieving FAIR data. Elsevier’s Entellect team is already exploring the concept of a FAIR server, which could be a great way of supporting the goals of the FAIR community. It will be enhanced on the clinical side thru Veridata HDM, a secure yet flexible data sharing environment that can be connected with the PHT. Its unique ability to containerize analytics tools and bring them directly to the data opens new possibilities for analysis. Researchers can use their preferred tools without sacrificing security or trial integrity.

Initiatives like the Personal Health Train, GoFAIR and the rise of data governance and stewardship in general are opening up many vacancies in universities, consortia and national projects teams – yet only a few pharmaceutical organizations are recruiting these roles in R&D informatics groups. It seems as if there is still a kind of missing link between healthcare (e.g. general hospital, government, research) and pharma.

So, the question is why are these two worlds still siloed,
and when will they finally start to converge? I am not yet sure of the answer,
but I do think those of us in the pharma ecosphere need to keep pushing to
ensure the industry fully embraces FAIRness and finds secure ways to connect
with clinical information. 

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