Article Oncologie uptodate

The invitation from Farminform

DRS. FRANK VAN WIJCK | SCIENCE JOURNALIST

Farminform has a long history as a data collective on the pharmaceutical market. The transition to collecting healthcare-related datasets was started two years ago. It decided to do this in order to be socially relevant to healthcare on a much broader basis. And that is also important for researchers in oncology, say general manager Luuk Renfurm and business innovation manager Idris Mattijssen.

Perhaps Farminform is not yet a name that rings a bell for all doctors. Given the historical background of this data collective, this is not incomprehensible. The Farminform collective was established about fifty years ago with the aim of collecting information about the pharmaceutical market in the Netherlands on a not-for-profit basis and independently of interest groups and commercial parties and sharing it among participants. They can use the information – checked, cleaned, divided into therapeutic classes and in accordance with applicable legal requirements. A large number (116) of companies and organizations in the pharmaceutical sector are affiliated with Farminform and do this. The organization has historical usage information for approximately 25,000 medicines provided to patients in the Netherlands.

“We have now reached a point where we want and can do more with that data,” says Luuk Renfurm. “Given the challenges that healthcare is currently facing – the aging population, budgetary pressure – we want to combine that data with other data sources and social use. So give it back to the field. If it is up to us, doctors will get to know us much better in the near future, because with our data we can contribute to the research they want to do to improve care for their patients. In this context, we have also established an independent review committee that examines whether the request is ethically and socially responsible when requesting data.”

Combating fragmentation
The data landscape for healthcare in the Netherlands is very fragmented, says Idris Mattjssen. “That is why, in order to fulfill this new social role that we actually want to fulfill, we have focused heavily on entering into partnerships with various parties over the past year,” she says. “We want to bring together all the pieces of the puzzle that can help doctors answer clinical questions.” Oncology is an important focus area, Renfurm adds. “Understandable when you look at the share of new oncolytics in the total expenditure on medicines,” he says.

“We see that data can play an important role in improving care, with the implication that it can also control healthcare costs. That is why it is one of the most important, if not the most important, topic on which we are focusing on our transition.” This explains why Farminform, for example, has now sought cooperation with Palga, since it is involved in the collection, protection and provision of pathology data, and with SFK, the foundation that collects and analyzes pharmaceutical data on drug use in the Netherlands. “We notice in conversations with doctors that they have an idea of their patients in their own hospital,” says Mattijssen, “but that they would also like to have insight into patients’ outpatient medications. We can then be the spider in the web to help with that.” Renfurm adds: “What appeals to doctors is that we are a data trust, so an independent party. Due to its trust position and network in healthcare, Farminform can ensure that data can be linked to each other. We still see every day that data does not end up in the right place as a basis for further improving oncological treatments.”

Cooperation
The basis for doing this, says Mattijssen, is cooperation. “The more parties we can collaborate with to facilitate doctors in answering clinical questions, the better,” she says. Renfurm: “When parties approach us with the request to link data from different sources, we estimate the feasibility as realistically as possible. We then try to obtain the data that the applicant needs in a counterclockwise or clockwise manner in order to obtain the most complete picture possible. In many cases this works, because data often does not belong to just one party.”

Mattijssen: “We are currently collecting data for two doctors who want to start a social discussion about the role of heart failure medicines in coronary artery disease.” Renfurm also mentions: “We already had a use case with the PD Group, for which we brought together data on the characterization, diagnostics and current treatments of lung cancer.”

Invitation

Nice examples, but there could be more, both think. “Certainly when it comes to the combination of data, doctors and healthcare institutions can use our services much more than is currently the case,” says Maijssen. “For example, if real-world data is or becomes available, we can map patient journeys based on input from multiple hospitals, with which practitioners can optimize therapy for the benefit of their own patients.” With this interview, Renfurm and Mattijssen would like to use the opportunity to invite doctors to find their way to their data collective, as a basis for research. “The data we have can help them gain new insights on the basis of which they can tighten their patient policy,” says Renfurm. “I would like to point out that we do not see ourselves as the party that forms opinions about those data. That is not our role. Our focus is really on improving care, which we want to facilitate by linking data. That is why – in this phase in which we are now active – we are not yet focused on contacts with health insurers. Cost control is a derivative, improving care is the essence.”

Collaboration with the Ministry of Health, Welfare and Sport is on the agenda. “VWS periodically consults us to keep in touch with what is happening in the medicines market in the Netherlands,” says Renfurm, “about shortages, for example, but also about substantive developments. Even if we notice that parties do not yet have a need for collaboration, we will at least provide information about what we have to offer and always keep the door open. By working together we can prevent duplication of work or gaps from remaining. We are for co-creation in a broad sense. That is why we think it is so important that doctors know that we exist and what we can do for them, now that we no longer remain in the background but want to highlight the social importance of our data. So feel free to contact us if you are looking for dates.”

See: De uitnodiging van Farminform – Oncologie.nu