Conclusion VIG Talk: Sharing is the New Collaboration

Data sharing is necessary in order to conduct more research into the effectiveness and safety of medicines. Approximately 10 to 15% of medicines do not end up in the right place. From a medical-ethical perspective, this is not acceptable. That is why ‘more collaboration’ must become the norm, said Luuk Renfurm (managing director Farminform) and Ron Herings during their VIG talk on 9 June.

Technically, data sharing is not a problem,’ says Professor Ron Herings, ‘the challenge lies mainly in breaking through administrative reluctance and domain thinking. In healthcare, it is by no means self-evident that someone from another domain can say something about your domain.

During the VIG Talk on 9 June, Herings and Luuk Renfurm, managing director of Farminform, argued in favour of a clear common goal for all parties in healthcare: a single medication dossier.
From a medical-ethical perspective, more research into the effectiveness and safety of medicines is desirable,’ said both speakers. We know that some 10 to 15% of the medication is not administered correctly. That is not acceptable. That’s why more collaboration must become the norm.’

Datatrust

Luuk Renfurm opened the webinar with a plea for greater use of clinical and pharmaceutical data to improve patient treatment. This can be done by using an independent data trust, a so-called Trusted Third Party (TTP). Renfurm briefly discussed how the data exchange exactly works. A data trust links the data safely and reliably, strictly in accordance with the applicable legal and judicial frameworks. For his organisation, too, the challenge lies in the social debate and in dispelling mistrust between data parties. Due to a lack of cooperation, data collection in the Netherlands is fragmented, with major differences in quality. Farminform is currently working on several projects to prove that the use of data contributes to the appropriate use of medicines.

Infrastructure

Ron Herings, who last week pronounced his inaugural address as extraordinary professor of Pharmaco-epidemiology and Care Optimisation at the VU, speaks of a complex puzzle when it comes to data collection.
You would like to know what medication a patient has used over the years and how effective and safe it was. That’s not possible at the moment, because the information is stored in different databases. Herings mentions a number of barriers, such as purpose limitation. Data may only be used for the purpose for which it was collected. Organisational design is also a challenge. Within the PD Group, he has now built up an infrastructure that ensures that data collection and data use are well separated. For healthcare, the data can be returned in a personalised form; for research, it is anonymised.

Participation

The main problem is that too few institutions are participating. Care providers do not see the point of it, even though they desperately need the information to be able to prescribe the right medication. Only 20% of pulmonologists are participating in the Heracles project! Herings therefore makes an urgent appeal for participation. Data has a certain marketing value, which makes one reluctant to share.
But data are no good’, Herings emphasises. Parties are responsible for data, but not owners. Data must be collected and shared on the basis of this relationship of responsibility.

Action

We must take action,’ advocates Luuk Renfurm. Take small steps if necessary, but make things concrete. Including all parties and showing that medicines are part of the medical treatment.
It is crucial to better monitor the effectiveness and safety of medicines,’ agrees Herings. Stop talking about costs. Medication is an integral part of treatment. We must get to work and bring together databases for a single medication dossier. Patient organisations are crucial in this respect. They can advocate the importance of this and encourage the government to take a leading role.