Building a Health Data Ecosystem in Switzerland

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Although Switzerland is ahead of many of its competitors in Europe on levels of healthcare innovation, one potential stumbling block is access to and use of data. The country’s decentralised healthcare system means that many data sets are siloed and heterogeneous within regions, creating issues in terms of conducting research and development into new drugs, as well as ensuring that patients in Switzerland can access them.

 

Stephan Mumenthaler, director general of scienceindustries, explains the complexity of Swiss data thusly. “Switzerland is not doing too badly in regulatory terms regarding digitalisation in the healthcare sector,” he states. “However, problems arise in the effective implementation of specific projects. On the one hand, this is due to the federal structure of Switzerland with its 26 health systems. Moreover, a lack of technical standards in electronic patient records also plays a role. The large number of actors in the healthcare system from the cantons to hospitals, doctors, pharmacies, and health insurers does not make the project any easier. In addition, an obligation to introduce such a dossier was approached too late and there is still a lot of persuading the patients to be done. All these factors pose a challenge in terms of data collection and data compatibility and means that there is a lot of work still to be done.”

 

Given the federal system in Switzerland whereby we basically have 26 healthcare systems rather than one, there are no homogenised electronic health records, many healthcare competencies lie in the cantons, and there are many silos

René P Buholzer, Interpharma

 

René P Buholzer, CEO of Interpharma, adds, “There is a pressing need for a more nationwide system on health data. Given the federal system in Switzerland whereby we basically have 26 healthcare systems rather than one, there are no homogenised electronic health records, many healthcare competencies lie in the cantons, and there are many silos.”

The decentralised nature of Swiss healthcare data stands in stark contrast to the uniform electronic health records seen elsewhere in Europe, as Mads Stoustrup of Novo Nordisk points out. “There is a great deal of decision-making power at the Cantonal level, makes gathering national data complex and challenging,” he says. “There is not one national registry which everyone can use, in contrast to my home country of Denmark or any of the Nordic countries, where there is a long tradition of having national registries. In the case of obesity, physicians need to report back to the patients’ individual health insurance companies in order for the drugs to continue to be reimbursed and each obesity centre is currently using different tools.”

A similar situation is seen in the rare disease space. Takeda’s Pierre Morneau opines, “There is no centralised system here as seen in other countries where scientific societies collect data from several hospitals. One of Switzerland’s biggest challenges today is getting the data necessary for AI and data science without a strong national database. Some initiatives to address this situation have been proposed, but Switzerland remains a fragmented country, at least in terms of data.”

 

The authorities recognise the need for a robust data infrastructure for rare disease patients

Pierre Morneau, Takeda

 

In terms of turning a page and building a stronger data ecosystem, Buholzer is cautiously optimistic that – with greater collaboration between private industry and the public health sector – it can be achieved. “We have excellent infrastructure, some of the best technical universities in Europe, and a lot of IT know-how e.g., with Google’s Europe hub, but our health system is not yet adapted to this,” he claims. “This is part of building a stronger data ecosystem within Swiss public health. We are making some progress in terms of integrating data into pricing models and in work being done at the University Hospital of Basel collecting patient data to help create a patient-centric healthcare system. These efforts would benefit hugely from a better and more connected digital infrastructure.”

Takeda’s Morneau is similarly confident that a sea change on digital is on the horizon. “The authorities recognise the need for such a robust data infrastructure for rare disease patients; every time a positive reimbursement decision is given for a drug that treats a small patient population, they want to create a registry to capture the ongoing data. This ensures that if there is a lack of mature data at the time of listing, more can be generated and the true performance and effects of the drug on the market can continue to be assessed. Takeda is actively collaborating with scientific societies and patient advocacy groups to build these kinds of big databases.”

However, Stoustrup feels that responsibility for the creation of a more well-structured system does not lie with private enterprise. “The case that we, in collaboration with the other members of Interpharma, are bringing forward is that a more holistic and comprehensive health data ecosystem would benefit both individual patients and the health system overall. We can start and facilitate the discussion, show what the value could be, and do some pilot projects but in the end, it is not something that we in the pharmaceutical industry alone can or should solve,” he proclaims.

 

We can start and facilitate the discussion, show what the value could be, and do some pilot projects but in the end, it is not something that we in the pharmaceutical industry alone can or should solve

Mads Stoustrup, Novo Nordisk

 

One potential issue is the Swiss public’s attitudes around data privacy and use, something that all stakeholders will have to work to surmount. As Takeda’s Morneau warns, “the Swiss population is very cautious about data privacy, which contributes to complexity in data collection.” Mumenthaler continues, “Although the Swiss people have been relatively pragmatic in terms of their approach to the handling of personal and healthcare data up to now, maintaining this balance is going to be a huge challenge moving forward. There is a certain ambiguity on an individual level – people will generally vote for strict data protection but then be willing to part with a lot of personal information on digital platforms if they see a potential benefit. The challenge for the industry will be to show that benefit exists in order for people to relinquish a certain level of data privacy and make the use of this data on an aggregate level possible.”

If this public scepticism is overcome, there seems to be a broad agreement elsewhere on the importance of better data collection and systems to Switzerland retaining its position at the top table of global innovation. “Industry and academics are united in the opinion that we will never be able to compete with China and the US in terms of numbers of patients, but we still have a chance if we move quickly given our quality of data and quality of physicians,” states Buholzer. “High-quality data has a lot of added value for research, the development of new drugs, and also the treatment of patients.”

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