When technology companies and the medical world collaborate, big data can lead to a wealth of solutions. But there are important agreements that need to be made to make such joint ventures a success.
The possibilities of big data in healthcare are almost endless. Big data can be applied in population management and ensure that risk groups are identified in a timely manner and treated preventively. But the development of medicines and treatments tailored to the individual is also gaining momentum as a result of the use of big data.
In order to take advantage of the opportunities offered by big data in the healthcare sector, it is often necessary to bring together various areas of expertise. Healthcare institutions often do not have the technological knowledge and financial resources to successfully apply big data. Technology companies do have the knowledge and finances. But they lack data and in-depth medical know-how. Organisations that come from very different backgrounds must therefore start working together.
Not only will they have to determine who will have the right of disposal over the data, but also whether the use of the data is to be exclusive or not. And what do you do with any copies of the data upon the termination of a collaboration? "In practice, we see that the success of a collaboration depends to a large extent on those agreements, also financially," says Van Hoewijk.
Cooperation must also include good governance because the interests of the participating parties are often quite divergent. "A hospital wants to use big data to improve care and increase patient satisfaction. A technology company primarily has a commercial objective, and therefore wants to keep control of the use of the data and the related processes - because those data and processes are worth money. For both organisations, the following principle applies: they must have a voice in the collaboration about what they consider to be the most important aspects".
In addition, there are also legal preconditions. Healthcare data is regulated by medical confidentiality and privacy legislation. Often more is possible than organisations think but the basic principle remains that patient consent is required for the use of data from his or her individual patient file. In scientific research based on historical data, it is possible to use the data - under strict conditions - without individual consent. "And from a technical point of view there is also an important issue," says ICT Counsel Louis Jonker. "In many collaborations, central data storage is done through third parties. Data may not be placed on a server in a country outside the European Economic Area (EEA) without further guarantees. We have seen this happen to non-European suppliers."
"It's understandable that these preconditions are in place," says Van Hoewijk. "The application of healthcare data takes place in a social context. A majority of the public is quite willing to share data, but is nevertheless critical". Jonker: "In addition to good data security, there is a particular need for gatekeepers who determine what may or what may not happen to the data.” The social context and the need for gatekeepers can be guaranteed in a commercial cooperation by using an independent foundation that has no shareholders or owner. Van Hoewijk: "And in the event of insolvency, the data will remain accessible to society. A guarantee that might increase public support for a partnership."