Big data ― big concerns
It is unquestionable that big data holds the promise to discover previously undetected causes of diseases. Those insights can be applied on a personal level to increase patient outcomes but also on a population health management level. The analysis of big data is enabled by cloud technology that allows for cheaper and faster processing power and data storage capacities. But big data also causes big headaches, such as privacy and data security issues.
A panel at this year’s MEDICA conference in Dusseldorf discussed the different factors that still need to be solved around big data, particularly in the field of medical research. It became very clear that possible solutions will require the collaboration of the various healthcare stakeholders, including the patient.
One of the challenges discussed is patient consent. Patients must consent to their data being used for a specific purpose; however, it is very difficult in a research environment to name the particular purpose that the patient data will be used at the time the consent is given. Dr Stephan Schug, ZTG Zentrum für Telematik und Telemedizin GmbH, wonders whether the concept of ‘data donorship’ would be a solution around this problem.
Another ongoing issue is the quality of the data. To be able to trust the data, it needs to be of good quality and must stem from a reliable source. For this to happen, technology is just one part of the equation, but a legal framework and adequate data governance models also need to be in place.
In addition, current data anonymisation efforts are still poor. Today’s IT, especially with the help of artificial intelligence solutions, is in a good position to deanonymise personal data. For medical research to be able to use big data, more work needs to be done in the field of establishing effective anonymisation methods.
Ensuring effective interoperability with big data
Then, there remains the overarching issue of interoperability that is needed to ensure the data can be pulled together from diverse sources in the first place. And there are also ethical concerns that come along with big data: “How do we handle a situation when we discovered something we didn’t intend? How do we approach people and tell them that they have a high likelihood to die within the next five years although we do not know of which cause? People also have the right not to know,” as Ain Aaviksoo, Deputy Secretary General for E-Services and Innovation (CIIO), Ministry of Social Affairs, Republic of Estonia, points out.
However, there are promising activities to work on those issues. One of them is the European Institute for Innovation through Health Data (i~HD), a not-for-profit body registered in Belgium. Its publicly stated vision is: ”To become the European organisation of reference for guiding and catalysing the best, most efficient and trustworthy uses of health data and interoperability, for optimising health and knowledge discovery.”
To reach this goal, individuals and patients need to understand the value of their own medical data to contribute to something good on a personal and societal level. “The patient is an integral partner; technology is not just for researchers to answer questions. Think innovatively, bring patients and citizens together from the very start, in this way, you will get the needed trust level up,” Aaviksoo concluded in the discussion on big data.
HIMSS is looking forward to continuing the dialogue on big data in medicine at the upcoming HIMSS Impact event in Potsdam on the 20 to 21 November.