The COVID-19 pandemic has exposed some of the structural weaknesses and inefficiencies of health systems across Europe. This has increased public and political awareness about the need to invest more in health. The way the crisis was handled by national governments particularly fueled discussions about the digitalization of the health sector, in many cases proving that a transition to more digital health services and applications is possible when push comes to shove—at least temporarily.
Telehealth suddenly became the norm, massive amounts of data on the new disease were collected and governments rushed through plans to develop tracing apps—in some instances turning a blind eye towards privacy concerns. The pandemic, of course, did not magically remove the many barriers that so far have prevented a full digital transition to occur in the health sector. But extraordinary times called for extraordinary measures. Now that things appear to be slowly going back to a “new normal” it will be interesting to see how much of the momentum for this surge in digital health can be maintained and used to overcome persisting barriers in a structured and sustainable manner.
Trust is key when it comes to the processing of health data. The explosion in generating, sharing and applying health data to drive innovation demonstrated that the barriers are not really a matter of technology. It is predominantly the lack of a coherent, safe and trusted data sharing governance structure that is required to break down data silos to facilitate innovation at pace. The different digital health failures and successes from the COVID-19 crisis demonstrated that policies and initiatives in this space will not work unless they are embraced by the individuals that are driving both the generation and ultimate application of health data: patients.
Historically patients have not been considered as playing a central role in decision-making with and about their data. Discussions about health data are often abstract and confusing. Data can refer to a variety of different sets of information that are generated, recorded and stored as part of the patient experience. This abstractness makes it hard to convey how it actually involves and impacts patients directly. This is a missed opportunity, as it prevents long-term engagement of large patient cohorts.
But what if you would replace the word “data” with the word “experience?” What if, instead of asking patients for permission to use their data for research, we started asking them for permission to learn from their experience to help solve health problems for them and for the patients of the future? To put it more strongly: without the buy-in, trust and active engagement of the actual data owners, digital health is unlikely to ever reach the scale necessary to achieve its potential as key driver for more sustainable health systems.
With the German Presidency of the EU eager to drive forward the issue of digital health, specifically aiming to address identified roadblocks to secondary data use in the EU via the European Health Data Space, it is timely to ask the question: what is the role of patients in this process?
Although the phrase patient-centric has been quite fashionable the last few years, the role of patients in digital health is not as prominent as it should be. The health data policy space is dominated by top-down initiatives. Patients are, and have been, somewhat overlooked in the active development and roll-out of a digital transition process on EU level. Despite the General Data Protection Regulation creating a legal framework in which the individual is the most important stakeholder, there is no coherent governance structure that allows patients to bundle their voices and data to truly become an equal stakeholder when it comes to health data collection and exchange.
The recently launched Data Saves Lives initiative is raising wider patient and public awareness about health data on a European level. A welcome and much needed process that hopefully leads to a more connected and empowered patient community, but more is needed to turn patients from passive bystanders into active drivers of the digital transformation in health.
In order to move away from abstract discussions and towards concrete policy changes, EU and national policymakers should urgently start to address the governance issue of data sharing and empower patients to become equal stakeholders. Making the need for patient-centric data governance models the focus of the planned Joint Action—Towards a European Health Data Space—could be a logical next step, but only if its expected outcomes are ambitious, concrete and timely enough to make a difference.
The stakes for making this work may be higher than we think. Europe has a unique opportunity to create a patient-centric data governance model that can promote and accelerate innovation in the area of digital health. Something that is much needed at a time where internally the value of the EU is openly questioned by its citizens and member states and externally global leaders and international biotech investors increasingly seem to overlook Europe.
With a growing number of informed and engaged individuals and patient communities there are many reasons to be optimistic and excited about the coming years. Let’s just hope their efforts and experiences will reach the center of all future digital health policy discussions. How great would it be if Europe can come back stronger and have a breakthrough in digital health to be the silver lining of the COVID-19 pandemic?