Digitalisation has great potential to help improve healthcare provision and patient outcomes. This innovative transformation is being addressed both at the practical and policy level. I believe that the success of such transformation is hidden in approaching health data as a means toward a holistic solution, rather than a goal on its own.
Over the last 20 years, I have taken on a personal mission to support this transformation in a meaningful way – through stimulating public-private partnerships. At a moment, when patient monitoring with sensors was still at a “what if” phase, I realised that new care concepts cannot become reality without healthcare professionals, hospitals, patients and industry collaborating very closely i.e. an ecosystem for innovation and development.
Focusing on the ultimate purpose of health data
When looking at the health data infrastructure in European countries from a horizontal level (across organizations responsible for providing daily care services), I can see that there has been progress in setting up infrastructures. Additionally, data collection has become easier as more data is available. The structure of data has also improved through the help of internationally recognized and harmonised standards. However, the system is still fragmented despite the investments made, in particular for horizontal data sharing between health organisations (even in the same country) and among sectors, such as between the health and social sector. In the Netherlands for instance, healthcare providers often still rely on a fax.
The capitalisation of health data for patient care is not entirely clear. Most of the focus of policy makers and healthcare organisations is on infrastructure, and the actual use and purpose of digital health solutions are not sufficiently reflected. In order to improve in this area, involvement is needed from healthcare professionals and patients to voice the potential new solutions and functionalities that digitalisation can and should bring. It is my belief that through public-private partnerships, we can support these processes for professionals and patients, and identify how industry can contribute.
The European Health Data Space to the rescue?
While the draft policy framework potentially contains many valuable elements, it is key to focus on the implementation and its practical use. In order to set the right direction, input is required from those working on the ground. Healthcare professionals and patients should be included in discussions to voice their needs, the potential benefits for them, and the challenges to overcome, in order to optimise the system.
We should take into account the learnings from the discussions on the General Data Protection Regulation where the focus laid predominantly on the legal and technical aspects of the policy initiatives. Its functionality was not (sufficiently) in the spotlight. Furthermore, I have seen very successful examples from other sectors, for example the single European gateway for governmental procedures. We need to learn from such success stories, because the amount of health data will only keep increasing and its navigation will become more challenging.
The ongoing discussions on the European Health Data Space present an opportunity to connect regions, align systems and discuss functionality. Regarding the latter, the envisaged user of the framework should have a central role, with industry helping to increase the impact. My hope for the future of health data in Europe is that it is not only accessible but mostly meaningful and actionable, a real tool to change patients’ behaviours and outcomes for the better.