I participated in the second annual forum of the Scientific Panel for Health organised by the Directorate General for Research and Innovation of the European Union in Brussels on 9 June 2017. Held before a packed room of health research experts from around the EU, the title of the conference was “Health research in a connected and participative society“. I attended in representation of EUPATI, and was requested to present EUPATI and the concept of patient education that our organisation represents as a possible good practice for the inclusion of patients (and civil society in general) in the medicines research and development process.
The conference featured a series of presentations and panel discussions that all tried to explore how the Scientific Panel for Health (SPH) can ensure that there is a comprehensive policy for health research in the form of a science-led multi-stakeholder platform, as it was also suggested in this article about the SPH in the Lancet.
Most presenters reported on good practices from the field of participatory research, while they also usually pointed to the importance of true involvement of all stakeholders – patients included. However, there were some points that were subject to discussion, even controversy, such as whether it makes sense to speak about the ownership of patient data in an evolving health care setting that is generating an exponentially increasing amount of data. Barbara Prainsack from King’s College in London and Petra Wilson, HealthConnect Belgium, argued that we should much rather talk about “data custodianship” and “data governance” in this complex process where big data are often aggregated and used commercially, while Ain Aaviksoo from the Estonian Ministry of Social Affairs explained how the government of Estonia tries to implement the concept of data ownership in the daily practice of health services.
It was clear from various presentations, such as from Miklós Szócska (Hungarian state secretary for health), or Valentin Fuster (CNIC Spain) that big data and more advanced statistical methods and analysis will be essentially important for the future development of public health. Of course, this raises the question how patients can make a meaningful contribution into these processes, while data are generated from and with them.
Additional exciting points that were discussed included some fundamental considerations around citizen science; the legitimacy of the trend that looks at patients as consumers only (however, “with a twist”); and some initial considerations around and work towards the establishment of an European Cancer Institute, and a full-fledged European Health Research Council. Otmar Wiestler emphasised that the establishment of such a Health Research Council will require strong political will support from the EU and national levels.