In light of the evolving debates about the digital transformation of health and care, which foresees
new EU level activities to ensure citizens’ secure access to their health data in a cross-border
context, scale up the role of big data as part of a move towards personalised medicine, and
stimulate “patient empowerment” through person-centred care , EPHA contributed the end user
perspective at three conferences held in the Member States in 2018 to highlight the opportunities of
digital health and caution against jumping ahead too fast without first bringing on board citizens,
patients and healthcare professionals.
In May, EPHA attended the 1st International Congress of the Portuguese Association for Nutrition at
the Lisbon Congress Centre, where we were contributed a presentation entitled “The Power of
Digital Solutions for Health and Disease Management”. It presented the findings of EPHA’s 2017
paper on this topic, which offers a snapshot of EPHA members’ experience of using digital solutions
in the areas of diabetes, cardiovascular diseases, oncology, mental health, healthy and active ageing
and for facilitating access to healthcare for disadvantaged groups. In the framework of the
conference, which was attended by over 250 nutritionists and “healthy food” stakeholders, special
attention was given to mobile Health apps designed to support patients in encouraging better
nutrition and diet and prevent NCDs. In addition, the presentation offered a critical stance on the
big data revolution in relation to growing concerns about cyber-bullying and misuses of personal
health data, and the potential integration of data derived from social media into healthcare decision-
making.
In August, EPHA provided a keynote speech at the “Well-being in the Information Society”
conference at the University of Turku, Finland, presenting the same evidence and stressing the need
to scale up digital health literacy so that better health outcomes can be achieved for all, and new
technology can also bring tangible benefits to healthcare professionals who are increasingly under
pressure due to budget cuts and restructuring processes.
Finally, at the Polish eHealth Forum in Sopot in September, EPHA talked about “Health and inclusion
in the Digital Single Market”, making the point that digital health is crucial for enabling the transition
to Integrated Care and improving the sustainability of health systems. However, this needs to be
accompanied by appropriate legal and financial frameworks, a comprehensive “digital health
culture” that can only be realized if end users (healthcare professionals, patients, citizens, members
of vulnerable and isolated groups) are included in the dialogue about the design, implementation
and evaluation of digital solutions. This is necessary in order to build up the necessary trust in a
world where personal data have become the “new gold”and the possibilities of technological
process go far beyond people’s still very limited knowledge and understanding of digital health.
