New technologies, such as personalised medicine, require new skills which are closely linked to the concept of health literacy and open the debate for many societal, scientific and ethical questions. When it is increasingly possible to “manage” health issues, several questions arise about accountability, responsibility and skills. How can health literacy empower individuals in the context of evolving medical science and the new possibilities and uncertainties of decision making? To what extent are health systems accountable for helping citizens and patients navigate new technologies?
The workshop, I was moderating at the European Health Forum Gastein in Austria on October 3rd 2018, put spotlight on genomic (self-)testing, its promises and challenges, the bio-ethics perspective, as well as what it means for both the individual and for health systems. The session explored the role of citizens, patients and health systems in a world of personalised medicine and outlined the potential actions to support individuals’ health literacy skills in order to navigate new options in prevention and treatment. The panel consisted of:
Daniela Gunz, Director of Research Partnerships, Health Bank
Peter Novak, Head of the Department Health and Society, Austrian Public Health Institute (Gesundheit Österreich GmbH)
Katie Gallagher, Policy Advisor, EPF
Cathryn Gunter, Associate Vice President, Global Population Health, Merck
Mark Lawler, Dean of Education, Faculty of Medicine, Health and Life Sciences and Chair in Translational Cancer Genomics, Centre for Cancer Research and Cell Biology, Queen's University Belfast.
The debate focused on the new promising opportunities of personalized medicine and how they could be of benefit to most people. Furthermore, the democratization of health as an opportunity of sharing your data to help research as part of a cooperative was presented. Lastly, it was pointed how personalized medicine as been around since the Romans as an essential part of health communication.
The participants highlighted the importance of trust and access to timely, accurate help when needed. In addition, it was said that many health professionals do their utmost to fulfill treatments, however the system have many shortcomings. Others highlighted the relevance of caregivers and communities to support patients as well as online education and learning opportunities.
It was concluded that the patients should be at the centre and that it was important to meet them where they are, as the jungle of personalized medicine is very complex. Although, the discussion around health literacy and personalized medicine has been going on for quite sometime it is still an important topic to keep in mind for new generations.
Sørensen and Brand (2011) Health literacy: the essential catalyst for the responsible and effective translation of genome-based information for the benefit of population. Public Health Genomics. 2011;14(4-5):195-200. doi: 10.1159/000324241