Patient Data – Faster but with Respect and Trust
“Faster but with Respect and Trust“ - these were the final words from Effy Vayena at the DayOne Experts event at EMBO Basel life. The message was to encourage the healthcare and life science communities to move faster to make the large scale use of patient data a reality whilst dealing with this data with enough respect for the individual to deserve the trust the patient has in the system.
Effy Vayena, ETH Zurich; Marcel Tanner, Swiss TPH, Switzerland Torsten Schwede, University of Basel and SIB; Paul Wicks, PatientsLikeMe; Susanne Baars, Human Genome Foundation; Thomas Bachofner, Swisscom Heatlh; Frank Baiden, Institute of Public Health, Ghana
This is a good summary of the message for the approximately 200 people from both the DayOne community and Basel Life participants who came to hear presentations and a panel discussion on the topic of “Ethics of data in a world of personalized health” at Basel Life on the 12th September.
The event shared insights from a variety of stakeholders ranging from public health specialists from Ghana to Swiss bioethicists, public health experts, data specialists and EHR providers and representatives from Patientslikeme and the humangenomefoundation.
The event began with Frank Baiden and the view from Ghana and emerging countries. Given the significant medical needs, Frank highlighted the need to move forward with data collection and not to be blocked by current ethical concerns for the individual. He also showed that data privacy is only one part of the social contract. Fair and equitable access to the results of the data and technology should also be part of any discussion. The discussion returned to this social contract a number of times during the evening and it was highlighted that it can vary depending on the country and the way that different risks and benefits are valued both now and in the future.
Effy Vayena, from ETH Zurich, then had a presentation that showed the many factors that go into this balancing act between risk and benefit and the many stakeholders involved. She also highlighted some of the new stakeholders and how a focus on patient control can be a way forward.
Susanne Baars from the HumanGenomeFoundatio gave a very positive speech focusing on the potential benefits from data sharing based on widespread analysis and sharing of the human genome.
The panel discussion moderated by Thomas Brenzikofer from DayOne, highlighted some of the perspectives and challenges the panel members see. This ranged from the “Swiss” problem of 26 cantons which is actually dwarfed by the 75 silos in a traditional hospital legacy system to the nuclear level of paranoia needed by Patientslikeme to make sure they reduce the risk of harm to their patients.
Many panellists and the audience questions highlighted the need to involve the wider community in the debate as to how the social contract around data sharing should develop.
During this debate, Marcel Tanner brought up the example of Basel citizen Daniel Bernoulli’s 1760 paper on the risk/benefit balance of smallpox to show that this balance between individual risk and communal good is not something new to Basel
On behalf of the DayOne team thank you to all those who attended and especially to those who have already filled in the post-event survey. If you haven’t filled out the survey, please do so here.
The new DayOne website will soon be live.
The DayOne conference, taking place on November 15, is shaping up and you can register for it here.
Also keep an eye out for the report from the DayOne Project on blockchain taking place on October 10 – soon to be announced.
Report by Doug Haggstrom