Posted on Thursday, August 1st, 2019 at 7:20 PM by IK K
An update from our Patient Advocate Tjebbe Tauber who visited the Sage Assembly in Seattle together with Peter Kapitein.
‘Hope’ is the word most associated with scientists by patients and people in general. Peter and I are at the Sage Assembly in Seattle and Andy Coravos is sharing her thoughts during the first panel discussion. Her remark underlines what patients expect of science, and what we expect of this day. This years’ theme is ‘Open Science and the Role of Common Evidence’ and the speakers line up looks impressive!
After the opening address the fist speaker is Eric Schadt, a professor at Mount Sinai school of medicine & founder of Sema4 (a company that uses patient data, and turns it into advice for prevention, diagnostics and of course, scientific research). Eric shares their work and it is a great mix of forward thinking, vision & a demo of how healthcare can look in the digital age. He shows us that turning mobile phones in to diagnostic tools, leads to more contiguous measurements (instead of the snapshots we now take when a patient is in the hospital). Data scientist can use that data to predict & prevent. And that scientific research & treating patients in the clinic can use the same data. These are things that we may have heard before or seen in a power point, but he is doing it today.
During a panel discussion Peter Goodhand, founder of the global alliance for genomics and health, mentions the importance of the FAIR principles. FAIR stands for Findable, Accessible, Interoperable and Re-useable; together these principles enable scientists to use data from different sources. Good to see that these are so broadly embraced. Most of you know Inspire2L!ve is also working on a data sharing pancreas cancer initiative, based on the opportunities the FAIR principles are bringing. Then we are on the next speaker; Carolina Botero, a lawyer working in Colombia for the Karisma Foundation. They collect data of the LGBT community, and the reason many people remembered her talk as most impactful of the day is not what she does with the data, but their view on data security. She explains that sometimes she worries about a persons’ laptop being stolen because of all the sensitive information there is on. But, the people who give her the data compare this to the risk of just going outside their house (Colombia could be more accepting of their LGBT community). And she says, if we don’t use this data, how will we create an effective lobby for the LGBT community. ‘What is the risk of not using this data?’ she asks. Sounds familiar, doesn’t it? Although, in my opinion, they should upgrade their security at least a little.
Cory Doctorow takes the stage. He is a fiction writer and says he will start with a fictive story. ‘Imagine a country in which doctors start prescribing a painkiller, an opioid, approved by the regulator, and one in three people in this country end up using it.’ He is not sharing a fictive story of course, he is referring to the opioid crisis in the US. I heard about this, but did not know that the death toll of this crisis is higher than that of the Vietnam war. There are entire villages addicted to this opioid, dying of overdoses! 70.000 people just in 2017.They call these villages pill mills. He then ask us why we should trust a doctor when he / she advises the use of vaccines, but not when it comes to pain killers. A painful question. In his eyes, the problem is that big companies can focus resources for things like, a lobby. But resources of the people, the patients, are small and scattered. So, costly and specialized activities like lobbying are hard for patients. And his message for scientists is clear – be a trusted party for those who supplier you with their data. A clever and entertaining talk!
There were many more insightful moments and interesting visionary people. During drinks e.g. I met a woman who worked on an algorithm that processes twitter data to recognise discrimination. The stockmarket did not like their first report and the Twitter company’s stock dropped a billion in value upon them releasing it. And she was just at the assembly because of her husband. All in all an inspiring trip where we met great people! We are not alone in our mission to get cancer under control.
Tjebbe Tauber – Patient Advocate Inspire2Live
More info about the Sage Assembly: http://sageassembly.org/