This is part 1 of a longer interview with Prof. Ernst Hafen
- Citizens can store their medical data on a not-for-profit service called midata.coop
- The service is organized as a Swiss cooperative, owned by the members
- Patients can share their data on a case by case basis with doctors and clinical studies
- This could help reduce the time & money spent to recruit patients for clinical studies
- Patent expiration means each day of delay during development of a new medicine is million of lost dollars
- It can also lead to more predictive results from trials, since we have more genetic information and data recorded with smartphones from patients & citizens.
Ernst Hafen is a molecular geneticist and currently the Deputy head of Institute for Molecular Systems Biology at ETH Zurich. He also serves as the president of the Bio-Technopark Schlieren. Before that he served as the president of ETH Zurich from 2005 to 2006. He left this position because his ideas collided with many of the existing professors
What is midata.coop and what problem does it solve?
Ernst Hafen: Unlike fruit flies (which need to be measured and dissected to obtain biological results), humans are very willing to participate in science. They talk to their doctors about their symptoms and actively participate in clinical studies. With the advent of 23andme and genome sequencing for consumers, I became interested in this concept of “Citizen Science” and personal data. Does it make sense, however, that I gave my personal genomic data to a US Startup company?
Currently, we use services like Facebook and Google by paying with our data. They are for-profit companies that have become very valuable by selling access to our data through ad targeting.
Personal health and genomic data represents a new asset, that each of us owns. Whether you are living in Tanzania or Switzerland, we are all “genomic billionaires”.
Midata.coop empowers patients to own and control access to their data. We offer a place to securely store your health and genetic data. You hold the key to decrypt the data. Further, you decide with whom to share your data: your doctor or clinical studies.
We are organized as a Swiss non-profit cooperative, where the citizens are the owners of the organization. As this, we use the “one member, one vote” principle.
We also decided not to provide financial incentives for people to participate, because this incentivizes only a certain part of the population (read: poor people) to donate data as well as people gaming the system with fake data. Rather, any revenue we generate through citizen data gets reinvested into the platform and into new research from which society at large profits.
Who pays for access to the data and how does it help with drug discovery?
Lower cost and faster completion of clinical studies
One of the largest cost drivers and time delays in the drug discovery process is the recruitment of the right patients for a study.
Two issues make this part hard:
- Finding potential participants through an expensive and time consuming process. Usually patients are recruited not directly but large clinical centers and with the support of Clinical Research Organizations (CROs).
- Selecting the participants who fulfill so called “inclusion criteria”. These can be very specific metrics on who can be included in the trial such as “blood phenylalanine level <150μg/l”, which requires batches of expensive and long tests.
Having an independent database where new study coordinators can
- reach out to interested people directly
- have to do fewer or no tests to see if participants fit inclusion criteria
is a game changer.
Further, patents have an expiration date, at which point a pharma company loses most of its revenue for this drug. A company with a blockbuster drug and a yearly revenue of 3.65B per year is losing $10M each day it is not on the market.
Midata.coop will have access to a significant amount of patients who agree to participate in clinical research and provide access to their data for this purpose. In this way we can dramatically reduce the amount of time and effort to recruit the right patient base for the clinical studies. This will translate into higher pharma revenues down the line and demonstrates that economic value of such a platform.
As such, biotechs and pharma companies who want to recruit thousands of patients for say, a Phase III trial, will be strongly incentivized to pay for getting the right patients. Midata.coop will negotiate the prices as fiduciary for the patients, who can then decide to opt-in into the study if they wish.
More Predictive Results
In the Vioxx scandal, a subgroup of patients who took Merck’s medicine was facing critical cardiovascular problems. Many died because of heart-attacks. At the time it wasn’t possible to link the cardiovascular problems to the intake of vioxx. If citizens had been able to share their health data continuously with scientists, in a secured way like midata is building, tens of thousands of deaths could have been prevented since we could have caught these problems much earlier.
As part of GDPR, Article 20, the European Union is creating a new right to data portability for citizens “It allows for data subjects to receive the personal data that they have provided to a controller, in a structured, commonly used and machine-readable format, and to transmit those data to another data controller.”
Enhanced by this trend, midata has a chance to become the central data repository for citizens who export data from various health services they use. Then they can decide who gets access to which data on a one-by-one case.
Patients are willing to share data and do “Citizen Science”
In the roughly 10 studies midata has done, we have seen how patients are actually willing to participate and share data with us if they know can contribute to science. This is a huge untapped potential and we believe the patient reported outcomes are critical to improving our healthcare system. We want to everyone, including all of us who aren’t directly working in science, to be able to enrich their life by contributing to science.
See the book Prof. Hafen mentions here: The patient will see you now
Youbase seems to be an alternative solution from the US, where Eric Topol is involved.
End of Part 1. Stay tuned for Part 2, where we speak with Prof. Hafen about what the bottlenecks are in translating research from the university into biotechs and ultimately to patients.
Thank you Luca Naef for being a co-host and helping with writing.
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