One of the speakers at BioData World West – Atul Butte – is well known for advocating open science. We highly recommend watching his talk on TEDMED where he shares his vision of the science of the future, it is truly inspiring!

Photo source: Atul Butte’s archive

There is a lot of information about you on the Internet… Could you please briefly introduce yourself and mention what you think is the most important to know about you. Have you always wanted to work in IT & healthcare?

My name is Atul Butte, I am the Director of the Institute for Computational Health Sciences at UCSF and Distinguished Professor in Pediatrics. My goal is to show the world how we can take data that we are already collecting and use them to develop new diagnostics, new drugs, and for improving our healthcare system. I have been in this area of computers & medicine for more than 25 years, since I was an undergraduate.

What is your main motivator in work?

My main motivator is the potential of the data that is already available. Lots of data have already been obtained and we now need more people who know what to do with that data. We do need to do much more for patients and families, there are a lot of diseases that need new diagnostics and therapeutics… We have a lot of work to do!

At the recent #NEJMdatasummit you advocated strongly for open data in the context of clinical trials. What is your rationale for advocating for all clinical trial data to be open access? Do you see any risks in sharing patient data as open access?

Well, I was first recommending making available raw data from trials in which public money or oversight might have gone in, i.e. publicly funded or publicly regulated trials (the ones that go towards regulation of a drug, or therapeutic, or diagnostic). Those are the ones that I would recommend focusing on first… As for potential risks, I see very few risks. These are de-identified datasets, so patient-linked data are not revealed, and the privacy is kept. At the same time, patients and clinicians could better benefit from knowing what drugs are working or not working. So, there are very few risks.

How would you advise young researchers to embrace open science, what can a researcher do to help change the status quo?

I think we are already heading towards open science. There is much more availability of publications to the public. I think the best way for younger researchers to embrace open science is to use the open data. There is a lot of data out there, some of those datasets had only had a very superficial look. I think a good junior scientist could have a look at several existing datasets, put them together and come up with some novel discovery that the originators of this data might have never discovered!

Can you please share your vision of precision medicine, how will it be implemented, how will it benefit patients, and what needs to be done for it to be implemented?

Precision medicine is defined by different people in different ways. To me it is a customisation of healthcare, based on the measurements from an individual. It could be biological measurements, it could be DNA, it could be behavioural measurements. A lot of data that we can get from these individuals are already being used to provide the customised healthcare. But we can’t just settle on the individual, we need to get this kind of measurements from as much of the population as we can, as well. Then we need to learn, what medical care we have applied to the rest of the population, what works and doesn’t work. Only then we can apply it to the individual. This is really a population-based approach that is also focussing on the measurements of the individual, not just biology or DNA, but also behaviour, wearable devices, and things like that. I think there are many different ways to go. The federal approach (All of Us Research Program, formerly known as NIH Precision Medicine Initiative) is to take 1,000,000 or more volunteers, to track them for many years and see how they develop disease or if they are still healthy; this is one approach. Here in California, we are funding demonstration projects (California Initiative to Advance Precision Medicine) that is a bit more targeted. There we try to improve healthcare for patients within two to five years, a shorter term project. I believe, there are many ways to develop precision medicine.

What is your dream? What do you want to achieve in life?

I really want to improve the healthcare system, whether it is with new drugs, or new diagnostics. I think there is a lot we can do, especially in the United States. We know that our healthcare system needs improving, whether it is from a biological or financial prospective, and I want to contribute to this improvement.

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Are you part of a project that facilitates data sharing for genomics or other related research?

Are you directly or indirectly involved in the Open Science movement?

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