It’s something you hear surprisingly often in the medical sciences: we just don’t have enough data. That’s especially true for fields of study like systems biology and scientific wellness, two data-driven fields that have become the hallmarks of genomics pioneer Lee Hood.
Hood and other health experts gathered to give their vision of the future of health in a panel Monday evening at Town Hall Seattle as part of the Institute for Systems Biology’s annual health symposium, and data took center stage.
In addition to founding the ISB, and with it systems biology as a field of study, Hood has also become a leader in the emerging field of scientific wellness. The idea is to use a cloud of personal biometric data, including a patient’s genome and microbiome, to keep people healthy instead of just treating them when they become sick.
Hood announced he will step down as president of ISB Monday morning, although he will still remain involved with the Institute as an advisor and through his executive position at the affiliated Providence St. Joseph Health system. That partnership and Hood’s startup Arivale are both focused on scientific wellness.
“In contemporary medicine, the focus is almost entirely on disease. Ninety-eight percent of the resources go to disease rather than wellness,” Hood said during the panel. He predicts that balance will reverse in the next decade, with over 90 percent of healthcare resources going to wellness instead.
In this potential world, rich databases would help us look at patients as a network of information, instead of as separate units, Hood said. That means a cancer patient making a choice between two treatments could find out how patients with similar genomics and the same disease had fared on each treatment.
But getting that data is a sticky point. One issue the panelists raised is that there’s no organization leading the charge to collect this data in the U.S., and even the data that is being gathered isn’t being shared.
“We’ve created this environment in the biomedical sciences where it’s not okay to share data,” said Steven Kern, the deputy director of quantitative sciences at the Bill & Melinda Gates Foundation.
Kern added that this environment is beginning to change and new collaborations are beginning to form, but for the most part, academics and pharmaceutical companies resist sharing data in a collaborative way. Instead of working together to build a brick house, organizations are building their own, smaller houses side-by-side, he said.
“Once we get the data, we’d much rather invest in wellness and helping to promote wellness rather than just deal with diseases, which is really just a quick fix,” Kern said.
Another stumbling block in Hood’s vision is the willingness of individuals to share data, which the panelists said is much easier to overcome.
Hood pointed out that almost all the patients in his 2014 study that kick-started scientific wellness agreed to have data on their genome and other biometrics shared for research purposes.
“The absolute key was education, and the essence was, your data is going to be the secret to creating the medicine of the future that will transform health for your kids or grandkids,” Hood said. He also said 95 percent of people that take part in Arivale, his scientific wellness startup, have agreed to share their data.
“With all the concerns about data, there’s only one that I think is really significant, and it’s discrimination,” Hood said. “And I must say that some of the things that the Trump Administration has argued for are terrifying in that regard. Giving insurance companies or employers access to your data was one thing that was passed around.”
Hood advocated for strengthening laws that protect people from discrimination based on biomedical information, and to ensure that medical information is not shared inappropriately. That and education would help individuals feel more comfortable sharing their medical data, he said.
He was also quick to point out another shortcoming in data.
“The really key thing about data is: it isn’t knowledge,” Hood said. “Data-rich doesn’t mean information-rich in any way or form. Information comes a long time after you’ve processed the data, and we have a long way to go.”
Although Hood’s vision is far off, likely even more than the decade he proposed, the panelists agreed that it is the right direction to be moving.