The information at our everyday disposal is growing at a breathtaking rate. From the beginning of civilization to 2003, the world accumulated 1 billion gigabytes of data. Today, we create 1 trillion gigabytes every year. These advances have transformed the way we think about knowledge, communication and countless aspects of our everyday life — and they have the potential to revolutionize the way we think about our own health.
Salon spoke with Topol over the phone about the empowered consumer, rebooting the life science industry, and the doctors of the future.
We’re so used to digitizing everything — books and movies and periodicals — everything except for our bodies. My idea is to digitize the essence of what makes us tick — our genome and our physiology — thanks to different biosensors which are largely wearable, put right on a band-aid or a wrist or on the sole of a shoe. This would be combined with imaging, the ability to image any part of the body with a high-resolution pocket ultrasound device. When you take all these things together, along with personalized electronic health records and health information systems, this gives us a really panoramic, deep view of each individual.
Well, the cellphone has been the basis of a lot of democratization. You look at the Arab Spring and the Occupy movement and it’s the mobile phones that are bringing people together, through Facebook and Twitter and sharing pictures and videos and emotions. Now the digital infrastructure supports the whole medical side of this; you could have your own data for blood pressure or glucose or mood or anything quantified, right on your phone. And then that information can be shared with your social network, or your doctor, or whoever.
So the ability to have this mini computer in your pocket, that you’re essentially surgically attached to, is such a powerful force for the use of that data.
What role will the consumers play in this revolutionary shift?
I envision the consumer being the primary driver. That’s why I actually wrote the book. I’ve written a lot of medical textbooks, and I’ve lived in the medical microcosm until recent years, but then I started realizing that this digital world is really changing everything. The medical community itself is so resistant to change. The government and the life science industry are not going to be active in promoting a radical change. But consumers can do it and they’re more truly empowered, more resourceful and bound together and powerful than ever before.
And there’s one other lesson that’s really valuable: Back in 1997, the United States approved Direct to Consumer Advertising on TV for drugs, which I think was a dreadful mistake, by the way. But what’s interesting about it was it basically fueled this “Ask your Doctor” movement: a patient-centered, consumer-centered model. It was very powerful because of course these drugs [being advertised] became extraordinarily widely used. I don’t want to promote that, but on the other hand, if consumers are partnering with doctors, like, “Here’s my genome, Doctor, what do you think of it? Here’s my blood pressure and vital signs for the last three months,” it’s not just “ask your doctor” anymore it’s tell your doctor, share with your doctor.
Why is the medical field so resistant to digitization/digital records? Other industries have done this almost a decade ago.
Well, this is the history of medicine. If you go back to 1816 when the stethoscope was invented, it took 20 years before doctors would use them. The average time it takes for a medical innovation to come into daily practice is 17 years, which is just horrible. And they had all kinds of excuses, similar to the excuses that they have today. Basically, one of the main reasons doctors wouldn’t use a stethoscope was because they said it would interfere with their interactions with patients. And they didn’t want to learn all these new heart sounds and breath sounds and that sort of thing.
There’s an unwillingness to change. For example, a lot of physicians I work with are bothered by the fact that they have to be typing at a computer, looking at a screen, rather than interacting with a patient. And I understand that; both the physician and the patient take a hit in terms of optimal communication. How do we deal with that? A lot of physicians now have scribes that do the computing of data while they never lose eye contact with the patient. The patient obviously knows very well whether they’re not being listened to or looked at. So part of it is resistance to change and part of it is losing touch with a visit with a patient.
You mention this in your book, but isn’t it dangerous to have our medical files out there, in terms of security issues?
Like everything else that’s digitized, when you digitize a human being you have the potential for hacking, privacy and security issues. And already there have been breaches of electronic medical records in major medical centers around the country. So this has to be attended to with the maximal assurance that we’ll do everything we can to preserve that security. It’s a tradeoff: Do the benefits of having the essence of each individual captured digitally override the hopefully small, negligible risk of a breach of that data?
How do American doctors compare to doctors in other countries in terms of their attitudes toward technology?
Medicine on a planetary basis, on a global basis, is very conservative and resistant to change. But there are some specific examples where there’s a real gradient or heterogeneity, a real marked difference in cultures. In the U.S. the adoption of technology can be stymied because of reimbursement issues. In other countries where there’s no fee-for-service private practice, there’s been remarkable adoption of certain technologies. A great example of that is the portable ultrasound; I haven’t used a stethoscope now in two years. I use this pocket ultrasound device so I can see everything in the heart rather than listen to the heart’s sound. In the U.S., hardly any doctors are using that because they can’t get reimbursed; they much prefer to send the patient to get a cardiogram, which is an ultrasound of the heart, or an ultrasound of the abdomen or whatever the ultrasound is. Whereas in India, Brazil, China, this is one of the hottest new technologies because it saves costs dramatically and there are no issues with respect to reimbursement.
In what ways can recent breakthroughs in our understanding of the genome – from the Human Genome Project of 2000 to today – contribute to the shift to individual-based medicine?
There are three biggies right now. The longest chapter in the whole book is on genomics. The first is pharmacogenomics. Now, in the U.S. alone, we spend $350 billion a year for prescription medicines, and so many of these drugs have known serious side effects, that can be predicted by knowing a particular genotype. And in addition, some medicines don’t work for a lot of people, and we could predict that with a very simple genotype — like Plavix, which a third of people don’t respond to but they keep taking every day, or Metformin for diabetes, which 25 percent of patients don’t respond to. Tegretol has a horrendous side-effect profile. We don’t screen for it in the U.S., but you can’t get a Tegretol prescription in Taiwan without having a genotype. So in that sense we’re way behind. I could go on, a lot more examples are in the book, but that’s No. 1 – the use of genomics today. We’re not leveraging that great new knowledge.
Second is in the field of cancer therapeutics. If you have a new diagnosis of a significant cancer today, the best way to potentially get the right therapy is to get a whole genome sequence of the tumor, and also of your native so-called germline DNA, and compare the two. By comparing the mutation in the tumor to what you’re born with in your DNA, you can see what went off the tracks (because cancer is by definition a genomic disease) and then you can fashion a therapy specifically for that individual.
The third area is the elimination of the idiopathic, which is a very fancy medical term used for “we don’t know.” There’s a lot of people walking around with debilitating serious disease, and trying to get a diagnosis for what is wrong with them and they haven’t been able to do it. The issue is, until now we didn’t have a way to sort this thing out but with whole genome sequencing, we can in many of these individuals determine the root cause, the biologic basis for their illness.
Competing manufacturers of these new technologies will be required to agree upon uniform standards; is this a feasible hope?
This is a really interesting trend to watch. Now in the networking electronic world we live in, you see some unprecedented collaboration among even competing life science industry companies. So, for example, in the case of Alzheimer’s disease, where they haven’t come up with anything to prevent or change the course of Alzheimer’s, it’s been very frustrating. Many companies have invested billions of dollars in this whole objective. But now, they are working together. So most of the large pharma companies are pooling their data to basically do an autopsy of the failed drugs to find out what went wrong. And you never would have seen that in the past – I mean that’s actually remarkable.
If everyone working on cancer that did a genome sequence of an affected individual put that data in a common place and all the companies were also involved, we could really get so far ahead in this cancer problem, which is quickly emerging as the No. 1 cause of death, overriding heart disease. But we don’t have that type of collaboration yet. We need it to cross national boundaries, and to get the academic and life science industries to converge. That would be creative destruction in high gear!
What technological innovations in medicine are you most excited about?
I think the one I’m most excited about is the embedded nano-sensor. You have to put it in the bloodstream and get it to localize, either in the finger or the wrist, someplace that’s hyper handy that will communicate with your cellphone. And that embedded nano-sensor can be used to pick up, for example, the first cancer cell that shows up in the bloodstream, which would promote the earliest possible detection of cancer.
It also could help with the autoimmune form of diabetes, called Type 1, which usually affects kids. If we have that embedded nano-sensor constantly monitoring, and a medicine used to block the immune system when needed, this, hopefully, could lead to the end of autoimmune diabetes, which is really exciting.
And the other really far out thing is the area of heart attack prevention, again through an embedded nano-sensor. It can be used to pick up cells in an artery that’s starting to crack a week or two before a heart attack. We have some really good data to suggest that this will ultimately be possible.
How does Obamacare fit into this? How much will this cost? Where will the money come from?
Obamacare is in a different orbit. There’s nothing in the 2,000-plus page bill that gets into this kind of hyper innovative individual medicine, biosensor leveraging, genome and all these sorts of things – it doesn’t really show up. But it is a great opportunity to make medicine and healthcare more affordable. For example, it’s estimated that about a third of the $350 billion spent a year on prescriptions is a total waste. So there’s a great opportunity there, with gene-specific drugs. If we do the 20 million echocardiograms, and almost as many abdominal and fetal ultrasounds, for free with ultrasound pocket devices, there are billions of dollar we could save there. With sensors, if we could get tens of millions of people in this country to manage or prevent their diabetes that could have enormous financial implications. And it’s the same for high blood pressure: 50 percent of people with high blood pressure do not have it adequately managed, so they’re vulnerable for strokes and heart attacks. If we can manage it with a simple cellphone sensor, that would be an enormous potential to lower costs for stroke disabilities, heart attack, heart failure, all those sorts of things.
In what ways can social networking be useful for physicians?
Patients share on online health communities and each of these social networks have amassed an enormous following. Let’s say you have a particular condition like multiple sclerosis, or a form of cancer or diabetes. You go on these social networks and find peers whom you’ve never met with, but they become your guidance and connections. And they are now more trusted than doctors by a substantial proportion of participants in these online health communities. Now, on the doctor side, almost 90 percent don’t even know these online communities exist, which is in itself surprising. But, if we work together, this is another opportunity to get information out there.
On the other hand, you don’t exactly want to have your patient as your Facebook friend. But one thing that’s striking me is, just a couple weeks ago in the Wall Street Journal there was this big debate: Should doctors email with their patients? And I thought, “How could that even be a question?” It seemed like a crazy throwback to a different era. Then there was an article in the Journal of American Medical Association asking, should patients be able to access their laboratory data? You’ve gotta be kidding. How could this be a question in 2012? This is the paternalistic, Doctor Knows Best mind-set that is still carrying over to today. We’re too far away from democratization, and I’m hoping we can change that.
What does all this mean for the individual consumer? How will our actual experience of going to the doctor of the future change?
The doctor of the future, who has plasticity and has moved into the digital era, will be up on all these things. There may not be in-office visits, there may be virtual visits on Skype or Facetime, and patients could send all their data real time through their phone. I think each physician has to say [to patients], We want you to have all your data. We want you to be participatory. We need you to be fully engaged. And if you’re fully engaged, you’re the one with the most vested interest in your condition. We want you to have all the data, whether it’s your lab test, your notes, your metrics on your phone, your genomic data, your scans, whatever it is, we want you to have it because we want you to help drive this process.