With a Few Clicks, You Can Be Part of the Future of Medical Research

By simply using your computer or mobile phone, you could be part of a new wave of era in clinical research... and if you use any wearable technology or other sensors, you can likely plug those in, too, which would help even more.
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The fact you are reading this tells me a few things about you. You're obviously using the Internet, and you clicked onto this page because you are at least somewhat interested in health.

I hope you're interested enough to make a few more clicks. Because that is all it takes for you to become part of a project that aims to be the largest population health research study ever undertaken. That's right, by simply using your computer or mobile phone, you could be part of a new wave of era in clinical research... and if you use any wearable technology or other sensors, you can likely plug those in, too, which would help even more.

This potentially groundbreaking work is called the Health eHeart Study (say it fast and it sounds like "Healthy Heart" study), and the American Heart Association is working with investigators in several areas, including recruitment. Dr. Elliott Antman, the AHA president, considers it one of the most innovative he's seen in his 30-year career.

"I believe this could change how we try to prevent heart disease and stroke, as well as treat those conditions when they occur," Dr. Antman said.

As a population study rooted in 21st century tools, the Health eHeart Study is essentially a hybrid of what you read about in my last two columns. The first of those focused on landmark research projects that help scientists through collected data. Last week's column focused on the amazing advancements possible through digital technology.

I'm honored to turn the discussion over to Dr. Jeff Olgin, professor of medicine and chief of cardiology at the University of California at San Francisco, and one of the study's principal investigators.


2014-08-22-Dr.JeffOlgin.jpgA few months ago, our lab was looking for about 100 people with a particular heart disease to come into our office for a test using a novel ultrasound device (a new kind of echocardiogram).

In the old days -- all the way back in, say, 2012 -- we would've spent a lot of time and money finding people in our area who fit the profile we needed, asking if they were interested, then scheduling appointments. This time, in about 30 seconds, we identified a large group of candidates who lived within 30 miles; a few days later, all slots were filled.

What made it so much easier? Using the greatest data-collection resource ever created: the Internet.

While the information superhighway has been zooming since long before 2012, the clinical research community has been slow in harnessing its power. The tried-and-true model of rounding up study participants using research coordinators and bricks-and-mortar research centers has remained the industry standard because nobody has blazed a digital trail.

About 1.5 years ago, my colleagues Greg Marcus, Mark Pletcher and I joined the wave of people who are trying. We created the Health eHeart Study, a project that uses the Internet and other digital tools to collect health and lifestyle information from a vast array of enrollees -- really vast. Our target is 1 million enrollees, more than any research study ever, because we believe this huge amount of data will lead us to our ultimate goal of creating strategies to prevent and treat all aspects of heart disease.

That's lofty stuff. It might be easier if I break it down and explain how this will work.

It starts, of course, with people signing up. (Please note: All precautions to preserve privacy are taken. We will never sell, rent or lease information, nor will we even share any information without your permission.) Then, we'll be able to stream their data, even eventually connecting to their medical records. We'll know when a participant gets sick, and then we'll be able to go back and mine their data for clues about why they got sick. This could lead to algorithms offering answers to questions that have long vexed doctors and patients.

For instance, I can currently analyze a patient who doesn't have heart disease and surmise that they have a 10 percent chance of developing it over their life. By learning from the data, I would hopefully one day be able to determine they have a 50 percent chance of something happening in the next three weeks based on individual, pattern-based predictions.

For someone with heart disease, I can currently detect that it is progressing. By learning from the data, I would hopefully one day be able to say it's likely to progress rapidly over the next month because of specific factors.

The denser we can make our data, the more powerful we'll make our algorithms. This is the crux of what Silicon Valley engineers do. Using millions and millions of clicks, Facebook selects what goes into your news feed and Amazon predicts what products you might want to buy. Those are the kinds of advancements we want to bring to the No. 1 killer of Americans, heart disease.

Being in San Francisco, the epicenter of the technology industry, gives us a bit of a home-field advantage. It also gives us greater access to designers and developers of mobile and sensor devices, which we expect to play a vital role in the future of health care.

We hoped our study would become THE place for sensor companies to send products to be evaluated -- and we don't mean evaluated from a look and feel but rather evaluating whether it has a positive impact on peoples' health. This is already happening. We get calls every day from start-up companies wanting to work with us. It's great because it means our participants will have access to cool new stuff and we will have access to more data. (One thing I've been playing with lately is a cheap, disposable Band-Aid-sized patch with a chip in it that measures heart rate, breathing rate, stress level and sleep.)

The trick is working with companies that collect data that we deem as useful. That is, some devices collect numbers that are just fun, or merely interesting. This has created a divide in the market -- products that are appealing to consumers vs. those that might actually make patients healthier.

As we grow our pool of participants and improve our digital arsenal, we hope to create an infrastructure where we can test new paradigms for care delivery. For instance, we'd like to manage 100,000 people who have high blood pressure. For people who are well-controlled, this might mean alerting them it's time for refills. For people who are poorly controlled, we'd make sure they routinely see their doctors. Most of all, we'd manage their levels of control with a mash up of data (some of which would trigger alerts) and an army of nurse practitioners.

How much we can do all comes back to how many people we enroll and how much data we collect.

One of the great things is that enrollees can come from anywhere on the planet. All it takes is being 18 or older with an Internet connection. It takes only a few minutes to sign up and about 45 minutes to provide the initial (fairly extensive) data -- but it can be spread out over a month into shorter segments if you chose to do so -- and the ongoing participation is pretty minimal, too.

So far, we have about 9,000 participants. They come from all 50 states and about 22 countries. While this is only a blip toward our target, it's already more patients than many large studies. And, it's already paying off, as in quickly gathering those 100 people for that ultrasound test.

It's also worth noting that we've done minimal promotions -- little more than word of mouth and a bit of social media activity. We actually launched Version 1 earlier than planned. (The Wall Street Journal caught wind of what we were doing and wrote about it, so we figured we had to capitalize.) Clearly, we need this to become a movement -- as viral as the "Ice Bucket Challenge" -- and we hope our involvement with the American Heart Association will expand our reach.

Hopefully you've heard enough that your next click will be to enroll. And hopefully your next click after that will be encouraging your friends to join, too. Here's what you might want to tell them:

Heart disease is really common.
If you don't have it, one of your family members or friends does. This study needs both healthy people and people with heart disease.

Participation is really easy.
You can do it from your home or your mobile phone. It's a little time-consuming at first, but it's a breeze compared to any other research study.

Plus, this is the first study of its kind, which makes it cool to be a part of - great conversation fodder. And you might even get access to some really cool technology.


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