Crowdsourcing Cures

A heart attack can be life altering — a disease that can devastate your ability to participate in life. While many of the risk factors of cardiovascular disease are modifiable, scientists are beginning to work with individuals, like you, to look closer at other factors, such as genetics, diet, daily routines, and the environment.

In the last century, research has reached major milestones, and these advances are expected to continue through the use of precision medicine. And the best part: You can be part of that.

A new approach to medical care, precision medicine has particularly changed the way we think about cardiovascular health including which preventions and treatments work best for each individual. Precision medicine is focused on predicting and preventing disease — not just treating disease. The goal is to create better-targeted, safer and more effective treatments that maintain and improve health.

The American Heart Association/American Stroke Association’s (AHA/ASA) Institute for Precision Cardiovascular Medicine is working with individuals and researchers to elevate the power of the crowd through My Research Legacy™.

Perhaps you have heard of crowdsourcing? It’s the internet-enabled practice of enlisting large numbers of people to provide information, talent, funding or task-completion for a project. Through My Research Legacy, you can share your data with world-class researchers in order to drive next-generation heart and stroke research. Your little data can be part of the big data — the prime resource of precision medicine.

The premise is simple. Healthy people and patients with cardiovascular diseases and stroke, 21 years old or older, consent to provide new data for researchers about their lifestyle, health and genetic data. New technology makes data collection and data transfer much easier. As this data flows into the database, your personal identifying information is removed and replaced with a numeric code. Researchers analyze this information to accelerate scientific discoveries, find new treatments, and develop new ways to prevent disease.

A quarter-million participants — My Research Legacy’s aspirational goal — will keep scientists and their big-data algorithms busy for years. The pilot study is looking for individuals between the ages of 21 and 50, of any race, ethnicity or gender, who have been diagnosed with a heart attack, stroke, atrial fibrillation, aortic dissection or systolic heart failure/cardiomyopathy. The first 2,000 participants who are eligible and consent will receive a Fitbit Charge II to submit data daily.

To be clear, participation in this study is unlikely to directly or immediately improve any participant’s own health. This is about the future — about one day providing better treatment and prevention for future generations, as well as contributing to improvements that may be seen in your lifetime.

Join the movement of crowdsourcing the end of cardiovascular diseases and stroke. Learn more about participating in My Research Legacy today.

Mike Wallingford

Mike and Kimberly Wallingford

Sometimes knowledge is a double-edged sword. Micheal Wallingford of Largo, Florida, knows this well. In 2010 he had been an operating room nurse for several years when he started having shoulder pains. “As a nurse, my knowledge worked against me as I could explain away these symptoms as anything else but a heart attack,” he said. “I was just ‘tired’ or it was the ‘heat.’”

Certainly, it was hot on the August weekend he took his daughter school shopping, and the “twinge” in his shoulder, which he had had off and on since leaving the military, became so intense that he had to return home. There his wife, Kimberly, asked if had run home because he was “as white as a sheet.”

The next morning, he woke up early with chest, arm, and jaw soreness and experienced a few irregular heartbeats. He roused Kimberly and said he needed to go the hospital, Tampa General, where he worked. “We were met by my cardiologist who recognized my symptoms and immediately took me to the cath lab,” he said. There they found the problem — his left main coronary artery was in spasm and 95-percent blocked.

“Because of my age (39), I had not developed collateral circulation like people in their 40s and 50s have,” he said. “Most young patients with this condition usually die if they are not stented ASAP.” That’s what happened with Micheal, his doctors inserted a stent right then and he spent that night in cardiac ICU and a few days in a stepdown cardiac unit in his own hospital.

A few weeks after his stent, he started six weeks of cardiac rehab, 15 minutes each of treadmill, cycle and elliptical machines along with 15 minutes of free weights and weight machine workouts while being closely monitored. By the end, he was running at a maximum pace on the treadmill for 45 minutes to an hour. Today, seven years later, he is a long-distance runner with triathlons and marathons under his belt. “Running is my life,” he said. “It is how I maintain my even keel and keep my stress levels under control.”

Although Micheal’s heart attack was the result of heredity — his father and paternal grandmother had multiple heart events and surgeries, including a bypass, Micheal has made lifestyle changes to support his heart health. He has taken up a low-sodium, high-protein diet. “This is a good option for anyone my age regardless of their family history or overall physical makeup,” he said. “To keep up with the physical demands of my running regimen, I eat lots of vegetables, a little bit of red meat and a lot of chicken and fish.”

When first released from the hospital, he was on eight medications to keep his blood thin and his blood pressure and cholesterol under control. “As a result of my running, I haven’t been on blood pressure medication for about five years and only take a baby aspirin and cholesterol medication,” he said. He regularly sees his cardiologist, the same one that met him at the hospital seven years ago. “We have a good relationship and I follow his recommendations to the letter.”

He is a 12-year veteran of the American Heart Association’s annual Heart Walk, and those people recruited him to participate in My Research Legacy. “It was an awesome opportunity,” he said. “I freely gave permission to the AHA and their institute of researchers to access to my medical records and my daily activity regimens by tracking me through my Garmin Triathlon watch. This way they have access to information during my heart event, during treatment, and what I am doing following my treatment.”

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