By AMERICAN HEART ASSOCIATION NEWS

crowdsource

Existing research doesn’t always reveal a clear choice for cardiovascular disease and stroke patients and their caregivers, especially for understudied groups of people.

To help, the American Heart Association and the Patient-Centered Outcomes Research Institute issued a crowdsourcing challenge in May to learn more from patients. They’ll use those results to issue a second crowdsourcing challenge to researchers and clinicians on Sept. 6 of this year.

The organizations awarded $1,000 each for the best 10 patient and caregiver submissions. The top four researchers/clinicians will receive $5,000 each for studies that incorporate comparative effectiveness research and precision medicine.

Both challenges fall under the AHA’s Institute for Precision Cardiovascular Medicine, charged with finding personalized approaches to preventing and treating heart disease and stroke. Precision medicine considers genetics, lifestyle choices and environment, often in smaller sub-populations that may not be included in larger research trials.

Simply put, comparative effectiveness research compares one treatment to another. Precision medicine techniques may help focus on how one treatment affects individuals with or without a specific genetic signature. Precision cardiovascular medicine has the potential to improve and prolong health and may ultimately reduce overall healthcare costs, according to the AHA.

Patients and caretakers participating in the first challenge reported being stressed by information overload, said Jennifer Hall, Ph.D., director of the American Heart Association Institute for Precision Cardiovascular Medicine and an associate professor in the Lillehei Heart institute at the University of Minnesota in Minneapolis. Plus, the information they find may use hard-to-understand medical terms, she said.

“It’s very different finding trust when you are stressed,” Hall said.

Patients and caregivers reported facing uncertainty in six broad categories: preventing the first occurrence of cardiovascular disease and stroke; preventing the second occurrence of cardiovascular disease and stroke; medications; implantable devices; stroke treatment; and surgery vs. stenting.

The categories will be the focus of new study designs being requested from researchers and clinicians during the second challenge. Hall explains how the challenges could help patients with medical decisions by providing trustworthy, understandable information.

The researcher can utilize patient feedback to help design studies testing one treatment to another and including precision medicine approaches like genetic sequencing or RNA sequencing, Hall said.

In the field of cardiovascular disease and stroke research, precision medicine is a new and emerging approach. However, in other fields like cancer it has been working well for the last five to 10 years, Hall said.

With breast cancer, tissue samples or biopsies can quickly determine the type of cancer and any mutations, allowing quick identification of the most appropriate treatment. This is more difficult when diagnosing heart disease, because you can’t take a heart sample from a heart failure patient, or a clogged artery from someone with atherosclerosis.

Despite the obstacles, “we’re getting there,” Hall said.

“We’re finding that precision medicine approaches can help us find more answers, can help us treat patients more effectively,” said Hall, adding that not every patient with heart failure or stroke is the same.