By AMERICAN HEART ASSOCIATION NEWS
Few know better the challenges faced when making healthcare decision than those directly affected. That’s why, as part of new crowdsourcing research, the American Heart Association and the Patient-Centered Outcomes Research Institute are asking heart, vascular and stroke disease survivors and their caregivers for their insight.
After a heart attack or stroke, or any diagnosis of a cardiovascular disease, patients are often given many treatment options, and may have no idea which is the best for them. Choosing the right treatment may be hard, but the request for this research project is simple: Share your personal experience, including the most challenging or difficult decision faced after a diagnosis, along with the factors that influenced those decisions. The idea is that better understanding of the patient experience can help guide future research that may ultimately lead to better care tailored to the specific needs of patients.
“We are excited to work towards the goal of a better understanding of patients’ needs in health care decisions,” said Jenn Hall, chief of the AHA’s Institute for Precision Cardiovascular Medicine. “Patients and caregivers experience cardiovascular disease every day and we believe understanding these experiences and perspectives will drive new advancements.”
A select group of scientists and patient representatives with expertise in heart/vascular disease and stroke will review each submission, mining the information for concerns and challenges that seem prevalent for the population and identify gaps where more research might be needed. The 10 contributors who submit the most innovative, scientifically sound and patient-centered research ideas will receive a $1,000 award
The ultimate result of this first phase of the Crowdsourcing Research Challenge is to develop research themes. A subsequent researcher-based crowdsourcing challenge will solicit ideas for research based on the needs conveyed by cardiovascular disease patients and caregivers.
Submit stories on the challenge website through June 8. The website is compliant for patient and caregiver privacy.