Online Program Aids Heart Patients and Their Doctors
In the late 1990s, two unrelated trends converged to create substantial stress on the doctor-patient relationship. First, productivity demands of managed care limited doctors’ ability to talk to patients about their disease, answer their questions, and discuss treatment options in detail. Second, the Internet gave patients and other consumers 24/7 access to a vast amount of medical information and advice, but little guidance about how to separate relevant good science and sound advice from irrelevant information, snake oil, and the charlatans. For example, using any of the most popular search engines, you can find more than 47 000 links related to “congestive heart failure,” 618 800 links on “heart disease,” more than 136 000 links on “cardiovascular disease,” and 45 800 links on “coronary heart disease.”
As the two trends converge, physicians spend precious time answering questions and discussing issues triggered by information gathered online, which often is misleading, irrelevant to the patient’s condition, or potentially dangerous. Recently, however, medical experts have partnered with information technology experts to shift from a one-size-fits-all model to one that’s customized. The result is a powerful online tool that helps a patient diagnosed with congestive heart failure, atrial fibrillation, hyperlipidemia and hypertension, or coronary artery disease make informed decisions and participate in their own treatment.
Called Heart Profilers, the free, Web-based interactive tool is accessed through the American Heart Association web site at http://www.americanheart.org/profilers. A patient can obtain a personalized report of scientifically accurate treatment options, a list of questions to ask at their next office visit, and key information they need to participate in their treatment. Similarly, Heart Profilers helps clinicians manage patients’ treatment on the basis of the most current research and standards of care. It’s also free to physicians. The Heart Profilers are free to all users, both patient and professional.
The Professional Heart Profiler provides the physician or physician extender access to abstracts of case-specific published studies based on how a patient presents (eg, diagnostic test, physical examination, etc). Heart Profilers lists the types of studies, citations of relevant studies summarizing the inclusion/exclusion criteria, and research findings. It also allows the physicians to see how their patients compare to study populations to evaluate risk of potential outcomes associated with different treatment options.
Telling a patient that they have had a heart attack, angina, heart failure, or atrial fibrillation can be devastating to them. These are deadly conditions. While patients hunger for information, options, and hope, they often are too upset to ask the right questions or understand that they can participate in the treatment process. Heart Profilers helps the physician offer patients easy-to-understand treatment options based on the precise disease state of each individual. The technology doesn’t replace the human touch and insights of the physician — it complements them.
The American Heart Association demonstrated the program at the March 2002 annual meeting of the American College of Cardiology, where clinicians received it well. It also has gone through extensive beta testing.
Heart Profilers is a joint effort of the American Heart Association and a Seattle-based technology company, Nexcura, Inc (http://www.nexcura.com). The American Heart Association provided physicians for the project, and Nexcura developed the Internet-based decision-support technology.
Heart Profilers is the first patient-specific, heart disease education tool on the Internet, and because of the American Heart Association’s continued involvement, the information is the most accurate and up-to-date available. New studies are reviewed and added monthly.
Security, of course, is a high priority. All patient data are kept private and are accessible only by the patient. The information is encrypted for maximum security and will not be shared with anyone else without the patient’s specific consent.
The first two Heart Profilers address congestive heart failure and coronary artery disease. The next three, on board since September 1, 2002, cover atrial fibrillation, high cholesterol, and high blood pressure.
Heart Profilers is not just another medical or health care web site. It is a powerful Web-based, interactive tool that has the potential to become an integral part of a physician’s medical practice.
This marks the beginning of a new phase of the Internet. In the early days, physicians in many cases were alarmed, annoyed, frustrated, and perhaps a little intimidated when patients first began confronting them with reams of articles pulled from the Internet. Those days are history. Technology has changed. The adoption of the Internet and number of active health medical retrievers has grown to a level that can no longer be ignored by practicing physicians. Physicians need to recognize that the Internet now is a valuable tool that they can use to enhance their care. We may even be fast approaching the day when the use of online tools such as Heart Profilers is considered standard medical practice.
Members of the editorial board for Heart Profilers:
Clyde Yancy, MD, University of Texas Southwestern Medical School, Dallas, chairman; Richard C. Becker, MD, University of Massachusetts Medical School, Worcester; Chris P. Cannon, MD, Brigham and Women’s Hospital, Boston, Mass; Mina Chung, MD, Cleveland Clinic, Cleveland, Ohio; Maria Rosa Costanzo, MD, Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Ill; Louis Cregler, MD, Davis School of Biomedical Education, The City University of New York, New York; William Curtis, MD, University of Washington, Seattle; N.A. Mark Estes III, MD, Tufts New England Medical Center, Boston, Mass; Philip Hansten, PharmD, University of Washington, Seattle; Joseph Izzo, MD, State University of New York at Buffalo; Dan James, PharmD, University of Washington School of Pharmacy, Seattle; Mariell Jessup, MD, University of Pennsylvania School of Medicine, Philadelphia; Norman Kaplan, MD, University of Texas Southwestern Medical Center, Dallas; Robert H. Knopp, MD, University of Washington, Seattle; Irving L. Kron, MD, University of Virginia, Charlottesville; Jack Kron, MD, Oregon Health Science University, Portland; Peter J. Kudenchuk, MD, University of Washington Medical Center, Seattle; Alexandra Lansky, MD, Lenox Hill Hospital, New York, NY; Wayne Levy, MD, University of Washington School of Medicine, Seattle; Patrick McCarthy, MD, Cleveland Clinic Foundation, Cleveland, Ohio; L. Kristin Newby, MD, Duke University, Durham, NC; Patrick O’Gara, MD, Brigham and Women’s Hospital, Boston, Mass; Werner Samson, MD, University of Washington School of Medicine, Seattle; Robert Superko, MD, Lawrence Berkeley Laboratory, Berkeley, Calif.
Members of the editorial board for the Heart Profilers are listed in the Appendix.