PEP Highlight: Matt Epstein
Q: Tell us a little about yourself?
I am married with two grown children. I have had multiple careers including practicing law, serving as legal counsel to the state mental health agency, serving as Executive Director of the Center for Child and Family Health, the Institute of Forensic Science and Public Policy, and the Triangle Global Health Consortium, teaching high school, college, and law school, serving as a State Representative, and starting various businesses related to solar energy and energy conservation, real estate development, and precious metals, and working with delinquent youth, prisoners, and drug addicts. I am presently a high school math teacher and a principal in both a for profit consulting company and a not for profit service organization. I earned my degrees at Yale University, University of New Hampshire School of Law, and the Boston University Graduate Tax Program.
Q: Why did you join MyApnea.Org?
I was diagnosed with Sleep Apnea quite by accident at age 59 when I accompanied my wife to a medical appointment and struck up a casual conversation with her doctor while we were waiting for a nurse to join us. It is no overstatement to say it changed my life. Knowing how many people are undiagnosed and how ineffective treatment is for so many, I came to realize how important communication between patients, researchers, and clinicians would be to improving outcomes. I saw MyApnea.Org as an unique opportunity to learn more for myself and help others.
Q: How have you participated in MyApnea.Org?
My days are pretty full with not much free time. And the free time I do have, I like to spend with family, working out, traveling, and taking classes. If it were not for MyApnea.org, I would have little involvement with the Sleep Apnea community. Through MyApnea.org, I am able to help other patients, contribute to effective research and dissemination, and learn about latest developments by filling out surveys, rating research, contributing to forums, and reading what patients, practitioners, and researchers have to say, all in just a few minutes a day.
Q: What does patient-centered research mean to you?
I worked in a field, childhood trauma, where there was both tremendous need and great research that rarely made a difference. Researchers blamed clinicians for not keeping up with evidence based interventions and clinicians blamed researchers for developing interventions that were ineffective in the real world. Both were right. If they had invested half the energy wasted on finger pointing into working together to develop interventions that worked in practice and disseminating those findings, tens of thousands of children and their families would be much better off today. MyApnea.org brings together patients who want to inform researchers with researchers who want to learn from patients so that researchers can direct their talents towards solutions that work for people and more people can be effectively diagnosed and treated.
Q: How do you think patients may change the way research is done?
Research dollars are scarce and those that are wasted are tragic. All too often there are industry funded studies designed to promote their own products and drugs and public dollars controlled by small cliques of recognized leaders who speak mainly to themselves. Their research design is often elegant with carefully crafted protocols and sophisticated statistical analyses. Too bad they often answered the wrong questions. If those scarce resources could be directed toward the solutions sought by patients, that great work would result in drastically improved outcomes with high efficiency and enthusiastic dissemination. That is the promise of active patient involvement.
Q: What do you think are some of the biggest needs for patients with sleep apnea and how can research help those?
I have to admit that since diagnosis, as much as I dislike the CPAP, it works for me and I have made it a part of my life. Not everyone is so lucky. We need to find better ways to teach practitioners about symptoms and indicators in order to diagnose more with the condition. We need to learn more about why CPAP therapy works for some and not others and craft solutions to those problems whether they are behavioral, better training of clinicians, improved equipment, or effective alternative therapies. We need to bring down the cost of screening, diagnosis, and treatment. And finally, we have to learn if and how Sleep Apnea can be prevented. The gap between those who suffer from Sleep Apnea and those successfully treated is unacceptably large and probably some multiple of the gap for other conditions.
Q: In what ways do you think MyApnea.Org will make a difference?
MyApnea.org has and will make a difference on both the macro and micro level. Everyone who logs on or even just reviews the postings learns something. Those not yet diagnosed increase the likelihood of meaningful evaluation. Those already diagnosed learn from the experience of others how to better improve their own outcomes. Clinicians learn to do a better job identifying Sleep Apnea among their patients. Researchers learn what patients care about and how they can seek and produce meaningful answers. It also is a paradigm shift, helping to create a world where patients, clinicians, and researchers collaborate for the benefit of all with the promise that some day it will be the norm for all conditions.
