June 28, 2016
The Empowered Patient, Part I
BY Mary Mahoney
This three-part series we will explore a big shift in health care: the empowered patient and new models of medical care. This first part explains how changes in the health care system are gathering momentum. Part II will explain the concept of the medical home, the challenges it faces and other new models for care and payment. Part III will look at how physician practices are catching up to the digital age.
For those of us who came of age in the late 20th century, i.e. those currently in the 50-80 age bracket, we took what doctors told us as gospel. Some might have sought a second opinion before undergoing an operation. A rare few might even have changed family physicians. But the concept of becoming “co-authors of our own medical care” was unthinkable.
But there has been a sea change in the nature of the doctor-patient relationship, challenging the long-held tenet that “the doctor knows best.” Funny thing is, most people haven’t noticed.
Various groups have formed around the idea of patients’ rights and educating patients. One nonprofit group, the Empowered Patient Coalition, started after the death of the group founder’s young daughter and her experience with the hospital that treated her. The Society for Participatory Medicine is another organization “devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”
The internet, of course, has been the biggest, most pervasive force in patient self-education. But if ever there was truth to the cliché “a little knowledge is dangerous thing,” that certainly is the case with medicine. And good luck to the patient who tells his doctor, “But I saw something online about my condition that said …”
Certain changes in the health-care system just may open the door to better discussion, encouraging treatment options, informing patients about clinical trials and experimental therapies as well as sharing personal experiences with other patients.
What might this look like in the real world? Sometimes we are shuffled in and an out of our primary care physician’s office in just a few minutes. A PBS report on fee-for-service explains that such doctors get paid for each service and test rather than a salary. Most doctors don’t like this system, claiming it creates a syndrome with too many patients and not enough time or individual attention, according to an article published on June 8, 2016 in the Orlando Sentinel.
Additionally, many of us feel we give up all autonomy when we enter a hospital. CNN medical correspondent Elizabeth Cohen promoted the concept of the “empowered patient” and wrote a book about it, after her own experiences with her newborn daughter’s hospitalization. In an article in The New York TimesCohen explains what you could do: “You shouldn’t have to fight, and most of the time you don’t. But sometimes you do. I think most people have a story of something that hasn’t gone quite right. You do feel small. Especially in the hospital. It’s their world, and you’re just visiting.
“But there are things you can do, and there are people out there who can help you. There are nurses — even if it’s not your nurse, there may be another nurse in the hospital who can help you. When you have insurance problems, there are agencies out there to challenge an insurance company denial. The people in your benefits office are there to help you. There are people to go to when things aren’t working out. You just have to know how to do it and how to think through your options.”
The idea of the patient as a proactive consumer, not merely a helpless bystander, was floated way before the arrival of WebMD. It was posited early on by Tom Ferguson, physician, columnist, researcher and consumer advocate. Ferguson began writing on the subject in 1975, and by the mid-1980s was discussing online health resources for the layperson. In 1993 he organized the world’s first conference devoted to computer systems designed for medical consumers.
The site e-patients.net describes Ferguson as having coined the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. “He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them,” the site says.
These advocates are not just a bunch of do-it-yourself, anti-establishment types railing against the status quo. Many within health-care admit the system could use improvements, both practical and philosophical. Indeed, stakeholders from numerous areas – patients, hospitals, primary care practitioners and the government ─ are exploring the idea that involving patients on different levels could result in better care, cost savings and a more rewarding experience for providers.
In the next blog we will take a look at new models of care and the challenges they face.