If you are reading this, you are an e-patient – one who engages in the management of their own health by self-educating online. Dave deBronkart, one of the pioneers of this movement, has overcome his battle with renal cell carcinoma (a form of kidney cancer), thanks to his own research on the condition. In this video, deBronkart will tell you about the life-saving treatment that he discovered not from his own doctor, but from an online community made up of patients just like him. Being involved in your own health care is one of the greatest things you can do for yourself and for others around the world. Take a moment and listen to his inspiring words.
Posts Tagged ‘epatient’
‘Patient’ is not a third-person word: Dave deBronkart speaks on patient advocacy
Monday, July 18th, 2011
Federal agency lobbying for more privacy with medical records
Friday, June 3rd, 2011As e-patients actively involved with your own health management, it is important to take control of your privacy as well. Have you ever thought about who has access to your medical records? According to Reuters, you may not have to be in the dark anymore, as a new rule proposed by the Department of Health and Human Services (HHS) could shine light on the visibility of your personal information.
In addition to regulations established by the Health Insurance Portability and Accountability Act, the federal agency is suggesting that patients should be able to request a list of people who have viewed their medical records, reports the news source.
“We need to protect people’s rights so that they know how their health information has been used or disclosed,” said Georgina Verdugo, director of the HHS Office for Civil Rights. “This proposed rule represents an important step in our continued efforts to promote accountability across the health care system, ensuring that providers properly safeguard private health information.”
Reuters reports that this motion was put forth as part of the Obama administration’s call for an improvement in the medical records system currently utilized in the U.S.
Rare disease sufferers are behind the rise of ‘peer-to-peer healthcare’
Tuesday, March 8th, 2011Upon hearing the news that one has a rare disease, he or she often goes to family and close friends for support. Yet considering that rare diseases are defined as afflicting less than 200,000 people, it may be difficult to find the support that they need in their own community. This is why some of the most powerful e-Patients are those suffering from uncommon conditions, according to NPR.
A new survey from the Pew Internet Project and the California Healthcare Foundation has revealed that “peer-to-peer healthcare,” in which one goes online to find others with a similar condition, is becoming more prevalent among patients with rare diseases – approximately 18 percent of the total Internet users surveyed have done this.
Twenty-three percent of those polled who suffer from hypertension, diabetes, cancer, heart or lung conditions seek help online, according to the study.
While a significant number of people benefiting from online communities have chronic diseases, they are also in the company of users who are learning more about a loved one’s condition, becoming more educated about their general health or those who have had a recent medical crisis.
Websites like Healthetreatment are an important resource for the e-Patient, as they provide a platform for users to discover more information about their health and to belong to a community where they can relate to fellow patients. Doctors and other medical professionals are indeed an invaluable source of information, however, developing relationships with others who are afflicted with the same condition is not only comforting, but it creates a mutually beneficial dialogue that could potentially help your health in the long run.
The e-Patient movement is on the rise
Wednesday, February 9th, 2011As an e-Patient, you know that the Internet is one of the greatest resources that members outside of the medical community have to discovering more about their health. It seems that this trend is gaining even more steam, as researchers have found that beyond checking e-mail, health-related web searches are one of the most popular online activities.
The study conducted by Pew Internet & American Life Project showed that approximately 80 percent of Web users in the United States actively research health topics online, which corresponds to nearly 60 percent of the country’s entire population.
With such a high amount of people taking to their computers to become active in their health education, it comes as no surprise that more than 65 percent of Internet users are in pursuit of a treatment for their condition. Americans are reaping the benefits of interconnectivity by discovering up-to-date information about how they can cope with their illnesses.
Online communities not only offer information on different treatment options, but also personal experiences that create a bond between patients suffering from the same ailments. With the significant growth of the e-Patient community, people are now, more than ever, able to take charge in the management of their health.
Mass. Ban of Pharmaceutical Dinners Ultimately Affects Patients
Tuesday, July 20th, 2010The other day I had an interesting discussion with my friend Joe, who is the general manager of a local restaurant. During a recent appointment with his primary care physician, his doctor spoke about Massachusetts’ ban of pharmaceutical dinners last year and how it has affected his quality of care.
Marketing codes in MA, which went into effect last July, ban the private functions that restaurants thrived upon and disallow pharmaceutical companies to offer free meals, gifts, entertainment and more to doctors; also, the meetings must be held in an office, hospital or training facility and not off site. These dinners hosted by drug manufacturers provided educational presentations about new treatments, information which is now more difficult to obtain.
In lieu of these dinners, drug representatives travel from hospital to hospital to educate doctors about new treatments. Joe’s doctor raised a great point: Who, especially in a busy office, has time to speak with drug reps in between patients? He certainly doesn’t, and the lack of convenient, informational dinners ultimately affects patients, as the same old treatments are prescribed over and over.
The patient-physician dialogue is becoming more equal as the ePatient movement builds steam. Massachusetts has some of the best hospitals in the world, and the strict marketing codes affecting its health care providers prove how important it really is to join the movement. Become engaged in your health by researching conditions, symptoms and treatments for a more educated, efficient conversation with your physician.
The ePatient Movement: Empowerment, Equality and Expertise
Wednesday, May 19th, 2010The Internet has changed the way most industries in this world function, from banking and music sales to education and more, and has completely revolutionized our day-to-day communications. The health care industry is not immune to these societal changes, and the last decade has paved the way for an evolving dynamic between patients and their caregivers. Through the use of community-driven online resources and support groups, these patients, known as ePatients for their net-savvy method of engagement, are becoming more empowered than ever in their efforts to understand and manage their illnesses.
EPatients are people who take initiative in researching their illnesses online, gathering knowledge and becoming educated to be an equal source of information when discussing them with their doctor. Condition-specific communities are not brand new but are becoming more prevalent on the web, with fellow sufferers offering support in the form of advice. Users share personal stories as well as tips for coping mentally or physically with their shared illness, different treatment options and everyday management ideas. In the last few years physicians have begun to realize how beneficial these online resources can be for the quality of their care.
Upon his discovery of an ePatient community, Dan Hoch, an epilepsy specialist at Massachusetts General Hospital, realized he had been limiting the information he shared with his patients about a possible complication, for fear of causing stress or anxiety. “Once I discovered that [the community's] group members discussed this topic quite openly and freely online, reviewing the scientific data in a sophisticated way, I began to share my knowledge on this topic with my clinic patients,” Hoch said. “My newfound frankness has been much appreciated.” He continued to divulge in his newfound fascination, saying ePatient communities are “not only much smarter than any single patient, but also smarter, or at least more comprehensive, than many physicians—even many medical specialists.”
Healthetreatment, launched only three months ago, has quickly become a one-stop resource for your ePatient needs, where an accumulation of your ideas and experiences cater to the new patient-caregiver dynamic. To provide helpful background information associated with a number of conditions, specific symptom and treatment pages contain insight from Healthetreatment members, in addition to user-generated statistics. People can add to our expert patient knowledge base by taking a short survey about their conditions. The information they share with our community encourages equality with caregivers and fuels the e-patient movement.