Archive for the ‘ePatient Movement’ Category

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The New Face of Health Advice could be Yours

Tuesday, January 17th, 2012

It’s 2012, and it’s well-past time to tap into an under-utilized health resource: our collective knowledge.

Visit Yelp or Tripadvisor and you can get ratings and reviews for restaurants and hotels around the world. Facebook and Twitter connect people and ideas across a broad range of subjects both mundane and critical. But who is  connecting the dots with health information? Healthcare is an incredibly decentralized system, and it’s likely to stay that way for many years to come: privacy regulations simply don’t encourage companies and businesses to share health information.

More than 50% of global citizens are living with a chronic condition, yet there is no dominant social media, no ratings website, no platform for the sharing of information that will lead to the accelerated dissemination of health knowledge. Just like with Travel and Restaurants, having access to the shared experiences of others leads to an improved understanding of available options. Importantly, in healthcare, it can lead to a higher-quality, more comprehensive discussion with your healthcare provider – and could lead to a higher quality of life, more quickly than with traditional resources.

I love Yelp’s restaurant reviews. I’ve never traveled without consulting the hotel ratings at Tripadvisor. But a social platform that enables the sharing of health knowledge and experiences could lead to faster learning, more informed decisions,  and a higher quality of life for millions of people around the world.

The movement has started at healthetreatment.com. Share what you know, and learn from others. Because it’s time to put social media to a world-impacting, life-changing use.

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ePatients finding organ donors through social media sites

Tuesday, January 3rd, 2012

Here at Healthetreatment, we love stories about a community coming together to help better the health and quality of life of other ePatients. One of the most intriguing trends that we’ve seen lately is on Facebook, where several people in need have successfully found organ donors.

Most recently, Damon Brown of Seattle, who suffers from renal failure, made a Facebook page entitled “Damon Kidney” that his friends and family forwarded to their entire social networks. After attracting more than 1,400 fans over five months, his wife’s long-time friend chose to donate.

“She said it wasn’t really for me, it was for my kids, because they deserve to have a dad around,” Brown told The Associated Press.

The Washington native is just one of many using social media to look for organ donations – a growing trend, according the the news source.

“We see more and more people matched up by social media. It’s an extension of the way we communicate,” April Paschke of the United Network for Organ Sharing told the AP. “Before we found the internet, people found other ways: through a church bulletin, word of mouth or an advertisement even.”

Facebook has been the most popular site to find donors so far, but others have also had success on Twitter and Craigslist, reports Mashable. Another Seattle man, Dan Garrett, found his donor through Facebook as well.

Have you passed along any social media pages dedicated to finding an organ donor?

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‘Patient’ is not a third-person word: Dave deBronkart speaks on patient advocacy

Monday, July 18th, 2011

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.

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Federal agency lobbying for more privacy with medical records

Friday, June 3rd, 2011

As 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.

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Healthy App-etite: Disease Management

Wednesday, April 20th, 2011

Healthetreatment is a place where patients all over the world can gather to find information and communicate with others about their conditions and experiences. You may not always be on the computer to take part in the dialogue, so you consider taking advantage of the many iPhone applications available to aid those living with medical issues. Here are a few of the top-selling apps.

Glucose Buddy – This app is for those suffering from diabetes, in which they can keep track of their glucose numbers, carbohydrate consumption, insulin doses and more. It has been features in multiple medical publications, including the American Diabetes Association’s Diabetes Forecast Magazine. (Free).

iChemoDiary – Patients undergoing chemotherapy for their cancer can keep a log of their doctor’s appointments, treatments, medications and symptoms. Your personal statistics can be translated into a graph to email straight from your iPhone and helps provide a more accurate documentation of your treatment for the doctor to see. (Free).

iHealth Log – Those who have a bevy of medications to manage their disease will benefit from this app, as it can help keep track of dosages and provide helpful information on each treatment, including a picture of the drug to help eliminate any confusion. ($1.99).

SleepTracker – For iPhone users suffering from insomnia or other sleep-related conditions. Track your sleep behavior long enough and the program will be able to identify what helps you sleep better or worse, such as drinking warm milk or keeping your room at a certain temperature. (Free).

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Rare disease sufferers are behind the rise of ‘peer-to-peer healthcare’

Tuesday, March 8th, 2011

Upon 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.

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The e-Patient movement is on the rise

Wednesday, February 9th, 2011

As 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.

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Mass. Ban of Pharmaceutical Dinners Ultimately Affects Patients

Tuesday, July 20th, 2010

The 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.

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Patients Fare Better With E-Mail Access to Physicians

Friday, July 9th, 2010

A study published Wednesday in Health Affairs reports that patients who have access to their doctors via e-mail benefit from more effective health care than those who do not.

Over 35,000 patients with diabetes and/or hypertension were involved in the study performed at Kaiser Permanente. The patients were given the option of communicating with their physician via email, and the results greatly favored the ePatient, i.e., one who is actively engaged in their health care by using technological resources. Those who utilized the secure patient-physician email system showed significant improvements in their health over ones who remained unengaged, up to 6.5 percent, to be exact.

These findings are another step forward in the health industry; with physicians becoming more accessible, they can drastically increase the quality of health care they are providing.

Every day we are coming up with better ways to communicate with each other, and Healthetreatment encourages this important dialogue because we are active advocates of the ePatient movement. Better communication means better solutions, and when you share those solutions with us, you are contributing to our cause: to help providers provide and e-patients empower their lives.

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The fPatient: Concerns Over Health Care Marketing Ethics

Tuesday, June 1st, 2010

A new kind of influence has reared its head in the ePatient community, one that exploits rather than empowers. The fPatient, or fake patient, has been stirring up controversy on a few health-focused websites, as they are powered by pharmaceutical and market research companies using your health information without your knowledge.

FPatient profiles have been popping up on various social networking sites, some plugging hospital services on Facebook or a specific medication on Twitter. They all give the impression that they are real patients like you, but in reality they are the deceptive marketing strategy behind drug companies. An fPatient can be one of two things: a person who is paid by the drug company to promote a particular brand or product, or one who scours patient message boards gathering your information for marketing companies.

PatientsLikeMe was recently in the news for a faux profile, which trolled the site gathering user information for a major media monitoring company. While PatientsLikeMe does sell user information to clients (and discloses this practice in their privacy policy), they release the statistics anonymously. The fPatient violated the policy and had access to identifiable information users shared with people they perceived as fellow patients. (It should be mentioned that while these users chose to share their information in an online forum, membership is required to view the conversations). The profile was immediately removed, but what happens when an fPatient goes undiscovered? Not only does it skew the information you receive about treatment options when an advertisement is disguised rather than disclaimed, but the intent behind it is unclear; are they using the information to develop better treatments for you or to create better marketing strategies?

The involvement of pharmaceutical companies could be positive; learning more about consumers and how they rate their medications could lead to improved treatments and personalized medicine. But the fPatient practice is unsettling, as it demoralizes the efforts of communities like Healthetreatment who truly do want to help change patients lives for the better. It interrupts the circle of trust between ePatients; how are you to distinguish between genuine patients and those who are paid to shill medications? The simple fact is that it is virtually impossible to prevent these kinds of things from happening, but thousands of patients sharing their real-life experiences at Healthetreatment will be able to drown out the fPatient voice. Join in on our conversation by taking our survey; your input is valuable in the collective effort to overpower the fPatient and empower the ePatient.

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