This guest post is an article written by Lisa Neal Gualtieri, published in her local paper. It’s an example of widening distribution of principles and practices documented in the e-patient white paper. I’m grateful to Lisa for sharing these true stories of patients taking matters into their own hands, sometimes in collaboration with their care providers, sometimes despite them. We’ll discuss viewpoints in the comments.–e-Patient Dave
If you were a patient of Dr. Gregory House, you’d be afraid to tell him you’d researched your symptoms on the Internet. House, the lead character on the Fox TV show, would unceremoniously toss his stethoscope at you and proclaim that you are now a doctor as he nonchalantly walked out of his office.
But in the world beyond the television screen, many physicians have come to recognize the value of their patients’ use of the Internet.
And, if you are like most people, you turn to the Internet for health. Eighty-four percent of adult Internet users in the U.S. go online for medical information, according to a 2007 Harris poll. Some of them, like Diana C., believe the Internet saved their life.
The morning after Diana woke up to find a bat in her bedroom, she noticed marks on her shoulder. When they reddened and became itchy, she searched online and identified the marks as bat bites by measuring the distance between the teeth on a life size picture of a bat and comparing that to the marks on her shoulder. She learned that a bat bite can eventually become fatal if not treated within 48 hours.
After rushing to the hospital, Diana saw that the nurse washed her wounds for just 30 seconds, not the five minutes recommended. A doctor told her not to worry about the 48-hour deadline based on his knowledge of rabies in dogs. Diana realized that she knew more about bat bites than some of the professionals treating her. Only through her own vigilant efforts did she receive the care she needed.
Similarly, Jason D. turned to the Internet when his son, who would cough all night, seemed fine at his medical appointments. Jason concluded his son had asthma and requested tests from his son’s doctor that confirmed the diagnosis.
And Saul C. is indebted to the online symptom checker that advised him to seek immediate medical attention when, several days into a cold, his leg began to swell and hurt. He did, despite his fear that the doctor would chastise him for being overweight. The doctor diagnosed and hospitalized Saul with cellulitis and told him that he was lucky he didn’t wait any longer to be treated, and also told him he needed to lose weight.
The Internet is no substitute for a good diagnostician, like Saul’s or Dr. House. Even as a screening tool, the Internet is limited since doctors notice symptoms that you might not, order tests, and expertly consider an abundance of possible diagnoses. However, as Diana saw, doctors may have little experience with particular diseases, and, as Jason learned, a patient’s symptoms may not manifest themselves in the doctor’s office.
The Internet offers immediacy, an advantage at night or on the weekend. It offers anonymity, which is helpful when a symptom seems too embarrassing to discuss with your doctor. It also offers more detailed information than your doctor might have time to provide.
But the Internet also has erroneous information that can lead you to believe that pounds can literally melt away and cures exist for incurable diseases. A recent YouTube video that has been viewed thousands of times depicts a treatment that claims to reverse the effects of the Alzheimer’s disease, for which no cure currently exists. If miracle cures existed, everyone would know about them, including your doctor.
That is one of the reasons you shouldn’t use the Internet in a vacuum. Another is that looking symptoms up online can be confusing — and frightening — when you lack medical expertise, since there are seemingly endless possibilities to consider.
A Pew Internet and American Life study found that 18 percent of online health seekers were confused by the information they found and 10 percent felt frightened by the serious or graphic nature of the information, making it more concerning that only a third of people looking online talked with a doctor or other health professional about the information they found.
“Given that patients are going online, the best thing to do is engage them as partners in care,” said Dr. Bruce Auerbach, president of the Massachusetts Medical Society and a Lexington resident.
He went on to recommend that, when you use the Internet, you “use credible, reliable sites from trusted sources including medical specialty societies, state associations, and recognized organizations such as the American Heart Association and the American Diabetes Association.”
Above all, seek professional treatment immediately if a Web site recommends it or if you aren’t getting better. Talk to your doctor about what you find online, especially if you are confused or concerned. And don’t worry about a scolding à la House.
Finally, if you receive a new diagnosis from your doctor, ask for Web sites where you can learn more about your condition. Chances are, you’ll come away with excellent recommendations.
Lisa Neal Gualtieri is an Adjunct Clinical Professor at Tufts University School of Medicine, where she teaches a course on Online Consumer Health, where e-Patient Dave delivered a guest lecture on Dec. 2. Lisa’s blog on health is at http://lisagualtieri.com.
Welcome, Lisa!
All, Lisa is Adjunct Professor at Tufts University School of Medicine, leading a course for MPH students on consumer health sites. She also led a “lunch-n-learn” session for the Mass. Technology Leadership Council last March, which is where I met her. As the column above shows, Lisa “gets it” about the new world of patient-centered collaborative medicine.
I almost gagged, though, when I read the opening item about House throwing down his stethoscope. As much as I like the show (for his quirky character), that conduct wouldn’t last ten seconds in MY examining room. :) (Even if he thought it was *his* examining room.)
I also halted at the headline, because so often the idea of “internet diagnosis” leads readers to imagine that e-patients are diagnosing ourselves instead of consulting physicians. I imagine in some cases that happens, but it’s not what we’re about.
My favorite story along these lines is from my niece Katie, who used information from Wikipedia to correctly identify that she was experiencing appendicitis. (See the comments in this April post. She contacted her doctor and got to the ER.)
Seriously, the stories Lisa shared in her community newspaper are good eye-opening, empowering, consciousness-raising examples for the general public. Anyone want to syndicate it? Write to her to ask.
Lisa,
Excellent….We all need to embrace new technologies, understanding their benefits and limitations. Our work needs to continue with the advancement of “Participatory Medicine.”
Harlan R. Weinberg, MD, FCCP
Author, “Dr. Weinberg’s Guide to the Best Health Resources on the Web,” Harper Collins – 2008.
http://www.drweinbergsguide.com
The piece is great but the title was off-putting to me since it falls into physician myths about the Internet (that patients use Internet sites to diagnose on their own, and come to them with incorrect knowledge, wasting their time).
One of the chief tenets of ACOR.org (Assn of Online Cancer Resources) is that NO ONE diagnoses or offer medical opinions. What we offer to members, very effectively, is emotional support, commonsense advice, information on expert resources available, and research capabilities/sites like the NCI. If someone obtains an article from PubMed on a cancer dx, we help define key terms. This all goes toward making them a better patient, narrowing artificially created gap between physician expertise and patient knowledge.
This said, however, the health care system is truly broken and dysfunctional. However qualified a physician he or she is not in a position to speak for all aspects of the system. Therefore no physician should get on his or her high horse if a patient seeks out the Internet for diagnosis or anything else. Rather, physicians need to acquaint themselves with e-patient communities and reliable Internet sources so they can come to that common ground.
The Acquisition Of Medical Knowledge Does Not Mean Understanding Of Medical Knowledge
The Health Care Industry, particularly in the United States, needs to evolve and revolutionize for the benefit of those who utilize the services of this industry, which is the public. Among other issues that need to be rebuilt and corrected, there is the issue of patients misunderstanding their health care providers who happen to overestimate their patients’ health literacy. That seems to be in the process of being corrected in large part- that issue.
Health care has been called recently the most crowded market in cyberspace. There is a strong desire by these so many others to collect, refine and share health care and medical information they seek so often in order to gain valuable knowledge- such as with patients who have some concern or actual disease or medical condition , unfortunately. Patients desire to manage their specific health concerns in order to supplement the advice and treatment regimens provided by their health care providers. Patients do this with what essentially is a subculture of this healthcare online network avenues more are discovering and joining for their own health and desire for increased knowledge about medicine and health care, which includes health care providers as well. Presently, there may be 100 or more new and innovative sites which are called, as a group, Health 2.0- social networking sites, and began their creation well over a decade ago. Mr. Matthew Holt created the term ‘Health 2.0’, and also created: http://www.thehealthcareblog.com.
Types of Health 2.0 users and why they seek information from these internet sites include reasons such as to manage their own health and possible disease they may have, as well as make treatment decisions regarding these issues. About 150 million people are users on Health 2.0 for this reason, which means they now exceed health care providers as a primary source for them to receive medical and health care information. In addition, there are those who seek information for reasons of medical education, which again may include the public and the medical profession for other different reasons. The medical profession and its members utilize Health 2.0 to enhance their own medical practices for the benefit of their patients. All reasons for why they wish to become informed are valid and ultimately beneficial. Benefits of Health 2.0 include the potential to increase the qualities and outcomes of patients with various disease states. Also, Health 2.0 networking sites can decrease health care costs as well as reduce medical mistakes and decrease the number of doctor visits for patients. Patients are happier and healthier because of this, as they are now equipped, empowered, enabled, and engaged in their own health, thanks to health care social networking sites that now exist.
It is in fact a method of participatory health care that allows these others the ability to rapidly share, classify, and summarize individual health information. This improves health care systems and experiences that benefit the public health, overall. Yet this has concerning issues involved with this sharing of information. Opinions and recommendations from essentially strangers likely void of medical training, overall, may do more harm than good to those concerned about their health that seek such information.
How do the users of such systems perceive this new concept and paradigm with health care? Most users of these health care systems find the information they seek and locate are very useful for them. Most also seek and locate information regarding a particular disease or medical problem. The user of such sites usually visit many medical and health care sites on particular health care social network locations, and others seek such information before their next doctor visit to be knowledgeable and prepared about their own health. This is hopefully what occurs, instead of those with medical conditions attempting to doctor themselves.
For those others who utilize health care networking sites designed for patients, or community sites, they may become members on particular sites in order to communicate with other members who may have similar health or medical concerns as their own. They are allowed to quantify their own experiences by sharing and annotating their symptoms and treatments, if these things exist. So this system on such sites ultimately allows patients to possibly manage their diseases with this advice available immediately to them by others who have accessed the site another may be exploring at a certain time.
Other categories of health care social networking that are not necessarily designed specifically for patients and consumers include general interest sites, medical research sites, disease and medical condition sites specific to each ailment. There are also those sites that offer health advisory services, heath financial services, personal health records, comparative health website services, representative consumer empowered tools, as well as other health care network sites that may not fall into a specific category.
Yet all Health 2.0 sites seem to share similar themes are qualities:
– They impact noticeably on the traditional and collaborative practices historically associated with the medical profession and their relationship with their patients. These sites allow the users and providers to connect with each other in a new and exciting way.
– Personal healthcare can be provided by users connecting with health care providers in such a way.
– Partnerships can be formed to reform health care delivery, as sites with Health 2.0 promote outgoing medical education
– The participants, or users of these sites, are involved to a greater degree now that these sites exist.
Others that choose to utilize their health care needs with Health 2.0 web sites appear to be healing not only themselves, but health care delivery overall by the utilizing and sharing that occurs on such sites.
Patients are indeed a virtue, as they and others are democratizing health care with this new avenue of Socratic learning, yet should be utilized with caution by users of such systems.
This, indeed, is authentic patient power as long as the patients validate what they may read,
Daniel Abshear