Getting The Right Information is the title of one of the chapters in the book – and as I keep harping, “information is everything.”
It's impossible to be a proactive, emancipated participant in your healthcare without being informed, which means you need sources of reliable information about your medical condition(s).
In this day and age, the Internet is the principle “go to” resource, so, though this is based on what I say in the book (where I talk about other sources), here it is about finding information on line.
Why Is It So Hard?
One thing that makes gathering good information so difficult—for doctors as well as patients—is that things change all the time, and rapidly. Medicine is famous for “neck-snapping” U-turns. The hottest intervention or advice today is all wrong tomorrow
Maybe we expect it of the old-fashioned stuff like bloodletting, mercury, and phosphorus, all of which turned out to be positively dangerous. But now, low-fat diets and reviling saturated fats are passé - it’s low-carb and slather on the butter.
Many drugs and medical procedures have undergone a U-turn; coronary artery stenting isn’t all it was cracked up to be. Aspirin, multivitamins, antiarrhythmics, atenolol for blood pressure, possibly even statins are all more of a damp squib compared with the fanfare with which they were presented (read Ending Medical Reversal by Vinayak K. Prassad, MD, MPH and Adam S. Cifu, MD for a whole lot more about how “the best thing since sliced bread” interventions get reversed because they are implemented without adequate substantiation). Even without complete reversals, many interventions undergo modifications all the time.
The takeaway is the need for current information. Not that there's any guarantee it'll be good next month, but it's the best you can hope for. So when evaluating information, check its date (stuff tends to stay up for a long time on the Internet).
And websites come and go with amazing speed – and change their format and content.This prompts a disclaimer that the websites I talk about below may change between my writing and your reading.
Most internet users look for health information online, and 75 percent of them use what they find to make medical decisions, according to Steven Kussin, M.D. (author of Doctor, Your Patient Will See You Now). He also says only four of the top 100 medical websites meet all four criteria for accuracy outlined by the Journal of the American Medical Association (JAMA). Scary!
JAMA has further emphasized the difficulty of getting good information, noting that even authors with respectable medical credentials sometimes publish inaccurate information.
So, the big question is: How do you find reliable sites?
A significant factor in assessing objectivity is to know if the site has a particular vested interest or sponsorship. There are diabetic sites run by drug companies that sell insulin. It's likely such a site will not be so enthusiastic about non-pharmacological treatments like diet and exercise. And won’t subscribe to the idea that resorting to insulin is a bit of a failure of lifestyle changes.
Eli Lilly’s site LillyDiabetes (www.lillydiabetes.com) for example says“starting insulin is a smart step toward good health,” and “not a sign of failure.”
Other respectable sites, though not owned by any particular merchant, may still be a bit influenced. One of the most popular medical sites, WebMD, has ads for Claritin on its page about allergies, for example. It seems to me, as happens even in the most respectable medical journals, the sponsorship of advertisers may influence the editorial content of the site to some extent.
“The predatory dynamic should always be kept in mind,” warns author, cardiologist and genomics expert Eric Topol, M.D.
I have found “Dr. Google” to be my best bet in researching – just enter the symptoms or subject you want to know about and look for a credible looking site in the search results. Google Scholar is a bit more sophisticated and gives you access to a lot of original papers and learned articles. But specific websites I have also found useful for information or helping select a reliable site are:
The National Center for Complementary and Integrative Health (NCCIH) at nccih.nih.gov (which used to be known as the National Center for Complementary and Alternative Medicine – until they changed to the Integrative Health name) offers good advice for assessing health information websites. “It costs money to run a website,” it explains, but who sponsors the site is important in assessing objectivity. “You should know how the site pays for its existence. Does it sell advertising? Is it sponsored by a drug company?”
NCCIH also recommends favoring URLs that end in .gov, indicating a government-sponsored site, or .edu, denoting an educational institution. While .org used to reliably indicate a noncommercial site, that's no longer the case they say.
The Health on the Net Foundation (www.hon.ch), a Swiss-based organization “founded to encourage the dissemination of quality health information for patients and professionals and the general public,” can help you find quality medical websites. HON provides certification to sites that meet its criteria, so look for the HONcode logo. Click on it and you should be taken to the HON home site to confirm the status of the website you're interested in.
Kussin says the “hands down, thumbs up best free public domain site” is UpToDate at www.uptodate.com. It provides free basic information for patients. But for more specialized information you have to pay. Healthcare professionals might want a full subscription, but you can join temporarily while you research your particular subject. At the time of this writing, it’s $19.95 for seven days or $44.95 for 30 days.
Net Top 20 (medical.nettop20.com) ranks medical websites, which might also help. Incidentally, the top two sites on their list are WebMD (www.webmd.com) and HealthCentral (www.healthcentral.com).
Worth a specific mention is the site iTriage (www.itriagehealth.com), as it's a good tool for making a diagnosis with its easy-to-use and comprehensive symptom checker, complete with cell phone app. It also helps you find providers and learn about healthcare and procedures.
For more serious academic sites that provide highly technical information, two respected resources are:
The National Center for Biotechnology Information’s site, PubMed (www.pubmed.gov), the largest component of which is Medline (www.medlineplus.gov). It's a “freely accessible online database of biomedical journal citations and abstracts created by the U.S. National Library of Medicine.” They index “approximately 5,400 journals (see why doctors have such a hard time keeping up) published in the United States and more than 80 other countries.
The Cochrane Collaboration and the Cochrane Library (www.cochrane.org/cochrane-reviews), are part of a network of more than 28,000 people from over 100 countries reviewing all the high-quality evidence on a particular healthcare subject and then publishing their conclusions. It's a good resource for guidance on what are and are not valid treatments, tests, and interventions.
To date, Cochrane has published over 5,000 reviews to help guide doctors, policymakers, and patients. “Our work is internationally recognized as the benchmark for high quality information about the effectiveness of health care,” the site modestly proclaims. Cochrane does seem to be universally acknowledged as the definitive opinion.
The Cochrane Library also curates Central, the largest collection of randomized controlled trials in the world.
Both PubMed and the Cochrane Collaboration are high-quality academic sites. The problem is they are both so large and comprehensive that it's a challenge navigating them.
And the information, though of high quality, tends to be technical and may be hard to understand (the boffins that write this stuff have a special, stylized language, that almost seems intended to obfuscate).
As with so many sites these days, you may have to sign up, which can be a pain, and always presents a concern about what the site will do with your information. And sometimes you have to pay, as is often the case to get a full article on PubMed.
For information about medicines, try Drugs.com (www.drugs.com), the online version of the Physicians' Desk Reference at www.pdr.net and Epocrates at www.epocrates.com are good resources.
Specialized societies and organizations focused on a particular illness are often good resources, too. For example, there's the American Cancer Society at www.cancer.org or more narrowly focused groups like the National Breast Cancer Foundation at www.nationalbreastcancer.org. There's the Alzheimer’s Foundation of America at www.alzfdn.org and the National Multiple Sclerosis Society at www.nationalmssociety.org, and so on. Sites like those run by the American Heart Association at www.heart.org and the National Institute of Diabetes and Digestive and Kidney Diseases at www.niddk.nih.gov are other solid sources of information.
If you're trying to get the latest dope on research in a particular medical field, www.clinicaltrials.gov tells you about ongoing or recently completed clinical trials.
The Patient Advocate Foundation (www.patientadvocate.org) is a go-to resource for information about health insurance. It also has a lot of other information to help with many aspects of your healthcare.
There are more and more sites providing information about costs and how to get the lowest price (which must be a good thing). One of the most popular is the Healthcare Bluebook (just think of yourself as an old car) at https://healthcarebluebook.com. Or Medbid http://www.medibid.com/pages/patients/. Otherwise, again Google something like “how do I know the price of my medical procedure?”
Social Media Sites
Social media websites like Facebook, Twitter, and Google+ obviously aren't medical sites, but they can be a good resource. Deborah Kogan says Facebook saved her son's life.
Four-year-old Leo Kogan got sick with a rash, fever, and facial swelling. He was diagnosed with scarlet fever (an illness associated with strep throat) and put on amoxicillin. His progress was slow and his mother posted a picture of him with his very swollen face on Facebook, talking about how sick he still was and his persistent fever.
Within minutes she got a call from an ex-neighbor. She said her son Max had the exact same thing and was diagnosed and hospitalized with Kawasaki’s disease, a nasty autoimmune condition that attacks the liver and coronary arteries. Deborah took Leo to the hospital, and sure enough, he had Kawasaki’s and some liver damage already.
Writing on Slate.com, she gives credit to social media, with her piece - “How Facebook Saved My Son's Life.”
On many sites there are blogs, forums, message boards, wikis, video sites, and other mediums that allow people to share and compare experiences. Patients Like Me (www.patientslikeme.com) is a popular site founded by Jamie Heywood, whose brother had Amyotrophic Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease). “We have learned so much about what patients need to know. We hope to help patients share their knowledge with others,” says Heywood.
Much of what is shared is subjective thoughts and feelings. Without wishing to sound negative, you have to maintain a degree of skepticism and judge the quality of any information being shared. But there are also great opportunities for users to learn from each other (learn some of the practicalities of dealing with your problem that your doctor may not have thought about), and even to interact with trained professionals.
To sum up, it can be very difficult to get answers to specific questions. For doctors and patients. Often the best you can do is read around the subject and make your best judgment.
If you have something a little out of the ordinary, it’s quite possible you will know more about it than your doctor if you have done your research – though the doctor may have a better perspective on the significance in terms of your overall health. You may know more than your doctor about paroxysmal, orthostatic tachycardia syndrome (POTS), but your doctor may have a better idea of how significant a danger the tachycardia (“racing heart”) is to you.
On a point of diplomacy, some doctors get P.O’d by “informed patients” – especially those that come with massive numbers of computer print outs that they expect their doctor to assess. Your doctor should be willing to accept that you might know more than him or her on your particular subject, without the ego getting involved. And be willing to discuss options in an informed way – otherwise a specialist should be better informed and better able to discuss the pro’s and con’s in detail.
But doctors do have ego’s that can be bruised, so be a little tactful. And remember there’s always time pressure so don’t have unrealistic expectations about how much you can process at one office visit.
To reiterate, “information is everything.” So go surf and know about what’s ailing you.