Doctors are your first source of information about any medical problems. But unless your problem is a very simple one, they do not have enough time to tell you everything you need to know. Its up to you to learn as much as you can about your problem and its treat­ments so you can make good choices, reduce risks, and not do or eat anything that might conflict with your treatment.

The more you learn, the better your chances.

PATIENTS


Local and on-line support groups can provide in­for­mation and emo­tion­al support.

SUPPORT GROUPS 

In the United States and some other countries, sup­port groups exist to help people deal with health prob­lems. Most members have been attending meetings for a while. Some are there to learn more about their choices. Some are about to be treated. And some have continued to attend after treat­ment—even if it happened years ago. Most will be happy to answer your questions or help you maintain a positive outlook. But perhaps the most valuable thing about support groups is that they all under­stand what you are going through.

Many support group meetings begin with a lecture by a specialist or researcher. (If a hospital sponsors the group, they usually provide most of the speakers.) Afterward, members may join informal break­out groups to answer each others’ questions. A medical profes­sional should be present to make sure answers are accurate.

You may feel confused or embar­rassed the first time you attend a meeting. People may ask questions that seem very intimate. But you will feel more comfortable once you’ve listen­ed to others talk about their problems and solutions.

Members who feel the need to reassure themselves that they made the right choices, may strongly recommend that you do what they did. Listen, but think for yourself.

If a group seems disorganized or badly run, try another. Support groups are worth the effort. And continue to attend after you have been treated. That way you can get help with post-treatment problems and you can offer support to new members.

ON-LINE COMMUNITIES 

There are e–patient com­mun­ities for many diseases and condi­tions. They typically have many more members than local support groups do, and someone will probably be on-line at any time. Members research the problem and share answers with others. Some groups sponsor such things as clinical trials and tissue banks. And some com­munities are the only outside resources for people with rare diseases.

Dr. Dan Hoch, a neurologist at Mass­achusetts General Hos­pi­tal, learned about e‑patients in 1994. He observed that:

These “patient stories” often included a number of empowering elements that set them apart from the advice patients typically receive from their clinicians: role modeling by an active, critical, well-informed “expert patient,” comparative reviews and recommend­ations of clinicians and treatment facilities, and advice about how to handle the practical details of living with a chronic illness (such as how to organize a home medical record, manage treatment side effects, find the best drug prices, and deal with less-than-perfect health pro­fes­sionals and health-care provider systems, and a wide variety of other topics relating to effective medical self-man­age­ment). These extended patient narratives—no two alike—thus gave rise to an accumulated body of what my colleagues and I began to think of as an expert patient knowledge base. [ 1 ]

Dr. Hoch and his colleague Dr. John Lester concluded these groups could be “invaluable resources for clinicians and researchers.” With others at the hospital, they helped hundreds of related groups unite to form the Brain Talk Communities.

Be careful. Many sites claiming to be on-line commu­ni­ties or support groups only provide an unsuper­vised space for people to ask and answer questions—usually incom­pletely and/or inaccurately.

ON-LINE PATIENT DIARIES 

These diaries record personal stories of treatment and what came after. But helpful diaries are hard to find, and the ones on hospital websites often seem to be advertising in disguise. Search the web for patient diaries or patient stories and the disease or condition. Some are texts, some are videos.

TELEPHONE CONTACTS 

Some support groups can arrange for you to speak with patients who had similar problems. Some organ­izations or government agencies, like the National Cancer Institute, provide phone, chat, or email contact with people who can explain medical information, show you how to get assistance, and help you cope.

INTERNET


There are millions of health-inform­ation websites. Almost all are of questionable value at best, and many are just trying to sell you something. Be particularly careful with “social book­marking” sites. Although they claim to only provide links to sites, many contain copies of the document—which may include malware to infect your computer.

Another drawback to social book­marking sites is that any­one can post anything. Many links contain mislead­ing or dangerous inform­ation, and many others have nothing at all to do with the subject. Looking through 500 such entries is a huge waste of time.

 

OVERVIEWS 

Start with a good over­view. Like a road­map, it can give you an idea of where you are, where you have to go—and what you have to learn. You can read it in 30 or 40 minutes and re-read it as often as you need to. Once you have a general idea of what the disease or condit­ion is and the options you have for dealing with it, you’ll have a much easier time under­standing the detailed inform­ation in books.

Very few governments provide medical information. The U.S. National Institutes of Health (NIH) and some related sites offer a lot, but their patient materials are not always well-organized and may not tell you much about what patients experience. And even though the pages are reviewed fairly often, you may still find errors, omissions, or inform­ation that is out of date.

MedlinePlus has many brief overviews, but their Interactive Health Tutorials have much more infor­mation. Click on Text Summary for a PDF. If you would rather listen to it, click on Self Playing.

Many hospitals over­views are heavy on photos of happy families and light on details about treat­ments. Some seem to have been written by the PR depart­ment and never checked by doctors. Many parcel out infor­mation over a dozen or more web pages, making it hard to print.

Wikipedia has detailed health pages that appear to be very reliable, but they often seem to be written by and for medical professionals, not the rest of us. Nevertheless, the pages that describe such things as tests and treatments may be helpful to you.

Some nonprofit organizations have useful information, others seem to exist largely to ask for donations. Some national (and some local) support groups are good sources.

Patients also create sites, but many are simply random collections of news releases. A few create carefully research­ed pages that are usually very patient-oriented.

A Health on the Net Foun­da­tion (HON) logo indicates that a site complies with HON stan­dards, but only if it was review­ed by HON. Look for “This site complies with the H O N code standard for trust­worthy health infor­mation: verify here.” (Not all valid medical sites request certification.)

 

ON-LINE VIDEOS 

Video has the potential to be very helpful to patients who want to understand medical treatments, but that potential is rarely realized. Few offer useful visual information.

Many studies by physicians who rated online medical videos found the same prob­lems as this study of videos about prostate cancer:

The information content was fair or poor for 73% of all videos.… YouTube is an inad­equate source of prostate cancer inform­ation for patients. [ 2 ]

Some videos can be harmful. A physician review of anorexia-related videos found that of the 40 most-viewed videos, almost 30% promoted anorexia. An analysis of 153 vaccination videos found 32% portrayed it negatively and 20% were “ambiguous.” [ 3 ]

Even videos made for medical students are often not very good. A study by surgeons found “the quality of video clips is generally low.” [ 4 ]

Videos are more likely to be useful if they:

A search for cancer on three major video sites produced more than five million hits. But many had nothing to do with cancer, and too many were about questionable cures.

 

MEDICAL NEWS 

This is almost always about things that may—or may not—lead to an advance someday, not any­thing that affects you right now. They are primarily intended to publicize the company, lab, or university that hopes their discovery will become valuable. The most-useful news is about clinical trials, medical-safety alerts, product with­drawals or recalls, and medical fraud and fake news.

Newsletters 

Paper newsletters still exist, but most are sent by email or are down­loadable from web­sites. Many resemble medical news sites, but some offer useful articles by specialists. National support groups are a good place to look for the better type.

Medical blogs 

These have short articles and commentaries by doctors, nurses, and patients. The most useful articles explain such things as how to deal with insurance companies, get treat­ment, or avoid hospital-acquired infections.

 

Medical wikis 

There have been attempts to create medical wikis, but with little success. Most are about specific illnesses or medical spe­cialties. Some are aimed at doctors, some at the general public, some at both. But few seem to be useful to patients.

These official sites are far more reliable:

News feeds & emailalerts 

RSS feeds send summaries of news or updates from sites you select. (But not every site offers RSS.) The texts can be read with the RSS reader that is built into most browsers. If yours doesn’t have one, down­load a free one from the web.

Set up email alerts to notify you about topics of interest.

 

PUBLICATIONS


The fact that information is printed on paper does not mean that it is reliable. But the printing and distribution of books is much more expensive than Internet publishing, so the information is more likely to have been carefully prepared.

BOOKS 

Books for the general public are usually only reviewed on the web. Sites may link the reviews to online book­sellers for a percentage of the sales. This is a legitimate way to raise money, but look for more reviews.

Reviews on Amazon.com may be more reliable because most are by patients or their family members. Local or online support-group members can also recommend books.

Downloadable PDF versions of books offered by social-book­marking web­sites may have been pirated. And the prices may be inflated. For example, one site sells a cancer book for 50% more than the Kindle edition.

Before you go to a bookstore, try your local library or a medical library. Look at the books and take some home. Read more than one. Buy copies of any that seem useful.

Google Books and Amazon let you look at some of the pages on-line.

Selecting books  

These questions may help you evaluate books:

Is it well-organized?

Does the table of contents have a logical flow? Does the author start with subjects you want to know about, or with such things as how you could have avoided the disease or condition you already have? Are chapters and sections clearly titled?

Are the illustrations useful?

Do they help you under­stand procedures? Do they serve a purpose or are they things of no practical use to you, such as a slide of cancer cells?

Does the index seem large enough?

Compare indexes of several books. Are they about the same length? A brief one might mean the publisher did not consider the book to be worth much time and expense.

Is it easy to read?

Look at different parts of the book. Are the sentences and paragraphs long or short? Are the technical terms clearly explained?

Is the author a doctor?

A good reputation and expe­ri­ence help, but they don’t mean a book is well written or contains everything you want to know. When doctors col­lab­orate with professional writers, the books may be easier to under­stand and more patient-oriented.

Was each section written by a different author?

If different kinds of specialists contribute, a book might be more accurate (for example, the Mayo Clinic books). But if they are from different insti­tu­tions and not carefully edited, they might contradict each other and important infor­ma­tion might be left out.

Is it about evidence-based medicine?

Avoid alternative therapies and focus on treatments that have been scientifically tested.

Are the book and the chapters balanced?

If a doctor wrote it, is there enough information about all the possible cures or treatments? Or is the doctor’s own specialty presented as superior to the others?

Was the author a patient?

Patients rarely write books if every­thing went well, so they may help you understand the pros and cons of different treatments.

How old is it?

A lot can happen in just a few years. And the publication date does not reflect the state of the art at that moment because books take a long time to write and publish.

The disease or condition and forms of treatment are not the only things you should learn about. It pays to know about misdiagnoses, medical errors, hospital-caused complications, and other problems that are not directly connected to your treatment.

Dr. Atul Gawande:

Dr. Jerome Groopman:

Dr. Groopman and
Dr. Pamela Hartzband:

NEWSPAPERS AND TV

Few newspapers, magazines, online publi­cations, or TV news shows are willing to pay for the long investigations that are needed to get the facts. The best articles about health and medicine have traditionally come from major news­papers like The New York Times and The Washington Post, or mag­azines like The Atlantic and The New Yorker.

The news business is usually as much about filling a certain amount of time or space as it is about informing the public. News­papers and TV news get most of their medical news from press releases, and they don’t seem to look at them very closely. (For example, those stories about tomatoes curing or preventing prostate cancer that are reported on the ten o’clock news roughly every six months.)

Worse, it often becomes degraded along the way. For example, a study presented at a medical symposium in 2008 was new only in the sense that it was recent. Its results were essentially the same as earlier studies. [ 6 ]

The abstract was titled Disease trajectory of untreated localized prostate cancer in elderly men: a population-based study.

The press release headline read Most Older Men with Early-Stage Prostate Cancer Can Avoid Treatment.

The Associated Press called it Delaying Prostate Care OK for Some.

And the Denver Post changed that to the confusing and mis­leading Study: Passive prostate route just as potent—and ran it on the front page as if it were really news.