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.
Local and on-line support groups can provide information and emotional support.
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.
- about support groups http://en.wikipedia.org/wiki/Support_group
- National Cancer Institute support services http://goo.gl/pR1gs
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.
- ACOR cancer communities www2.acor.org/listservs/
- PatientsLikeMe www.patientslikeme.com
- e‑patients.net http://e-patients.net
- e–patient’s white paper http://e-patients.net/e-Patients_White_Paper.pdf
- Care Pages https://www.carepages.com
- rare diseases http://www.orpha.net/consor/cgi-bin/index.php
- Journal of Participatory Medicine http://www.jopm.org
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.
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.
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.
Start with a good overview. Like a roadmap, i t can g i v e y o u a n i d e a o f w h e r e y o u a r e , w h e r e y o u h a v e t o g o —a n d w h a t y o u h a v e t o l e a r n . 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 t h a t d e s c r i b e such things as tests and treatments may be helpful to you.
S o m e n o n p r o f i t o r g a n i z a t i o n s h a v e u s e f u l i n f o r m a t i o n , o t h e r s s e e m t o e x i s t l a r g e l y t o a s k f o r d o n a t i o n s . S o m e n a t i o n a l ( a n d s o m e l o c a l ) s u p p o r t g r o u p s a r e g o o d s o u r c e s .
Patients also create sites, but many are simply random collections of news releases. A few create c a r e f u l l y r e s e a r c h