Let's talk about one of the absolute best things in the world that the internet can be used for: researching medical situations. You must be careful not to drown yourself in information. I'd suggest reading this over first, and then starting to nose around. These are the bona fides: the meat and potatoes research sites and locations for information that you need.
Right when you start
You should do several things when you're starting to research a medical condition. First, I would suggest that you set up a Yahoo Group or a Google Group for the condition. Name it something like BillCancer and put everybody who is helping you onto the group. Then post whatever information you find onto the group. There is too much information to write down or log. You need to grasp at large amounts of information and have a way to scroll back through and find stuff that you looked at a week ago. If people don't want to see the information on their email, they can simply set their group options to send them no mail. But they can still log in and get the information if they want it.
Next, you need to find support groups. Usually there is a specific support group that is absolutely the best for each condition. Some conditions, like some cancer and infertility (I don't know all that much, only what I've seen), have a lot of groups. Try to find the best one and make sure that they are not all from one doctor or hospital. Different points of view will help.
Third, just as a matter of course, try to find out who are the absolute top doctors and medical treatment centers for this treatment.
The information in these pages is aimed at dealing with the information around getting well, by the way. Not the emotional support needed. Not any of the touchy feely stuff. Make sure that you take good care of yourself, if you're a caregiver, and good luck.
Internet overviews and tutorials
The Learn the Net site has good information in english, spanish, and french.
If the person that you're going to be dealing with has never used a computer, you might want to take a look at a nice little email called How to Help Someone Use a Computerby Phil Agre. Classic and will remind you to not alienate your "customer."
Internet magazines
For basic medical research
Document providers (of several) for obtaining full text of research papers:
Medical dictionary
Health and medical calculators:
National Library of Medicine for abstracts of research papers published on
various treatments:
FDA USA Food And Drug Administration
Healthgate performs free searches of medline/cancerlit. You can purchase the full text of an article for a fee.
Research long-shots
This section contains research sites which are not aimed at patients. I wouldn't suggest spending a lot of time on them, but you might want to try to make contact.
The Cochrane Library consists of a regularly updated collection of evidence-based medicine databases
Many other sites seem to have consolidated into NewsRX.com. I haven't used it, but .. there you go.
Cancer information
When you are first trying to figure out a diagnosis and treatment plan for cancer, go to the Association of Cancer Online Resources (www.acor.org). Type in the name of the condition that you have been diagnosed with (or are researching). The engine will show you which lists are about your condition. Join the list for your condition.
CancerEducation
Steve Dunn's site re how clinical trials are run:
University of Pennsylvania's Oncolink
National Cancer Institute statements on treatment of various cancers:
The ICRP allows users to search, browse and sort cancer research by Type of Cancer, Area of Research, or Funding Organization.
NCI designated comprehensive cancer centers:
Health-Track - for cancer incidence stats in your community
The cancerlinks web site, created and maintained by a breast cancer survivor, is devoted to helping people search the World Wide Web to learn more about cancer, its effects and its treatment. Here is their page pointing to cancer sites all over the world, using a library of congress classification.
Another good site,which supports blogs from every user, is Canceronline.com. You can go there and start your own blog for free.
Bone marrow transfer information
NBMTlink (National Bone Marrow Transplant Link)
.See especially the "Survivor's Guide", which
includes entire sections on emotional preparation for the trip, ideas for what to bring, etc.
Drug overviews and information
Drug information such as route of administration and adverse effects
Interaction of citrus fruits and some drugs (for example, liver enzyme Cytochrome P450)
Drug assistance programs from pharma companies
FDA information on gaining early access to unapproved new drugs:
Medical treatment overviews
This section contains information on dealing with medical treatments
How radiotherapy works
How chemo works
Not comprehensive, but a good starting point
Caring for a port (venous access device)
Difficult diagnosis links
Two links which might help with a neurological or rare disease diagnosis are:
Neuroland has Clinical Neurology information for physicians & health professionals.
Clinical Trials access and information
Centerwatch has a clinical trial listing service and free patient notification service.
NCI clinical trials search engine:
Acurian search for pharma company clinical trials
Notes on searching for clinical trials
This excerpt is from someone's post. I saved this little bit because it gives very good advice on how to go about a search.
is the URL (homepage) for the NIH database and It includes the majority
of the trials going on nationally. But the results returned from querying
their database can be deceiving. For example, searching on the
keywords "lung cancer" returns several hundred trials, but misses some interesting trials for "solid tumors" that include lung cancer patients.
I ended up setting up a search that excluded all trials with the keywords Taxotere, surgery and radiation since they would either be irrelevant (X cannot have any more surgery or radiation, at least to the lungs) and I discussed the Taxotere exclusion above. I ended up with a list of about 155 trials. I used an old fashioned method to pare down the list. I printed out the header listings, opened up the link for each trial and crossed out the ones that wouldn't work with a black marker."
Alternative treatment overviews
A brilliant man named Keith (long may he stay healthy!) has started an absolutely wonderful group on Yahoogroups called experimentalandunconventional@ yahoogroups.com. Keith is fighting colon cancer, which has about the same rate of success with various alternative treatments as it does with standard treatments. This puts the colon cancer people in an interesting situation on the forefront of medical research. This group talks about experimental and alternative treatments. Information on the group is sourced, results are quantified, and the links that you can get through the group are absolutely fascinating and excellent reference, no matter what your condition.
[Ed. Note: Sadly, Keith passed away in November, 2004. He is very strongly missed, and his group continues.]
Sites that evaluate or list alternative treatments
Quackwatch, Your Guide to Health Fraud, Quackery, and Intelligent Decisions (operated by Dr. Stephen Barrett) is pretty darn cool. Check it out. If you use their 16-site search engine, you can search the National Council against Health Fraud's stie, as well as all of the Quackwatch sites, which includes info on dental, diet, chelation... you name it.
Office of Complementary and Alternative Medicine (OCAM) at NIH
Patient advocacy
There is something called Patient Advicate Foundation which might be of interest. I quote from their website: Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. "
Finding support groups
Connecting up with the proper support group can make a world of difference when you're facing an illness. Do it. And you can just Google "How do I find an "X" support group?" Use Google and the resources listed on this website to find an online group and then start talking.
The American self-help clearinghouse publishes a national directory of support groups. You can type in a condition at their site and they will list support groups.
