Lazette Gifford
Publisher & Editor
zette@cableone.net

 

The Writer's Guide to Medical Websites

By Patricia Loofbourrow, MD
© 2006,
Patricia Loofbourrow


Writers often use the internet for research on illnesses and contemporary medical equipment, drugs, or other treatments. If your plot hinges on your character having (or developing) a certain illness or receiving a certain line of medical treatment, the last thing you want to discover is that your time and hard work writing a story has been spent on sites that were inaccurate or gave "fringe" treatment options. This might mean doing a complete rewrite to make the story conform to reality.

If your character would normally use an unusual treatment, this is fine, but you need to know what is standard, what is "alternative" and what are considered outright "fringe" treatments in advance, so you can develop your story and character properly.

Some examples:

(Note: I am not passing judgment on any particular treatment plan. That is between you and whatever health care provider you choose. I am just giving an example of what is at this time considered "fringe" vs. "standard" treatment of breast cancer.)

Scenario 1: Penny Standard is diagnosed with breast cancer. She undergoes surgery, radiation and chemotherapy. Her family is supportive or not, and she recovers or doesn't. Out of her struggle she changes and becomes a better person.

Scenario 2: Lucy Fringe is diagnosed with breast cancer. She rejects current medical treatment (why?) and goes into the desert to commune with a group that treats illness with sunlight passing through crystals. Her family is supportive or not, and she recovers or doesn't. Out of her struggle she changes and becomes a better person.

These are two perfectly legitimate story lines. However, if you don't know what the current symptoms and standard medical treatment are for breast cancer, both those stories are going to flop for any reader who 1) is in the medical field, or 2) has had or knows someone who has had breast cancer. They just aren't going to respect you if you don't know what the basic treatments are, the chance of survival, or any side effects of breast cancer or of the various treatments. Penny and Lucy will be vitally interested in these topics, and so should you.

When you go online and do a search about an illness, a huge list of websites appears.  You find newsgroups, discussion groups, forums, articles, and sites of all kinds.  Unfortunately, not all of them are medically accurate or useful. In fact, a lot of them aren't. How can you tell? Here are some guidelines to follow:

1)     Who wrote it?

·        Is it clear who owns or runs the website, who wrote the article, or who is posting in a discussion group or forum?  What are their qualifications?  Are they medical personnel?  What training have they had in their field of study?  Most websites by professionals will include a listing of the professional's qualifications and schooling that can be verified. 

·        If a forum or group that gives medical information is moderated, what are the moderator’s qualifications?  While people not medically trained may have accurate information, they also may not. 

·        Who provided the original information?  Are they qualified to address the subject matter?  A "noted researcher" or "world-renowned scientist" would insist that his or her name and qualifications be attached to reputable work, even if it is controversial.  Has this person published any other work?  What sort of education or training does this person have? 

2)     Where did they get it?

·        Is the information based on scientific study or is it an opinion? Good scientific studies involve large groups of people (at least in the hundreds) and have a "control group" that does not take the treatment studied, in order to compare a certain treatment to doing nothing. Alternately, the study may compare one treatment to another, to see if one works better. Think also about the sponsor of the studies and what the sponsor may have to gain by a certain outcome.

·        Does the website contain references to and from recognized peer-reviewed scientific publications?  This is a clue that the site is legitimate.  Your doctor or friends in the medical field can tell you if a journal or magazine has a good reputation.

3)     What are they saying?

·        The site or article should weigh the evidence and acknowledge the limitations of the way the information was obtained and the amount of benefit.  Beware of "hidden truths," "secret formulas," and sites or products that guarantee a certain result. 

·        Beware of sensational claims and conspiracy theories.  They are usually false.  They might give good ideas for SF stories, but for a contemporary medical novel or a medically-related plot twist, you'll want your facts to be accurate.

·        Arguments and claims should be based on fact, not fantasy.  Beware of bold statements that are not backed up with evidence.  Just because someone claims to have a "theory" doesn't mean it's true!

4)     Why are they writing it?

·        What is the motivation of the site or article?  There is nothing wrong with selling products or enlisting you in a cause, but the motives should be clear.

5)     How does this relate to other information I have?

·        The information should make sense, and should not deviate too far from other sources, especially if the other sources are more reliable.  If it seems too good (or too terrible) to be true, it probably isn't true!  Remember that being on the Internet does not guarantee accuracy.

 

Don't be afraid to use your personal doctor or friends and family in the medical field for information. They can often direct you to useful resources or provide valuable critiques for your plot line.

Online medical information is only as good as those who are giving it.  Use your head, be wise, think about what you are reading, and look for biases or wishful thinking.  This will allow you to make the most of your experience online.