How DO you search the web about an illness?

Searching the web for medical information can produce far more than an abundance of material on any topic you may care to name. How do you start to sift through and adsorb that information, particularly if it is medical?

At this practice we have always encouraged our patients to know as much as they can about their illness, and further, to participate in decision making once armed with that information. Now, using the internet, patients have an unlimited access to medical information. This is creating some strains on the profession. Here at this practice we welcome this change and are adapting to it.

On this page we would like to set out certain concepts about retrieving medical data (we use a real example) and then also how to interact with us about what you have found. If you follow this advice it will help yourselves and also us as doctors and nurses with the management of your problem. Again we stress we want you using the internet in conjunction with your consultation and will be only too happy to discuss your findings or concerns with you

You will need to assess the following issues:

1. Harvesting the information

Source: Reliability - Recency - Validation

How reliable are the sources found?
Is the data less than 5 years old (an accepted standard within the profession)?
What proof if any is put forward with the findings to validate what is said?

Presentation: Scientific - more general - disease association or group

If the data is a proper medical scientific presentation, then it will contain extensive scientific proof, presented with its statistical analysis and also references to other research sources.

Sometimes a disease group or group of medical people (eg a professional college) will put forward an extensive statement about a disease or a syndrome without all the scientific proof being presented. These used to be called a consensus statement but more lately we are seeing  therapeutic guidelines

It is always considered essential that there are references available to back up what is being said. In the absence of such reference material the data must be considered somewhat dubious

Alignment: central - skewed 

Does the presentation conform with what others are saying in similar articles?

Or is this opinion so different form everyone else that it must be biased in some way?

We have all heard the phrase "lying with statistics". Well medical data would have to be prime material for this - by quoting only part of the story. Our example below demonstrates this all too well.

Integrity: Book or journal publication versus the total freedom of web publishing

With formal publishing you know the publisher himself has usually gone to extensive lengths to ensure the material put forward is verifiable. There is a certain inherent safety in reading about a disease from these sources and often they are very well referenced. To the distinct contrary anyone can publish anything they wish on a web page. There is no control. This site is distinctly an example of that but hopefully you will see that it presents mainstream medical opinion

Tested: The authors can show demonstrable benefit from their claims 

Here we are mainly concerned with what happens in the arena of treatment and management of a disease. It is crucial that a treatment does work. If it does nothing then is this not charlatanism? Sometimes even the profession sees therapies put forward that are positively injurious.

All too often we see cures proclaimed that are based on TESTIMONIAL evidence. Never trust or believe a testimonial.

References: Must always be included and be verifiable

2. Data analysis

So in analysing what you read on the internet look at where it comes from:

Original research (for example on this website we present data on the incidence and surgery of skin cancer in the practice, and also our findings of the monitoring parameters of diabetes from the practice). Research initially presents opinion. Later this becomes verified by others drawing the same conclusion. Look at the statements.   Are the statements made justifiable, or are they stretched beyond firm trust?

Retrieval from medical texts or journals

This is a long standing accepted practice within the medical profession. Before the internet this was the only method of searching recent medical advances

Disease association or self help groups

We have covered this above

Retrieval from an internet publication that is unverified

You have found page X or even site X and there seems to be a lot of data. A careful analysis shows a lack of credentials for the person putting forward the data. See the PJ Kelly example below

Finally can you find other internet sites putting forward the same concepts?

3. Keyword Searches

What they find and why.
When you search by keyword or keyword group you expect you are going to find a document containing those words and the more relevant or the higher the incidence of those words in the document the more the chances of being found. Unfortunately this is not what happens. The homepage of an internet site has a special field which you cant read but is read by web robots as they "spider" a website for indexing. It is the contents of this field that show first on the list on search engine listings. The home page of this website contains all versions of the doctors names at the practice and all possible versions of Laurieton Medical Centre. I could insert the word Bull in this position, embed Bull a few times down the home page and anyone who searched for Bull would find this website ranked in high priority. The message here is to be prepared to discard the first few items on a listing. Some people or organisations even pay to have their keywords found at the top of a list.

An example search
On Sunday 8th October 2000, I used metacrawler power search to research cholesterol to give example to the above statements. It produced 69 listings. I have used several of these as reference sites hyperlinked on the cholesterol page. Try this search yourself and compare to my findings.

(UPDATE: on 7/12/2003 I did the same search - not surprisingly this time there were 4.5 million search results. On the first page there was the same diverse display of opinion for and against and the same lack of credentials on several of the pages)

I did not open every site however first glance let me find the following as useful to this documents presentation of the negative aspects of internet searching by patients

www.pslgroup.com/elevchol.htm Elevated cholesterol - Doctors guide to the internet
I would consider this site too scientific for most patients to comprehend

http://homw2.swipnet.se/~w-25775/ Cholesterol myths - astonishing & scaring facts

(at editing on 2/9/2005 this page is defunct - this info is left to show the example)
I make the following comments. The catchy nature of the words myths-astonishing-scaring are designed to trap your attention. Before opening this document it was clear to me that what it contained would not be mainstream opinion. I was surprised to find on opening it that it was very anti mainstream opinion on high cholesterol disease. This is material from a Professor of medicine purportedly recently practicing in the area of Nephrology (kidney disease). Let us assume the credentials are all true. He quotes two reference sources at the end of his presentation. At first sight they would appear good. I have not checked them. The opinion of the Professor is totally against mainstream medical opinion. No medical journal or publishing house would have put this to print

Another site which I cant find now said: Cholesterol - no fat diet
It meant what it said. There was an intricate explanation of how to shop (in America) without buying any fat. It had yes and no to every food product imaginable. This is so far from mainstream as to also be implausible. What was worse at this site was it was authored by P J Kelly. There was no contact address phone or e-mail. He did not put forward any qualifications. It is a page to be ignored

As a patient you will have to make these decisions as you use the internet

4. Interacting with us

Come in and talk to us by all means if you have questions about what you found. Please don't bring a printout. Copy the page onto a floppy disc as a html page or even simple text. This is so that we can search the document with text search tools rather than read it. Alternatively just jot down the www address and we will look it up here together.

As primary care practitioners we try to know as much as we can hold on any disease. If we have not dealt with a certain disease for years we will be behind on that. We may prefer to use more formal medical sites or even online texts to update our knowledge and then get back to you. 

You are welcome to reverse the whole process and ask us where to go on the web to find something of value for you