NET12 Topic 1.3 Health: What My Doctor Didn't Tell Me! Activities

Select a particular health topic that interests you for any reason (it could be a friend or relative's medical condition, for instance).  Find out more about the topic using the Internet. While you are doing this, note down the main ways you'll begin looking and your process of selecting useful sites.  What are the criteria by which you'd select sites?

 

OK, I've selected breast cancer.  I will start my search by googling for a national Australian non-profit organisation.  I'm already pretty sure there is one. The reason I am looking for an Australian organisation is that I feel it will have the most relevant information to sufferers in Australia.  I'm looking for a large organisation with credibility, a respected reputation, the backing of respected medical institutions and one who conducts independent research programs (to further the search for a cure) because I want to find out about the cutting-edge of treatments for the condition.  I'm also looking for government organisations because I feel they would be long-standing, well-funded and likely to have a lot of credible information and statistics.

I've come across www.nbcf.org.au , the National Breast Cancer Foundation.  Looking through their corporate information and FAQ shows .

I've also found a government-funded organisation's site, the National Breast and Ovarian Cancer Centre (NBOCC), which is "Australia’s national authority and source of evidence-based information on breast and ovarian cancer" according to the site.  These are sites I would trust, not only for the reasons above, but because their websites have comprehensive information about the personnel involved, contact information, their mission statements and goals; they appear to cover all the bases.  Not to mention the massive online reserve of information, downloadable resources and fact sheets, and links to other more specialised resources.  There are signs and symptoms, without being super-specific, encouraging women (or men) who experience the symptoms to see a doctor.

How would you say your knowledge of the topic has changed in the course of this research?


I had no idea such a massive amount of information about this condition was available online.  It's incredibly detailed and covers the full spectrum of the disease from symptoms and diagnosis, treatment, the effects on your life and your family, and outcomes.  Not to mention all the fundraising, research and support.  The sites I chose after doing a few different searches ended up being the top-listed ones in a Google search; the most popular and relevant? The disease I chose was not really one that lends itself to online or self-diagnosis and self-treatment so I did not really find any sites that offered this; I think it's well accepted that you need to see a professional when you have any type of cancer!  There is lots of 'apomediary' information available, from support groups, to sufferers sharing knowledge around too.

NET12 - Health: What my doctor didn't tell me.

How many people here have gone into the doctor and said 'I looked up my symptoms online, and I'm pretty sure I have x, I read that y is the best treatment, so could you please prescribe me some of that?'

I've actually been guilty of this, a couple of times. It can be very hard to get a doctor's appointment in the small town I live in, and there is often a wait of two weeks for non-serious complaints.  I suppose you could call me a bit of a hypochondriac when I feel sick, I always worry it's always something serious! So, considering myself a fairly adept researcher, I have searched online to get an idea of what might be wrong.  In the first instance the doctor agreed with me, and on the second he didn't.  He said that it can be a double-edged sword, trying to self diagnose yourself, because all of the factors (for example, symptoms, family history, general health) need to be considered in relation to each other to achieve a likely diagnosis.  Health professionals are just that, professionals who have studied and learnt a great deal and are considered experts.  Doctors are human though; they can make mistakes. I have been to a couple of dodgy medical centres in my time when unable to get an appointment with my regular doctor.  One particularly terrible experience ended up with me in hospital, after a doctor (who ended up not being particularly knowledgeable about a specific condition) switched my medication to another type without the proper withdrawal periods being observed.  In the end I found that information readily available on the pharmacological information sheets available on the internet. He just hadn't read it, through lack of time or perhaps innattention, I will never know.  So my conclusion is that you need to let professionals do their jobs and place a fair amount of trust in what they say being reliable; but it doesn't hurt to make attempts to educate yourself where possible and to be sure you are on the right track treatment-wise.

I would say I actually trust other, ordinary people in a similar situation more than an expert, but what does everyone else think?

People suffering a particular condition who may have spoken to a number of doctors, pharmacists and other health professionals are going to have a range of sources to call on when you talk to them about that condition.  Perhaps they have made judgements on some of those opinions and consider them 'right' or 'wrong'. It's hard to say definitely one way or another whether they would be more or less knowledgeable (or possessing of correct information anyway) than your average doctor who has had to learn about many many conditions and would probably follow accepted industry standards as to how to diagnose each condition.  In some cases maybe the individual sufferer/ordinary person who has educated themselves about their condition from a range of sources might be more trustworthy to me.

Do you use apomediaries when you research your health?
I haven't in the past; but having learnt about the types of apomediaries that are out there during the studying of this unit I probably would in the future.  One example is the thyroid sufferer and apomediary Mary Shoman.

I'm also curious to hear what people think about the privacy issues raised in Eysenbach. Do you have qualms about openly discussing health matters online and having them come back to haunt you?
I think it depends on the health problem! Some types of health issues are considered taboo in most public conversations; if you had a particularly nasty STI you probably wouldn't discuss it at work or on the bus, would you?! and if you are identifying yourself in any way online there is a chance (perhaps only remote) of people finding out that you otherwise wouldn't want people to know.  So I wouldn't discuss that sort of thing openly online.  I might discuss more 'socially acceptable' health issues, that I would otherwise not mind everyone knowing about.