Guardian: which medical web sites can you actually rely on?

From: Tam (tamsuraiya_at_yahoo.ca)
Date: 12/07/04 

Date: Tue, 07 Dec 2004 08:10:07 +0000

Surf yourself better

More and more of us are turning to the web for medical advice. But which
sites can you actually rely on? Sophie Petit-Zeman rounds up 10 of the best
resources online

Tuesday December 7, 2004
The Guardian

Dipex
www.dipex.org

When Oxford GP Ann McPherson was diagnosed with breast cancer, she wanted to
know what lay ahead. Thus her brainchild, Dipex (database of individual
patient experiences), was born. Now three years old and the recipient of
several awards, Dipex is the largest collection of patient experiences on
the net. The site contains 85 hours of audio and video clips on 14 health
topics, including cancer, heart disease, terminal conditions and depression.

Personal stories are supported by information and signposts to resources,
and there is informative debate in the growing Dipex community. A patient
with lung cancer explains: "When you're feeling down, you can tap in and
find someone else out there with your problem. It can also help friends and
family understand what a cancer patient goes through."

Limited time and money mean that Dipex is currently far from comprehensive,
and some users with slow connections report difficulties accessing parts of
the site, but it aims to cover 100 illnesses and topics including parental
decisions about immunisation and reports on clinical trials. McPherson hopes
it will be made more widely accessible via hospitals and GP surgeries, but
funding is a big issue. "We have a module on the experience of carers of
people with Alzheimer's, including a testimony from Iris Murdoch's husband,"
says McPherson. The research and interviews are done, but we need £20,000 to
put it on the site."

McPherson may be familiar to many as co-author of the popular Diary of a
Teenage Health Freak, and also runs a children's site at
www.teenagehealthfreak.org.

Children First for Health
www.childrenfirst.nhs.uk

Children First for Health was born last year at Great Ormond Street hospital
in London. The 4,000 pages of content include health information, personal
experiences, games, competitions and practical information about UK
hospitals. The site is divided into sections for tots (0-3 years, with
guidance), juniors (3-6), kids (7-11), teens (12-15) and "16+".

The information on the site, which is financed by the charity Wellchild, is
provided by children's writers, NHS professionals, charities and support
groups. As site manager Gary Loach says: "We don't reinvent wheels. Our work
involves identifying good content and much of the site development happens
with children who provide, assess and endorse content and who are involved
in building online communities."

Here's a sample first-person story, by a teenager called Clare: "I have and
hate acne. People insult your looks with rude comments. You feel as if
you're not as good as everyone else. You get self-conscious. Skin is a very
important part of your appearance. It's not easy for people to look past
appearance; they focus on it a lot.

"Being a teenager can be hard enough without red spots all over your face.
Sometimes I find it very hard. I'm on antibiotics but they haven't worked
very well so far for me. I've had spots since I was 10."

National Voices Forum
www.voicesforum.org.uk

The Voices Forum describes itself as "run by mad people for mad people", and
states: "You can rebuild your life into something meaningful and fulfilling
... assisted by those who have been there - and done it!" Supported by the
charity Rethink (formerly the National Schizophrenia Fellowship), it is a
gateway to hundreds of pages, from poems to reviews of conferences, books
and films.

Personal pages allow people to make their own websites and tell stories of
living with severe mental illness, such as this woman's experience of
schizophrenia: "I first began to show signs of schizophrenia in 1966, at the
age of 19. I was admitted to my local psychiatric hospital - a large
Victorian ex-workhouse with over 1,000 patients ... I was to stay for five
years! ... I realised I had sunk as low as I could go, and something just
told me that I had to get out of the system. If I didn't, I would be
institutionalised for life. I married the following year. The marriage did
not last, but it produced three lovely children.

"I have slowly rebuilt my life - there is no magic formula. I weaned myself
off drugs when the children were small. I haven't, at least, needed formal
psychiatric care of any sort. Nowadays I have a support system of family and
friends, and am helped by religious belief. There can be life after
schizophrenia: in my case, nearly 30 years of a satisfying, rewarding
(though not always easy) existence."

Best Treatments
www.besttreatments.co.uk

A good bet for more conventional information. Very patient-friendly, the
site draws from Clinical Evidence, the BMJ's survey of medical research. "We
can help you understand how treatments work and help you decide which are
best for you," it says. "We'll also tell you about the causes and symptoms
of your condition. And we'll let you know what you can do to help yourself."

There are frustrating gaps, but it hopes to expand to provide coverage of 77
conditions, from gastric reflux to impacted wisdom teeth. It has a good
section on what doctors mean by risk
(www.besttreatments.co.uk/btuk/howtouse/7434.html). For example: "A risk is
the chance that something (usually bad) will happen because of something
else. For example, if you smoke a packet of cigarettes a day for 30 years,
you have a 10% risk of dying of lung cancer.

"If you're a man and your surgeon says you need your prostate removed,
there's a risk you'll have erection problems afterwards. Your surgeon may
think the risk is too low to worry about. But you may think any chance is
too high. This is why you need to understand what risk means - so you can
take part in treatment decisions."

Dr Foster
www.drfoster.co.uk

"Your definitive source of information on UK healthcare services", as Dr
Foster describes itself, was launched in 2001. It collects and analyses
information on the availability and quality of health services in the UK,
and encourages patients to use it "to make the most informed decisions on
how to access the right healthcare".

Dr Foster also works with the NHS to analyse and improve patient care, in
part through the Dr Foster Unit at Imperial College, and content includes
guides to services from births to complementary therapists. Patients'
Association president Claire Rayner says of it: "This is a truly remarkable
resource. It's the most authoritative measure of healthcare standards
anywhere in the world."

If you're interested in birth statistics, Dr Foster gives you, for example,
all the facts and figures on giving birth in the UK, covering every
maternity unit in the country, allowing you to compare everything from
numbers of caesarean sections to home birth rates.

Cochrane Collaboration
www.cochrane.org

The comprehensive and authoritative Cochrane Collaboration reviews and
updates evidence of effective treatments. An international charity, Cochrane
is supported by funders worldwide and reviewers often volunteer time to
collect data. However, it is not designed to tell individuals what to do,
and its reviews aren't exactly bedtime reading. Offerings include
"Antibiotic regimens for suspected early neonatal sepsis".

Bandolier
www.jr2.ox.ac.uk/bandolier/

Bandolier attracts over a million lay and professional visitors each month.
The impetus behind it was to find information on effectiveness (or lack of
it), and put the results forward as bullet points of things that worked and
those that did not. Information comes from systematic reviews,
meta-analyses, randomised trials, and high-quality observational studies.

Much of the content comes from "translating" Cochrane, as the site admits:
"Those [reviews] that look interesting are read, and where they are both
interesting and make sense, they appear in Bandolier."

Bandolier is free to users, dependent on sponsorship and the goodwill of
Oxford University medical school IT resources. Currently available are
studies on fruit and vegetable intake and cancer risk, diet and prostate
cancer risk, and electronic pain diaries for children.

HealthWatch
www.healthwatch-uk.org

HealthWatch supports scientific testing of conventional, complementary and
alternative treatments, and one of its main aims is explaining why clinical
trials - often portrayed as dangerous games for human guinea pigs - are the
fairest way of distinguishing bad treatments from good. It features
newsletters and on-site debates, including a correspondence about whether
analysing hair can reveal zinc deficiency. While the argument remains
unresolved, fascinating nuggets have emerged, such as the fact that zinc
deficiency may be linked to conditions from autism to hyperactivity.

Quackwatch
www.quackwatch.org

HealthWatch has a link to the antiquackery ring, of which an established
example is Quackwatch. Run by an American doctor and his technically
supportive son, the site describes itself as "a nonprofit corporation whose
purpose is to combat health-related frauds, myths, fads, and fallacies".
Quackwatch, which has attracted accusations of being a front for industry
and too ardently in favour of conventional medicine, currently includes a
debunk of the myth that wild yam cream protects against osteoporosis and a
section called Why Ear Candling Is Not a Good Idea. A doctor explains: "
'Ear candling', also known as auricular candling or coning, refers to
various procedures that involve placing a cone-shaped device in the ear
canal and supposedly extracting earwax and other impurities with the help of
smoke or a burning wick", and concludes that it is ineffective and
dangerous, mostly because you could end up getting burnt by the wax.

Hitting the Headlines
www.nelh.nhs.uk/hth

If you're suspicious about health stories, this is the site for you. HtH
scans the media for stories about treatments or tests and puts a summary on
site within 48 hours, the idea being that it will take you a couple of days
to get to see your GP after reading the story, and the digest will help them
help you. Each entry unpicks the evidence, questions the reliability of the
conclusions, and gives references and consumer information.

Part of the NHS National Electronic Library for Health, the archive
stretches back to May 2001. Subject-matter includes whether water is better
at staving off dehydration than other drinks, such as tea and alcohol, and
its latest story, on whether bad breath really can be "zapped by a laser".
In case you're wondering whether the laser works, the site concludes: "All
things considered, including the small sample size of 53 patients, this
study does not provide strong evidence about the effectiveness of the
procedure."

http://www.guardian.co.uk/online/news/0,12597,1368032,00.html

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