Web wonder
Reproduced from Issue 107 of Arthritis Today
People with arthritis can learn a lot about their condition
from the Internet. But there are pitfalls to be avoided….
A little knowledge is said to be a dangerous thing.
Certainly, GPs could be excused for thinking that way – when faced with a dozen patients quizzing them for more details on the latest quack arthritis cure they've read about on the Internet.
But although it's true that the Internet can be used and abused, it remains a potent new source of information for the clued-up arthritis patient. Where else could you find the latest post-marketing data on the new anti-TNF therapy drug Enbrel, or up-to-date facts about the best type of hip replacement – at the touch of a button?
The fact is that the Internet is the way forward, and its rapid development over the past couple of years has opened up access to information that would have been unthinkable even a decade ago. It means a radical shift in the way that patients can deal with their illness by enabling them to find out more about their condition, about available medication and other treatments. And it is resulting in an increasing shift in the relationship between doctor and patient, as the patient becomes better informed.
Some doctors already communicate with patients over the Internet and through email, and the concept of "cyber-clinics," offering diagnoses and treatment to patients over the Net has already become fact in the States. And in the UK a small number of forward-looking rheumatology outpatient departments provide Internet access for patients while they wait to see their rheumatologist.
Dr Badal Pal, a rheumatologist at Withington Hospital, Manchester, has already demonstrated that cyber-clinics could work.
In a small pilot project, he demonstrated that in 86 per cent of cases, rheumatologists could make a provisional diagnosis of a patient and work out a management plan for their care, from information about symptoms sent via email from a GP or practice nurse.
"Most people have to wait weeks, even months, to see a rheumatologist, and we need to cut down that length of time; they should be seen within a week," said Dr Pal. "The cyber clinic would help to do that, or it could provide an interim service for patients awaiting a rheumatology consultation. Those who were unhappy or uncertain, or still wanted to see a rheumatologist would be able to do so, but the idea would be that most of the time patients would be happy for their GP to continue with the management of their care. It would not be a device simply to fob patients off."
The Internet as a source of patient information has enormous potential, and as the theme for its Education Week (January 5–12) arc is encouraging people to "bone up" on the Net to keep themselves up to date with all the latest news.
The charity has produced a simple Beginners' Guide to the Internet, offering basic, practical assistance to Net newcomers.
"The Internet is the future, and in the new Millennium it's increasingly a vital tool," said Dr Elaine Hay, chairman of arc's Education Committee. "Many arthritis patients are older people who might not know very much about how to gain access to the Internet, or what to do once they've gone on-line. We want to show them that it's very simple, and that they shouldn't be intimidated or put off by jargon."
Sharon Kilty, aged 36, a former nurse from Cornwall who has had psoriatic arthritis since she was a teenager, is an Internet enthusiast. "Access through the Internet and CD-ROMs to medical sources would help people find out about the different sorts of painkillers that are on the market, and more importantly, it would provide information about their side-effects as well as the latest research being carried out into painkillers, NSAIDs and second line treatments," she said.
"Being armed with the information means that patients can negotiate their care with their consultant. The consultant is more likely to have a patient who will comply with their care package, and because they feel they have been heard and understood, patients will consequently be more informed and in charge of their lives again."
Patients would also benefit from accessing the Internet in the early days of diagnosis to learn how to look after their joints effectively, rather than waiting until they had deteriorated sufficiently to be referred to see a physiotherapist. "It would be nice to email our physios and OTs as problems arise, thus avoiding deterioration while waiting for our appointments," adds Sharon.
"Better still, I would like to see a computer link conferencing physio sessions where groups of patients who are housebound could all be on-line together, doing their exercises under the supervision of the physio. Maintaining the quality of life is so important, and being able to contact help quickly though the Internet or email would make such a difference."
Janet Scammell, who has severe osteoarthritis, and is involved with the Disabled Living Centre in Bristol, is another regular Internet user. "My son told me to enter the 1990s and came and set me up, and I now use the Internet a lot," she says. It's ideal for people who are housebound so that they can communicate with each other and feel less isolated. On a lighter note, I used it to send out invitations to my 60th birthday party – I saved a fortune in stamps!"
arc has funded a number of educational projects aimed at medics and health care professionals, using interactive multimedia CD-ROMs.
- Doctors in Southampton are working on a project to produce a teaching package for medical students to fill the gaps in medical students' knowledge of rheumatology. It will include a video using a professional actor and volunteer patients to illustrate physical examination, and to simulate clinical situations in an interactive fashion.
- A team based at the Staffordshire Rheumatology Centre in Stoke on Trent and Keele University have developed a "virtual rheumatology" multi-media package for nurses in the clinical anatomy and examination of the shoulder and knee joints to help them more about real-life situations.
- An interactive video package aimed at improving the teaching of medical students has been developed by researchers at the Kings Mill Centre in Mansfield and the University of Glasgow. Students can select one of six case studies contained on a CD-ROM and the "patient" will respond verbally on screen, enabling the student to make a diagnosis and suggest treatment. The CD-ROM will be made available to all medical schools.
