Surfing for the ailing

Your family doctor has diagnosed your recent headaches as migraines

Your family doctor has diagnosed your recent headaches as migraines. Taking on board the remedy suggested, you decide to find out more about your condition. Entering the word "migraine" into a search-engine, you are offered 44 matching sites. You choose one. Why that particular one? No reason - to you they are all the same. This particular site has the explanatory note: "Information, resources, support, links, and an online journal for sufferers of migraine, and other headaches".

You read, scroll and move to other sites. Later, armed with sheaves of printouts, you return to your doctor and, filled with indignation, demand to know why all this information was not conveyed during your consultation. Your doctor will, in all probability, respond with a look of pained resignation.

Such a scenario is neither far-fetched nor uncommon. Increasing numbers of patients are arriving in doctors' surgeries with reams of Internet-culled data confirming they are the sorry sufferers of obscure conditions and require radical treatment programmes.

This was one of the reasons John Gibbons set up his website irishhealth, (www.irishhealth.com), one of a number of Irish health portals launched this year. He has a background in publishing for healthcare professionals, and his enterprise, he says, recognises the "importance of the Internet as a publishing medium".

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According to Gibbons, irishhealth.com provides a mixture of current news and background information. The most popular destination on the site is the "embarrassing ailments" section, which suggests to him that Irish people are too busy, too lazy, too anxious or too embarrassed to discuss certain conditions with their doctor.

Concern expressed by doctors about the appropriateness of health information on the Internet for the Irish market was another reason behind setting up the site, Gibbons says. "Our links with the Irish healthcare profession are extensive. We have about 60 GPs available to us for consultation on developments for the site."

He says the site will give information to people who have contacted their medical practitioner or are about to do so. He stresses that the site avoids giving product-specific advice, which remains the role of the doctor.

The site was designed for people with low technical experience, its articles are written with the lay person in mind and its aim is to satisfy the information-hungry patient. "If you have multiple sclerosis, you don't just want to read a 1,000-word article. This is a life-long condition. You want to read buckets of information. Therefore, we are trying to act as a complementary service to GPs," he says.

A similar site for health professionals is planned: "It will probably be accessible through irishhealth.com, through a password only. It will include educational, training and other resources that a GP is likely to need, all held on a protected area of the site." E-business will also soon feature on the site.

"We are not shy about saying the site has to pay its way. Staff and development costs are huge. When people are in an area where they are researching and looking up heath issues they will want in some cases to complete that with the purchase of products. Obviously we will make that available," Gibbons adds.

Driving the development of the site is feedback from the public. "Users have pointed out that we need more cancer resources and have requested an online doctor service, allowing them to e-mail queries to a doctor."

The VHI also launched a health site this year specifically for the Irish market, www.vhi.ie. The site contains a range of general health material and includes special features such as "Ask the Nurse", and reader polls on health topics including "How often do you take vitamins", and "What stresses you most?" A company spokeswoman said that in future, information from these polls could be developed into a research resource both for the user and the company.

VHI's editorial material differs from irishhealth.com in that most of it is sourced internationally. This gives the reader access to an extra dimension of information but can also create confusion. For example, the site mentions a chickenpox vaccine not licensed for use in Ireland. While a disclaimer clearly states that the editorial material is sourced internationally, any confusion can be frustrating for a parent worried about the disease.

According to a VHI spokeswoman, the site was recently reviewed by doctors who recommended more Irish-specific content, which is now being added. She added that the company is happy the people using the site are "intelligent and discerning enough to respect the differences between information that is sourced internationally".

"They want to know what's happening and then it is up to them to make a decision. There is a bit of rewriting to be done and we are generating new copy for the site and are planning a long-term localisation programme." How are family doctors responding to Irish people becoming more Internet-savvy? Dr Brian Meade has noticed patients are increasingly using the Internet. He believes the more informed patients are, the better - but nonetheless, he worries.

"My concern with information on the web is that much of it is not professionally vetted. Occasionally it can be a bit of a battle with the patient who believes what they read and often you end up visiting the site yourself to examine its validity," he says.

Recently, a patient of Dr Meade's who suffers from malignant melanoma discovered a treatment via the Internet that is only available in a London clinic. "This creates problems," Dr Meade says. "Although sometimes you echo the patient and wonder why the treatment is not available here."

DR Meade, who practises in Stillorgan, Co Dublin, is also director of IT training at the Irish College of General Practitioners (ICGP). Within the college, the GPIT group is training Irish doctors how to use computers in their practices. Tutors have been appointed to each health board to provide IT classes and about 400 doctors have participated. The GPIT group intends introducing computer training for medical students which will include an Internet component.

The training aims to cut down on the number of paper documents travelling between GPs, hospitals, patients and pharmacies and replace it with e-mailed files. However, Dr Meade sees many problems to be overcome. One concern is the validity of computer notes for GPs who update patient files on screen. "A doctor in the UK has been sued over using computerised notes, because it was alleged he had changed them. The software we use now shows every time the file is updated or changed so that is no longer a concern," he says. Diagnosis via e-mail, which is popular in the US, has never been formally discussed by Irish health workers and Dr Meade believes the Irish medical profession would have medico-legal fears diagnosing a patient exclusively on the basis of an e-mail.

"Even over the phone you get more of an idea of how the patient is feeling, the stress they are putting on certain words, the anxiety in their voice. You cannot replace this interaction between doctor and patient," he says. The task of initiating a programme for transferring information from doctors' surgeries to health boards and hospitals falls to Maire Lawlor, manager of the National Healthlink Project. Security of information in storage and during electronic transfer is a key concern of GPs and patients and all information is encrypted before transfer.

Established in 1995, Healthlink aims to create a communications network for file-exchange between GPs, hospitals and other health agencies, Lawlor explains. Under the system, lab results, death notes and birth notification can be sent to the GP concerned immediately.

"It's not unusual for GPs to have 5,000 patients on their books," Lawlor says, adding the objective is to place Healthlink in every practice - although this has been hampered by the fragmented nature of the Irish healthcare system.

Reducing the paperchase would be welcomed by both doctor and patient but it will require either a unique patient identifier or barcode labels to replace the current nomenclature. This project is currently being worked on by the GMS Payments Board.

The Internet opens up a huge potential resource but, unlike encyclopaedias or medical journals, this resource is not always subjected to stringent publishing standards. GPs, therefore, may wish to take the initiative and recommend an authoritative site to the patient looking for further information.

Screen grabs from the VHI's health site at www.vhi.ie and from irishhealth.com