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During the neonatal intensive care period, which involved major surgery, we discussed the parents' involvement with the Internet with them. Their initial information on cystic hygroma and KTW syndrome had become irrelevant, but some of their Internet information on Proteus syndrome was of value, including that from an international Proteus support group. Local experience with unusual neonatal complications of such a rare disorder was limited and we were ourselves searching the Internet for advice. It was decided that it would be best to share information. To save time, it was agreed that the parents could email the doctors directly with data from the Internet. They were made aware of the specialist's time constraints and agreed to be, and indeed were, selective. Some of the information was useful in planning management of their baby's troublesome deep ulcerating haemangiomas. The parents were also able to provide serial documentation of these lesions by emailing scans of appropriate photographs, which they took at home. This reduced the need for clinic visits.

The parents were grateful for the acceptance and value given to their involvement in information gathering. They proved to be useful research assistants. In the process, we gained a better understanding of their emotional state when we realised that their perception of the disorder was coloured by some of the case studies of severely affected children that they had encountered on the Internet.

This exposure of an apparent gap in the doctor's knowledge may alarm both parties and, in view of the potential disruption to doctor-patient relationships, a new approach of trust and teamwork is required.

Patients or their families often have more time to spend surfing the Internet looking for information that is potentially relevant to their health, and as they are often interested in only one clinical condition their search is very focused. Their doctors, while not having the time to devote to an extensive search for current details on every disorder they encounter, have the skill and knowledge to analyse the data and assess their relevance to the particular patient. These factors provide an opportunity for exploiting this readily accessible information in a revised doctor-patient partnership.

In the new age of computer-assisted medical care, information is superabundant and rapidly changing. Rather than being intimidated by information overload, doctors may do well to acknowledge the problem and cooperate with patients in changing the concept of whose responsibility it is to own the information. In some situations patients and their families can perform the tasks of librarian and research assistant, particularly in dealing with rare disorders or unusual management options.

A major problem for both doctor and patient is being able to distinguish good information from bad. Many patients may access medical information that is totally irrelevant to their own clinical situation. Some of these problems have been addressed in general practice,^5,6 with some good electronic guides.⁶ But in relation to rare or unusual clinical conditions, patients may have to search further and often come upon individual reports, frequently written as testimonials. There are also many websites that offer quackery, often for exploitative commercial reasons.⁷

Some simple quality checks to suggest to patients are shown in Box 2.

Medical colleagues may feel threatened by patients who gather information on the Internet and they may attempt to discourage the process. This attitude has the potential to undermine the doctorpatient relationship and drive patients and their families to seek alternative help or self-manage their medical problems. Many people who surf the net use it to retrieve information pertaining to personal health care,⁶ and the reality is that individuals will aggressively seek more information to help them understand and cope with medical conditions diagnosed in them or their families, particularly when they have a rare syndromic condition. By accepting this new trend to patient education via the Internet, a pattern of cooperation and teamwork can be developed with mutual benefit.

Reprints will not be available from the authors.
Correspondence: Patrick J Pemberton, Department of Neonatal Paediatrics, Princess Margaret Hospital, Box D184, Perth WA 6001.
Email: patrick.pembertonAThealth.wa.gov.au

©MJA 1998