information management

Doctors in the US are adjusting painfully to patients who supplement their consultations with information and chatter on the Internet, says Howard Berliner

At a seminar on managed care in the US earlier this year, the president of a large health maintenance organisation reported that the most serious complaint he received from doctors in the plan (after low capitation fees, of course) was that too many patients were showing up, print-outs in hand, and demanding particular therapies and drugs that they had learned about on the Internet.

He said the doctors were frustrated by their patients not seeming to trust them, and were not comfortable with how much the patients knew about their conditions.

The Internet is changing the way people learn about healthcare issues and act on them. The most important factor in patients' use of the Internet for health information is their lack of trust in doctors and the US medical care system that has come with the growth of managed care.

An increasing number of people believe that their doctor or their managed care company withholds therapeutic and treatment option information from them, and that therefore they must have an alternative source of intelligence to get the best from the healthcare system. This is the most important qualitative change in the way Americans feel about their healthcare, and the Internet makes getting that intelligence easier.

Their belief has been fostered by pharmaceutical firms and medical supply companies, which need the patient to request their doctors to prescribe specific products.

The notion that managed care plans are trying to keep costs down by denying necessary services or expensive drugs - or, especially, denying experimental treatment - plays into a general cynicism and lack of trust in the medical profession.

A large number of the Internet health sites are those established by the traditional voluntary health agencies and organisations, which are just adapting their old-style health education to the web. The remainder, however, are those offering new therapies, new drugs, and new approaches to health problems.

It is this group that is viewed as problematic by government and the traditional health agencies since there is no way to prevent people from being given bad or harmful advice.

Much of the action on the Internet is not at the websites, but rather in the chat groups and user groups. It is in these settings that many people look for others with similar problems and hope to find out about new therapies and approaches. Providers may choose to advertise their wares or their therapies through these groups, and participants may have no way of knowing that the person they are 'chatting' with is actually a provider of a service or the agent of one. The lack of control over the information spread on the Internet has led a number of doctors' groups to try to demand standards for dissemination. Some healthcare sites have been given a 'seal of approval', although this does not seem to have limited the growth in non-approved sites.

The Internet is also increasingly being used by doctors to transmit information and by health systems and hospitals to recruit business. One of the most popular of this ilk is the e-mail 'magazine' that people can subscribe to free from the Mayo Clinic. This newsletter and a similar one from the Columbia-HCA hospital chain offer people information on health problems as well as lists of referral doctors with whom they are affiliated.

As the Internet grows in popularity there will probably be more of these educational newsletters and advertisements.

Doctors are concerned about patients getting incorrect information. At the same time, doctors are not yet willing to deal with an activated and well-informed patient, particularly one who may have information that the doctor does not.

Patients all too readily believe that doctors don't talk to them or listen to them or want to help them because the health plan does not want to spend money or the doctor doesn't want to give the time. There should be a way for doctors to learn to talk with their patients and explore what patients have learned through other sources.

In past times, motivated patients or their families or friends could go to a library and look up options and try to learn more about their conditions. Yet this was not done out of a lack of trust in the doctor so much as for the security of knowing that they understood what was happening to them or their loved ones.

Today, patients are trying to learn more about their conditions because they do not believe that their health provider will be honest or candid. The Internet information flow can run ahead of people's capacity for trust in their healers.