Patient Power!

THE Internet has given rise to an empowered and better-informed citizenry and never more so is this apparent as in a subject as personal and affecting as healthcare.

By all accounts, the proliferation of medical Web sites has enhanced the patient-doctor relationship. The ill and their families are more prepared, and have greater understanding of the issues involved, while the medical community can reach out in ways never before possible.

"Visits are now focussed on the real concerns and specific questions about their condition or symptoms as a result of a pre-visit done in the privacy of their home. When patients know what to ask, the results are often more satisfying to all," says pediatrician Dr Paula Elbirt who operates her namesake Web site drpaula.com.

Chief operating officer at drkoop.com Dennis Upah agrees. He says that consumers are taking charge and control of their interactions with physicians. "Weıve gone from a period of physician talking and the patient listening to a true dialog as a result of a more empowered and educated consumer," he adds.

Upah points out that this also created better doctors because an enlightened patient is one that brings information to the physicians. "Good physicians are never threatened by that. In fact, they undoubtedly look up the information themselves immediately after the patient leaves the office," he said.

But how do you tell the bonafide from the online quacks? Internet users often ignore warnings on such sites that information given should be validated by a physician.

Is There a Quack in The Mouse?

Dr Paula in an e-mail response says that medical information on the Web is subject to the same potential errors, and may deliberately mislead, as medical information obtained elsewhere.

"Claims made that seem extraordinary are not likely to be valid but at least looking for peer-reviewed literature supporting the claims are likely to result in getting valuable info," she points out.

She advises consumers to check credentials of all professionals by searching for their history at major medical associations. "Be wary of degrees that are not licensed and always check with your own physician before trying any treatment recommended on the Net," she reiterates.

Upah, also in an email, proposes that consumers deal with trusted brands and sources of content that clearly disclose both the author and any financial relationship that may have tainted the content itself. "This information should be clearly posted directly on the article and the site itself," he says.

Malaysian physician and Web site operator Dr Muruga Vadivale says that consumers can verify information by looking for the Hon Code or Medinex logo or similar certified sites. "There is no guarantee, but chances that the information is authentic are better."

Nonetheless, quack sites are quite difficult to spot, according to consultant physician and haematologist Dr Alan Teh. He recommends consumers check out Quackwatch or Federal Trade Commission for recent postings. Due to the sheer volume of misinformation on the Net, consumers must develop a critical mind and the ability to filter out unreliable information, Dr Teh adds.

Most medical professionals agree that the Net is a proven resource to families with ailments, chronic diseases and life-threatening illnesses. Public discussion boards and advocate groups have created useful and supportive online communities.

At drkoop.com, there are 130 chat support groups peer-led by a person who either has the condition or a specific interest in the condition. "Interest and involvement in those communities continue to grow."

Adds Dr Paula: "The suggestions shared between families dealing with similar illnesses can be invaluable and this information would not have been easily obtained without the far reaching arms of the Web."

Medical practitioners too have developed a healthy camaraderie online. Dr Teh set up a mailing list for doctors in 1996. Within a year, it grew to a doctors-only bulletin board system or Dobbs providing doctors a forum to discuss sensitive issues privy to the group. To date, 700 Malaysian doctors have registered with Dobbs.

"Solo practice can be quite a lonely experience. Dobbs has enabled doctors to reach out to fellow colleagues no matter how remotely situated, as long as they have Internet access," he confides.

Doctor Dotcoms

Upah adds that drkoop.com recently announced a Physician "Dashboard," which provides physicians with browser-based access to real-time patient results, clinical databases, eligibility verifications and much more that will be available to physicians in the third quarter of this year.

"Itıs extremely expensive to set up a Web site, and unless a doctor has the business acumen to raise millions of dollars and the willingness to subject themselves to a level of celebrity scrutiny like theyıve never been subjected to before, they may be better-off participating in one of the initiatives already set up," he adds.

drkoop.com was set up by the former US Surgeon General, Dr C. Everett Koop and attracted a huge following based on branding alone. Says Upah:

"It certainly helps to have a recognizable brand to exist in a very cluttered environment."

Yet not every doctor needs to have star status to start a Web site. Dr Paula believes that doctors can also grow their credibility if they start a site for their own practice first.

"Invite your patients to ask the doctor a question and post the answers in an open forum. The availability of this alone will attract a crowd. If you are compassionate and competent, your site will flourish despite not having a superstar name," she says.

Dr Paula also advises doctors operating Web sites to be creative and try to avoid advertising as a revenue source.

The pediatrician, who is on the staff of three prestigious New York Hospitals, set up the site because she felt frustrated at not being able to share and teach what she does to a larger number of people. "I love my day-to-day practice but the Web has allowed me to reach out and touch a lot of Osomeonesı. The end of the road is not visible and I intend to keep it that way—good outcomes come from chasing dreams."

Similarly Dr Vadivale designed his own homepage five years ago just to see whether he could do it, and later as a means to access his favorite Web sites from anywhere.

"That all dramatically changed after the enterovirus outbreak in Sarawak in 1997. Children were dying and the public and medical community were looking for answers. I researched the information and posted it online. The response was very encouraging," he recalls. His early success prompted the Malaysian Medical Association to invite him to write a Cybermed column for the Malaysian Medical Newsletter on a regular basis. When Malaysia was hit by the regional environmental crisis, labelled with the politically-friendly term Haze, Dr Vadivale was asked by his online following to do something similar. "This time the reaction was global," he adds.

First Do No Harm Online

Even as medical Web sites continue to multiply online, the long arm of the law is rapidly gaining on them.

The Internet Healthcare Coalition hosted a health summit last month in Washington DC to forge a set of commonly accepted principles and international guidelines for ethically administration of healthcare on the web.

"We at drkoop.com believe that legislation is needed to make it illegal to share medical information without userıs consent. Self-regulation is also best. That is why we founded the e-Health Ethics Initiative to develop voluntary standards for minimum content as it relates to privacy, advertising and content on e-health sites," says Upah. A key concern online is easy access to drugs even though prescription practices and legislation differ from country-to-country.

Naturally drugs under scheduled acts or classified as poisons should not be made available on the Net. Proper enforcement and hefty penalties are effective deterrents but a verification system online is necessary before drugs are prescribed online, says Dr Vadivale.

Dr Paula advises against buying online drugs, especially generic medications, unless it is a known source. "Medications have many side effects and the quality of generic ones are suspicious. Only by giving a thorough history can someone safely prescribe medication. See a physician first and once prescribed, ask about using an online source to order it to save money or for convenience," she says.

Though the Net is empowering those in need of medical care, Dr Colin Q T Lee, a Malaysian physician in Toronto, Canada says that empowerment can sometimes be a hindrance. The net-savvy tend to have less faith in the diagnosis or the prescriptions, he says.

But Lee concedes that the Internet has helped patients and physicians keep up with the vast amounts of new medical information available. "When patients come to me with information they have downloaded from the Net that I am unaware of, I make it a point to note the URL and verify the information."

However, at the end of the day, Dr Lee who has worked in India and Africa, says nothing can replace the face-to-face relationship a physician has with his patients. "I insist patients return to me for any follow-up. A real-life doctor would be in a better position to judge whether a patient is better or worse from his return visit and prescribe accordingly," he says. ends.

By Anita Devasahayam

Published in CNET Asia, March 24, 2000