The explosion of online health information has been a boon for consumers, but questions of ethics and accuracy have been raised by advocacy groups.
Is the major sponsor influencing the information being put forth? How do I know if this advice is accurate? Where is the site’s money coming from and what exactly are the sponsors getting for their money?
It’s these type of questions and growing consumer concerns that have led to the formation of the Internet Healthcare Coalition, which is drafting an ethical code for online health sites.
The coalition of pharmaceutical companies, doctors, patients, professors and just about anyone else with a stake in the health care industry evolved from a meeting held by the U.S. Food and Drug Administration in 1996 to get input on how pharmaceutical companies should be regulated on the Internet. After constructive discussions among various groups, John Mack, one of the participants, decided to take the idea a step further.
“I came away thinking that these discussions should continue after the meeting,” says Mack, president of the coalition. “I thought it should be widened to include not just the pharmaceutical industry, but other businesses, and patients as well. Everyone that is creating health information on the Web should be aware of the issues and should be included in the discussions.”
The volunteer, nonprofit group was formed shortly thereafter. The coalition’s focus is on establishing a code of ethics for online information providers. It was called upon after several concerns were raised in the media about the ethics of the major health care sites on the Web.
“To build consensus, we chose a group of 60 people that represented the broadest spectrum: we had ethicists from academic institutions, people from the dot-coms and the for-profits, consumer health groups, government health agencies, health professional organizations and pharmaceutical companies,” says Mack. “We hammered out the guidelines for a draft copy and sought public input.”
Once the official code is adopted, the coalition will take on an educational role.
“The coalition does not want to own the code,” says Mack. “We are giving this code to the rest of the community. We are trying to bring together a number of organizations that will set up the mechanism for maintaining the code. The coalition will help end-users and creators of information to understand the principles in the code and how to apply them. Most ethical mistakes are made because of a lack of education and awareness rather than intent.”
Enforcement of the code is still being debated. How it will be enforced, who will enforce it and what the penalties will be are under debate. Once completed, the ethics code will be a sort of industry stamp of approval — consumers can take the information knowing that the site has agreed to specific terms of ethics.
For more information about the Internet Healthcare Coalition, or to view the ethics initiative, go to www.ihealthcoalition.org.
Todd Shryock ([email protected]) is SBN’s special reports editor.