Schwitzer health news blog

Patient advocacy group overload

The Wall Street Journal (subscription required) reports:

"At the national Brain Tumor Foundation, executive director Rob Tufel has a standard reply for well-meaning families and patients who want to set up a patient-advocacy group: 'Please don't start another organization.'

There are 141 patient-advocacy groups that cover brain tumors, according to Mr. Tufel, while 43,000 people in the U.S. are diagnosed every year with primary brain tumors, benign or malignant. That's roughly one group for every 305 new patients. 'It just doesn't make sense from the point of view of funding, or from the point of view of patients and families,' who must sort through the numerous organizations and Web sites for information, Mr. Tufel says. 'Competition is good because it keeps us on our toes, but at some point ... it becomes ineffective.' ...

Many of these groups wind up competing with each other for the same donors and the same researchers to sit on their boards. There is the chance that groups will duplicate one another's efforts, wasting resources by offering the same programming or services. And busy legislators find themselves uncertain about what the greatest need is for patients because each group emphasizes different issues or aspects of the disease."

The WSJ reports that many overlapping advocacy groups are now investigating whether it is possible to set a common agenda and speak with a unified voice.

One oversight in the story: there is no mention of the amount of industry support that many patient advocacy groups receive. Such industry support may lead to biased, imbalanced information being disseminated to group members, and advocacy on behalf of industry interests instead of just patient interests. It's an issue worthy of much closer scrutiny by those who think of joining, or contributing financially to, such groups.

For a good story on this topic, see this Washington Post piece.

Posted by schwitz at October 11, 2006 07:33 AM | TrackBack