Right, Wrong; Too Much, Too Little; Too Early, Too Late
If Martha Stewart was in public relations she might say, “Information – it’s a good thing.” Information can educate. It can inspire. But, it can confuse. It can even harm.
We’re exposed – sometimes bombarded – by health information everyday. It comes from our healthcare providers, from the media, from consumer groups, from government institutions and advertisements. Shirley Wang wrote in The Wall Street Journal last week, “Too much information about drug safety – disseminated through media, online alerts from consumer watchdog groups and even by the Food and Drug Administration itself – might overwhelm patients and raise undue alarm, some medical professionals caution." Indeed, also reported in this story was a survey of 300 medical professionals released last March by Pfizer that found nearly all (89 percent) were at least “somewhat concerned that patients might stop their medications if potentially negative safety information was released to the public too early."
The clutter and confusion is an issue not only for patients and caregivers but for physicians, too. The database of clinical guidelines (those standards of care developed by a wide array of medical societies) maintained by the American Medical Association contains over 2,200 entries. Some were not subjected to peer review and some contradict others outright. Dr. Darshak Sanghavi, a pediatric cardiologist at the University of Massachusetts Medical School, wrote in The New York Times recently that in the past year “the American Academy of Pediatrics abruptly reversed its recommendation that healthy infants avoid peanuts and other potential food allergens, without citing any new data. Weeks after the American Heart Association widely publicized the need to perform cardiac testing in children treated with drugs for attention problems, the academy issued a contradictory guideline discouraging such testing.”
These guidelines carry weight in determining if a drug, device or procedure will be reimbursed by insurance, and are supposed to be developed using hard clinical data – so called evidence-based medicine. But here, too, lie a bevy of contradictions. For example, Stephanie Saul wrote in The New York Times last week about the CyberKnife, an FDA approved treatment for the treatment of a variety of tumors made by Accuray. In prostate cancer, the key advantage is that treatments take five days instead of eight weeks for conventional cancer radiation. “As it turns out, Medicare pays for the treatments in 33 states — but not in 17 others. “You can live on one side of the street and get a procedure, but on the other side of the street you can’t,” said Dr. Steven D. Pearson, president of the Institute for Clinical and Economic Review.”
Positive steps have been taken, to be sure, but we still need to work to ensure that information is of higher quality, delivered at the right time and conveyed in language appropriate to the audience.
If Martha Stewart was in public relations she might say, “Information – it’s a good thing.” Information can educate. It can inspire. But, it can confuse. It can even harm.
We’re exposed – sometimes bombarded – by health information everyday. It comes from our healthcare providers, from the media, from consumer groups, from government institutions and advertisements. Shirley Wang wrote in The Wall Street Journal last week, “Too much information about drug safety – disseminated through media, online alerts from consumer watchdog groups and even by the Food and Drug Administration itself – might overwhelm patients and raise undue alarm, some medical professionals caution." Indeed, also reported in this story was a survey of 300 medical professionals released last March by Pfizer that found nearly all (89 percent) were at least “somewhat concerned that patients might stop their medications if potentially negative safety information was released to the public too early."
The clutter and confusion is an issue not only for patients and caregivers but for physicians, too. The database of clinical guidelines (those standards of care developed by a wide array of medical societies) maintained by the American Medical Association contains over 2,200 entries. Some were not subjected to peer review and some contradict others outright. Dr. Darshak Sanghavi, a pediatric cardiologist at the University of Massachusetts Medical School, wrote in The New York Times recently that in the past year “the American Academy of Pediatrics abruptly reversed its recommendation that healthy infants avoid peanuts and other potential food allergens, without citing any new data. Weeks after the American Heart Association widely publicized the need to perform cardiac testing in children treated with drugs for attention problems, the academy issued a contradictory guideline discouraging such testing.”
These guidelines carry weight in determining if a drug, device or procedure will be reimbursed by insurance, and are supposed to be developed using hard clinical data – so called evidence-based medicine. But here, too, lie a bevy of contradictions. For example, Stephanie Saul wrote in The New York Times last week about the CyberKnife, an FDA approved treatment for the treatment of a variety of tumors made by Accuray. In prostate cancer, the key advantage is that treatments take five days instead of eight weeks for conventional cancer radiation. “As it turns out, Medicare pays for the treatments in 33 states — but not in 17 others. “You can live on one side of the street and get a procedure, but on the other side of the street you can’t,” said Dr. Steven D. Pearson, president of the Institute for Clinical and Economic Review.”
Where does this leave us? Here are a few thoughts:
For consumers: Trust, but verify. We’re told to rely on sources of information that we trust. But be careful. Trust is easily misplaced – just ask those who invested with Bernard Madoff. Look for information that lists its authors. Look for references. Additional comfort can be gained if the information is attached to a major medical institution, or a government agency like the NIH or CDC.
For health information providers: Release information when it’s ready, not when it’s half-baked. Many studies and interim results are made public too early. Clearly, if there’s a serious potential adverse event or public health issue, it’s important to err on the side of safety. But, in other cases, try less for a change. Not everything is news, not everything needs an announcement.
For healthcare decision-makers: Set expectations in advance for what information is needed to render judgment, while leaving room for some flexibility in a dynamic field. We need a clearer understanding of the thresholds of acceptability, when enough information is enough and transparency in the review process.
For health information providers: Release information when it’s ready, not when it’s half-baked. Many studies and interim results are made public too early. Clearly, if there’s a serious potential adverse event or public health issue, it’s important to err on the side of safety. But, in other cases, try less for a change. Not everything is news, not everything needs an announcement.
For healthcare decision-makers: Set expectations in advance for what information is needed to render judgment, while leaving room for some flexibility in a dynamic field. We need a clearer understanding of the thresholds of acceptability, when enough information is enough and transparency in the review process.
Positive steps have been taken, to be sure, but we still need to work to ensure that information is of higher quality, delivered at the right time and conveyed in language appropriate to the audience.
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