Thursday, June 19, 2008

Tips for Surviving a World Filled with (Mis)information: Part II

It’s Friday, 5:15 PM. As the CHADD staff is preparing for the weekend, a call comes in from a reporter seeking comment on an embargoed press release that will be widely disseminated on Monday. How should CHADD respond?

This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.

How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?

These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.

Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.

This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.

It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”

We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.

When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.

The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.

But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.

May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!



Anonymous said...

Great analysis, Clarke. Personally speaking, I think CHADD did a great job of staying on top of this issue.

It seems increasingly difficult to have thoughtful discourse in our society, where opinions are formed on the basis of one headline and one knee-jerk reaction. And there's entirely too much grandstanding "gotcha."

Healthcare issues, in particular, are complex and require a nuanced approach. There is no black-and-white in the real world--only on shock-jock radio shows.

It would help a great deal if medical experts learned to take a more cross-disciplinary approach.

For example, cardiovascular physicians who don't understand brain issues not only risk jumping to the wrong conclusions when it comes to psychotropic medications, they also risk their patient's overall physical and mental health.

They should understand that, for example, the brain needs cholesterol, and their sole goal should not be driving down cholesterol as low as possible. We saw how well "treating by the numbers" worked for poor Mr. Russert.

The physicians and scientists of the Vitamin D council try to educate the dermatologists regarding the dangers of scare-mongering about sunlight. Likewise, maybe the brain scientists need to educate cardiologists on the role that a healthy brain plays in maintaining health throughout the body.

Simply put, this Cartesian approach to healthcare isn't healthy.

Anonymous said...

I'm noticing an increasing trend toward a completely "safe" treatment expectation. Safe as in no risk at all.

The result of this is to make _me_ a bit impatient with the "no acceptable risk" lobby, and tune them out. Of course, that's just as bad as overreacting.