Patients need to take an active role in their medications

Overheard in the gym:

“Yeah, but I heard that ____ can be dangerous.”

“Oh, they wouldn’t let us buy it if it was.”

Lately, the public’s faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Advances in drug development mean that many of us truly can live better lives through their wise use. But are we adequately guided and protected by a) regulators, b) our clinicians, c) a watchful news media, and d) the pharmaceutical industry to actually realize the promise of all this progress?

Most of us are vaguely aware of the Food and Drug Administration’s and Federal Trade Commission’s efforts to ensure a safe drug supply in this country. And we regularly hear about unethical research and advertising practices of the pharmaceutical industry and the government’s failures to protect us from harm. Really, don’t you think that this steady stream of revelations about false claims, impurities and dangers of various drugs would undermine our confidence?

It seems not, because many of us continue to purchase pills that are not effective in causing weight loss, swallow syrups that promise to cure diabetes, and fiddle with our medication-taking regimens. All the while we assume that the pharmaceutical industry and the government carefully monitor every such substance to make sure nothing harmful is sold to us.

Why do we take such chances?

  • Because many of us take many drugs — prescription and nonprescription. Seven out of ten of us take at least one prescription drug, and 35 percent of American adults regularly use at least one over-the-counter medication. In other words, we think it’s normal.
  • Because the information about drugs that is easily available to us is so often false or misleading. For example, a recent content analysis of direct-to-consumer television advertisements published in the Journal of General Internal Medicine found that about 57 percent of major claims in both prescription and non-prescription drug ads were potentially misleading, while around ten percent were false.
  • Because changes in health care practices direct our clinicians to delegate more decisions about our medication to us. Many people report that their clinicians ask them to choose which drug is right for them while offering little guidance about risks and side effects.
  • Because lack of insurance/under-insurance means that many people are making medication decisions without the advice of a health professional. About 81 million of us are either uninsured or underinsured, constituting a significant financial barrier to receiving regular access to and personal clinical advice about the use of prescription and over-the-counter drugs.

These data point to the need for most of us to take on yet another responsibility for our health care that was previously the domain of our clinician. What does this responsibility look like? What must we do to make sure that we derive the optimal benefit from the drugs we purchase and consume?

  1. We should probably be far more active in talking with our clinician about each drug she prescribes, why to take it, how to take it and when to stop taking it.
  2. We should also probably look beyond the direct-to-consumer advertising and find a reliable source of accurate information about dose, side effects, interactions and precautions for every new drug we take, whether our clinician prescribed it or we picked it off the shelf of the corner pharmacy. This is a chore, especially for those without Internet access and those who lack skills in searching for unbiased information.
  3. Then we have to take the drugs. As directed. And tweak the dose as necessary, checking in with our clinician about its effect.
  4. We also need to keep track of all the drugs we use and how we use them. All the time. Most of us will quit taking a medication when it gives us intolerable side effects or doesn’t seem to work. That is important information for us to monitor and is potentially important for our clinician.

The expectation that a majority of us will start to take these actions is not realistic. Taking an active role in our use of drugs presumes that we place a high value on the scientific assessment of drug safety and efficacy. The extensive vitamin and supplement section of every drugstore, the number of cures “they don’t want you to know about” advertised online and the popularity of alternative medicine approaches all send compelling signals that the public’s attraction to optimistic claims wins over solid evidence. Sadly, it seems unlikely that many of us will ramp up our vigilance with regard to drug consumption any time soon.

We — patients and families — have the most to gain and the most to lose here. The actions outlined above constitute a minimal investment of time to ensure that we gain. Not doing them puts us at risk of losing: not getting the most from the drug, experiencing unnecessary suffering and wasting our money.

I am struck by what it will take to shift a majority of the population’s behavior to take full advantage of the rich potential of available drugs … and this is just one small slice of finding and using health care!

Specific attitudes, practices, norms, expectations and training must change — not only ours but those of every other stakeholder whose interests touch drug development and use. Accurate information must be easily findable and usable. And we will need the encouragement and guidance of our clinicians, pharmacists, health plans, the news media and regulators to ensure that we are able to act on our own behalf to sort through the maze of drugs that might help us realize the benefits they promise.

This is going to take a long-term commitment by all of us.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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