Uncertainty and Comparative Effectiveness Research

By June 7, 2015June 14th, 2015Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader
Last week’s post  began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us – family, friends, health care professionals. But isn’t health science-based?  Doesn’t research inform that science? Scientists knows that knowledge is never complete and that research can do no more than produce estimates of what we think is happening. Science, is in part, about odds and not facts. A particular medicine to be effective in specific circumstances for specific populations.  Unlike comparative shopping for a car or a toaster where I can go to Consumer Reports, health care is not so easy. There are so many medications to take for Multiple Sclerosis or high blood pressure.  Which should I take? This research is called comparative effectiveness research.

“Comparative effectiveness research (CER) is the generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. The purpose of CER is to assist consumers, clinicians, purchasers, and policy makers to make informed decisions that will improve health care at both the individual and population levels.” The key words in this definition are “generation and synthesis of evidence” (which implies both original research and systematic reviews), “alternative methods” (which implies making head to head comparisons in study populations typical of daily practice), and “to make informed decisions” (which implies a focus on data that helps to decide between alternatives). 
What does this mean for you and me? Well, first you need to know what’s important to you.  What kind of life do you want to live.  What are the must haves and what are the can do withouts? When my neurologist and I were deciding what medications I should take for my MS, I knew that I didn’t want to take anything that would make me depressed, interfere with my sleep, or give me brain fog.  My strength is my positive attitude, my sleep is already iffy enough, and I need my wits to work and enjoy life. When I struggle with neuropathy (shooting pains down my arms and legs) I don’t take Neurontin or pain medicine beyond Tylenol and Ibuprofen. I’ve found that acupuncture and massage help some. Otherwise I manage.
So research informs decisions in the context of what’s important to you.  And we are all different. An almost unlimited array of possible decisions based on the same science. We’ve just touched the tip of the iceberg here.  More to come next week.

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