CONSUMER HEALTH INFORMATION: PATIENT ENGAGEMENT AND DEAD CATS

By Jessie Gruman

April 2, 2014

Congressman Henry Waxman (D-CA) in a recent op-ed: “When you have the ability to get more and more data the natural inclination is to get as much as possible.”

Columnist Gail Collins demurs: “Those of us who have seen the show ‘Hoarders’ know that more is not always better and that ‘as much as possible’ is sometimes covering up a pile of dead cats.” (New York Times, June 8, 2013)

Have you ever felt that claims about the effects of our access to new and more health information overshoot the mark? For example, you may be searching for help in understanding some ambiguous findings from diagnostic tests. Perhaps you think you are having troubling side effects from your new medication but then it may just be a reaction to something you ate last night. You may be hunting high and low for some definitive information about whether bunion surgery is worthwhile for your 80-year-old mom.

Given the sheer volume of information online, you should be able to find robust information about each of these issues that could transform the way you care for yourself. And if you believe some of the claims of those who see great promise in online consumer health information, you will find that information easily, you will use it and the result will be better quality care and better outcomes at a lower cost.

But really, how are you going to know where it is, whether you have found the right stuff and what it means for you? Is it worth investing energy in it all when chances are that it might just be cover for a pile of dead cats?

I am all for efforts to ensure that each one of us is as fully informed about our health and health care as possible. I admire the careful efforts to develop precise decision support tools that can help us make good choices about screening and treatment. I see promise in the development of the Blue Button for Electronic Health Records that will give patients and caregivers access to personally relevant information. I appreciate the website and app developers who are slicing and dicing information so that if we can figure out where the carefully designed, uniquely relevant caches of information are located, we can retrieve and use them.

For all this, however, I am wary of the rhetorically persuasive (to many) claims that our — mine, my mom’s, your teenager’s, and all the people out there in your neighborhood – access to health information will be the key that triumphantly unlocks the cost/quality/overuse problems that bedevil our health care today. Given the still-impressive number of people who do not go online at all — especially those who are poor and less educated — and the rudimentary search skills of many of those who do go online, much of this rhetoric is premature and overblown. It says to us: “Once you have access to the right information, you will make excellent decisions about your health and care — and the quality of the care you choose, the use of your precious health care dollars and even your health outcomes are up to you.”

Yes, some of us will fare a little better if we have access to relevant health information when we need it. While the cultural norms for seeking out and using health information are shifting, there is only minimal evidence that actually finding and using information — even through a patient portal — has improved the way in which we care for ourselves and our families, enhanced the quality of the care we receive, and reduced its price or cost.

More health information is not necessarily better and the challenge of finding what we need leads us sometimes to mistake a pile of dead cats for good guidance toward effective actions that may help us live long and well. Our daily efforts to care for ourselves and our families, our occasional interactions with our clinicians and our wise use of the tools of medicine — tests, drugs, devices when needed — are determined by a wild, ever-changing array of personal, economic, geographic, cultural and institutional factors, of which our ability to find and use accurate health information is only one.

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.