Last week I heard uber marketer Seth Godin speak about the power of fear. Fear is one of the strongest human emotions, based in the core of our brain–the “lizard brain” that evolved prior to our higher order thinking skills. Fear served us well throughout most of ancient history (stay away from the tiger!)–but it’s not always productive in modern day society.
Consumer fears about health information technology (health IT) privacy are a case in point. Surveys show that more than half of consumers voice fears which are, (in my opinion) appropriate, to an extent: risks such as discrimination are real, and public concerns should hold policymakers, vendors, and providers to the highest standard of privacy protection.
The real problem is fear mongering. Debroah Peel, founder of Patient Privacy Rights, has put herself and her organization on the map with sensationalism. As she said in a KTVU report earlier this month: “Anything that’s in there, any information that’s in there, can and will be used against you in the future. It’s very important to know that in the electronic health world…” and, “This is a nightmare. It’s nothing we’ve ever seen before in medicine.”
Extremist statements like this are usually misleading and often just plain wrong.. But a response that focuses on the logical and rational alone doesn’t cut it. In March Peel wrote an opinion for the Wall Street Journal online called “Our Medical Records Aren’t Secure.”
It got 179 comments. A measured rebuttal by Mary Grealy, President of the Healthcare Leadership Council, got only 4.
On this blog, Matthew Holt has blasted Peel, calling her illogical and a “nutjob.” Peel and those who make similar arguments against health IT are not just “nutty,” but dangerous because they have found a way to tap deep into the human psyche. Even highly informed health IT professionals I know have been taken in by her siren song.
The struggle to control public perception will grow more intense as health IT becomes more mainstream via implementation of HITECH. It’s important to get the infrastructure, the policy, and the MESSAGING right if the public is going to participate.
Fortunately those of us who believe in the immense value of health IT can use emotion to sway people, too. If it’s fear you’re after, we hardly lack material:
– How about being given a drug you are dangerously allergic to?
– How about receiving a radical misdiagnosis—and the treatment to match?
– How about enduring prolonged, unnecessary pain?
– What abut the cures not found, or contagions not contained?
– And how do you feel about you or your loved one dying because of an avoidable medical error… as 98,000 people do in this country every year?
But we need not limit ourselves to fear, the lowest common denominator. We can also counter unproductive exaggeration with more holistic, moving stories. The importance of real patient stories was underscored by artist Regina Holliday and doctor Ted Eytan at a Health 2.0 meeting last week in Washington DC. As Holliday said, we need to “put a face” on healthcare, which she does through her paintings.
While the faces of plenty of patients in the broken health system of today reflect fear, pain, and missed opportunities, there are also more positive stories, like that of e-Patient Dave, who worked with information and a team of caregivers to save his own life. You can read his story in his new book, Laugh, Sing, and Eat Like a Pig.
Stories and the emotions they tap into are powerful tools—they are necessary to help the general public and even those who work in the healthcare system make sense of it and envision something better. Let’s harness their power to bring about positive change rather than freezing the status quo.
Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com) She specializes in strategy, policy and implementation of health IT–with a passionate focus on the consumer. Fol
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Last night I watched the news and it was just as depressing as usual. One of the larger grocery store chains here in the south in closing many of it’s stores. Now more people will be out of jobs and benefits with more families wondering what they are going to do. More than ever people are relying on the government for help but with our country already deep in debt and many programs being cut it just isn’t always enough. It upsets me when I think of how many families are out there struggling for help.
Excellent, well-thought out post. Kudos to Lygeia!
I share positive health IT examples as part of my job with Practice Fusion (like our new video with a nurse practitioner making house calls thanks to health IT) but the negative, fear-mongering stories seem to be gaining ground. I’m hoping for more grassroots support as patients start to see health IT benefits first-hand.
“Use Emotion to Drive Adoption”
I don’t think so. Fear is an emotion too. I’d rather use reason and sound logical arguments to drive anything, HIT adoption included.
“It’s important to get the infrastructure, the policy, and the MESSAGING right if the public is going to participate.”
It is also important to get the right legislation in place and, personally, I don’t want to be MESSAGED. There are facts and those facts need to be considered.
All those emotional patient stories are as anecdotal as the lost laptops loaded with patient information stories.
While it is not debatable, in my opinion, that patients have full rights to see, download, transfer, copy and do whatever they want with their medical records, it is very debatable whether the keepers of said records have a right to sell and otherwise disseminate patient records to the highest bidder.
I don’t hear any vocal support from anybody for barring selling of medical records, identified or not. Why is that?
Perhaps Dr. Peel is on the extreme side of things, but I can assure you that safety breaches are rampant and selling of medical data is equally rampant. Both will be amplified by orders of magnitude as HIT gains widespread adoption.
Feel good/bad stories about patients who obtained/were barred from obtaining medical records are not really what this is about. It is about the unintended (or possibly very intended) consequences of having medical records flowing out of a physician office, through a host of intermediaries, each building a business model based on exploiting the value of aggregated data. Value to whom?
It is not only a question of opting in or opting out. It is a question of ownership. The data contained in medical records is the property of the patient, not the EHR vendor, HIE, clearinghouse, ISP, or any other aggregator. Unauthorized sale of what you don’t own, and appropriation of the proceeds therefrom, is plain theft.
I do believe HIT has enormous benefits, but it also has potential for abuse. If we are truly interested in HIT adoption, we must legislate what needs to be legislated to minimize abusive and predatory behavior. Messaging will take care of itself. The “public” is much smarter than most people give it credit for.
You are so right about “fear”. People do alot of things out of fear like worry about their healthcare information being stolen, buying “health insurance” because the fear of financial loss. I agree alot of the decisions we make is emotional based.
Great points. I read an article several years ago about how sometimes the quickest way to promote change is to incite fear, but that whatever change you ultimately get using that method is rarely sustained. Sustained change is almost always a result of something positive. Think quitting smoking: how many people quit smoking immediately after a heart attack – only to go back when the memory of the fear has subsided? On the other hand, how likely would it be for that same person to quit – for good – if his/her adult children asked them to quit because they didn’t want to expose grandchildren to second hand smoke, and therefore wouldn’t come around as often if they were smoking? Don’t have a scientific study to back up with an actual percent, but I’ve experienced this in my own family. I think provider AND consumer adoption of e-tools will continue to accelerate – and be sustained – as the value of doing so is realized. Hearing the real-life stories and messages of how HIT is changing things for the better is an important part of realizing that value.
Thanks, Lygeia. Without knowing about Seth’s pitch on fear, I commented recently on Paul Levy’s blog that appealing to the reptilian brain (via fear, anger) was good as a political tactic to activate response, e.g. getting voters to vote, but it’s not so good at thinking things out.
I don’t know what to say about Deborah Peel. Does she really believe that stuff? Does she really, honestly believe that every single thing in my EMR will be used against me? My creatinine level on March 13, 2007? The error in an x-ray report that said I’m a 53 year old woman? The cyst I had once?
Does she really think, as she said, that all this will be used against me? Or is she exaggerating for effect, a form of lying? Or is she a sloppy thinker, ranting nonetheless about her ill-thought-out conclusions? Or is she just plain ignorant?
I don’t know. But I agree that it’s misguided to reject all the benefits information science can bring to medicine. It’s like saying “Don’t let those bastards use scalpels – somebody could HURT you with one.”
I was just at a small pharma conference where we discussed that those companies are required to present a balanced view – the famous lists of side effects in drug commercials. That door should swing both ways. When Dr. Peel rails (half-informed) against these risks, she ought to be required to present a balanced view: “Warning: without these records, providers you meet in the future will know less about you. And THAT should scare you.”
That’s what happened to Regina Holliday’s husband Fred: he lay in pain for hours while she tried to extract his record from the previous hospital, on paper, at 73 cents a page. I wonder what Peel thinks about Fred’s pain. That was real – not a “maybe” fear.
Thanks, Ratings Guy. I agree that positive messages re health IT are useless or even pernicious if they are unsubstantiated. The point is not just to focus on the positive rather than the negative, but to recognize that communication and messaging play an incredibly powerful role. If we build the best health IT system in the world and people are afraid to participate, they won’t. And given that greater consumer demand would help a lot to get health IT more broadly deployed, we want to make sure the public is getting an accurate picture of its benefits and risks–but we don’t want to turn people away by overemphasizing the potential downsides.
Yes, BobbyG I am always careful in restaurants and grocery stores in case the Administration is watching my diet. 😉
Did you know that Certified EHRs will have to be able to calculate BMI [703*(wt/ht^2)], and that this means that the federal government will be telling you what you can eat (should you run afoul of Mrs. Obama’s “obesity index”)?
😉
That’s a fav these days of the Tinfoil Hat battalion.
I agree that the carrot is so much more engaging than the stick. Yet when Hospitals and Health Networks and CHIME name the “100 Most Wired Hospitals”, perhaps they should have some responsibiity to see whether their effort toward awarding a carrot was misguided and unsubstantiated, by checking the hospitals outcomes. So we do need to be careful how we package our optimism. The fact is that less than 40% of those hospitals named “100 Most Wired” performed in the top quartile for performance on measures of quality, patient safety, outcomes (30-day re-admissions and mortality), patient experience, efficiency and affordability! Read: what good are the good messages if they are wrong? HITECH could be better served by measuring the results of technology as a causal effect of the technology itself. HHN magazine and CHIME failed to do that and CHIME has endorsed these hospitals, yet the outcomes have yet to present as positive. Worse is the finding that 10% of those on the list rank above 2,000 (that’s bad) on these same and most fundamental measures of quality, safety and efficiency…something these systems are supposed to protect. I fear, until the best promoters of HITECH get it right, lot’s of other people have things to fear as well.
Until then, I fear the obvious.
The Ratings Guy