Health Information Exchanges: Patients Must Be Convinced - InformationWeek

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Government // Leadership
09:55 AM
Paul Cerrato
Paul Cerrato
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Health Information Exchanges: Patients Must Be Convinced

HIEs need more than consistent standards and cooperative healthcare providers. Patients must get on board--and the right kind of PR can win them over.

While health information exchanges (HIEs) have the potential to save Americans millions of healthcare dollars, getting these patient data-sharing services up and running has become a tangled web of regulations, conflicting IT standards, and provider resistance.

They also face a significant challenge when it comes to getting patient buy-in. The College of Healthcare Information Management Executives' guide to HIEs outlines two approaches that providers can use to obtain patient consent, namely opt in or opt out. Regardless of which approach your organization uses, it needs to be sensitive to the public's fears.

As I mentioned in my last column, the public is afraid that their medical data won't be safe. And given the number of data breaches in the news recently, you can certainly understand their concerns.

[ Legally, electronic health records are double-edged swords: They protect clinicians from malpractice litigation but also put them at greater risk. See Will Your EHR Land You In Court? ]

But those breaches tell only part of the story. And the rest needs to be told if the health IT community ever hopes to convince people to let HIEs use their personal data.

The federal government spends a great deal of money in professional journals hoping to convince health professionals of health IT's value. It's time to direct some of that cash at the general public. A PR campaign aimed at consumers will likely ease their security concerns, but only if it's deftly handled.

The Office of the National Coordinator for Health IT, for instance, could run ads in People, Self, Parade, and similar consumer magazines, or on healthcare websites like,, or, talking up how digitizing a person's medical information would speed medical treatment and help protect a patient from harm by maintaining details on medications, allergies, and medical issues.

To be effective, the campaign can't just discuss these issues in the abstract. It would have to counterbalance all the scary stories about identity theft and data breaches with emotionally moving success stories about real patients who benefited from health IT and HIEs.

Clinical thought leaders and health IT executives tend to stick to the facts, offering a dispassionate, statistics-filled defense of HIT. But the public is never going to be won over with statistics alone.

All you have to do is look at the debates in the consumer press about the latest health scare to appreciate the fact that people respond to narratives more than to hardcore evidence. They're far more likely to be swayed by a heart-wrenching story of a child who developed autism after being vaccinated against measles, for instance, than by the mountains of research data that have failed to establish a cause-and-effect relationship between autism and vaccines.

With that in mind, health IT leaders have to think in terms of what Zarchary Meisel, MD, and Jason Kalawish, MD, from the University of Pennsylvania call counternarratives.

Here's one such counternarrative: "During John Martin's last business trip, he found himself in an ER 2,000 miles from home, too disoriented to even provide his medical history, let alone remember that he's allergic to penicillin. Fortunately, the doctor on call was able to access all that information because his records were available from the National Health Information Network."

Another one worth considering: "Mrs Diaz recently had her identity stolen and had to spend countless hours coping with all the legal and financial complications. It turns out the thief gained access to her confidential information by stealing a patient chart from a file cabinet in her doctor's office while his staff wasn't paying attention. This situation could have been prevented had all the doctor's records been digitized."

Granted, IT professionals and clinicians shy away from such anecdotes because by themselves they prove nothing--and many thought leaders feel they're a dishonest means of persuasion. But when you line up this type of story alongside solid data, there's really nothing dishonest about it.

When are emerging technologies ready for clinical use? In the new issue of InformationWeek Healthcare, find out how three promising innovations--personalized medicine, clinical analytics, and natural language processing--show the trade-offs. Download the issue now. (Free registration required.)

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User Rank: Apprentice
12/8/2011 | 3:27:21 PM
re: Health Information Exchanges: Patients Must Be Convinced
One of the comments in reaction to my column on PR for HIEs states: "Just look at your own positioning of the issue - consumers are afraid.....they don't understand....we just need more PR."

That's really not my position. As I've mentioned in earlier columns,

I have a sense of guarded optimism about what health IT can do for healthcare, and think it has a lot of potential. Whether that potential turns into better patient care and cost savings remains an open question.

I do believe a good PR campaign will counterbalance some of the fear of digitizing health records. Some of the fear is unfounded, some is justified as I mentioned above.

Paul Cerrato
Editor, InformationWeek Healthcare
User Rank: Apprentice
12/7/2011 | 3:49:04 PM
re: Health Information Exchanges: Patients Must Be Convinced
I don't sit around the house wearing a tinfoil hat, but I don't believe for one second in the altruistic intent of the Fed's for HEI's. For that matter the industry. Just look at your own positioning of the issue - consumers are afraid.....they don't understand....we just need more PR.

Healthcare costs continue to escalate despite numerous promises of how HIT would reduce costs. HEI's will not save patients any money. If you believe it will I would love to see the rationale behind it and your willingness to bet your farm or at least your paycheck on it.
User Rank: Apprentice
12/5/2011 | 10:21:12 PM
re: Health Information Exchanges: Patients Must Be Convinced
I assume you are aware that ONC awarded a " $26 million public relations contract from the Department of Health and Human Services for a campaign on healthcare information technology, and related privacy and security issues" in April of 2010?

"In soliciting bids for the project, HHS stated, GǣThe campaign seeks to reach consumers, patients and healthcare providers to build approval for HIT adoption and meaningful use; increase patient and provider participation in electronic health information exchange; educate the public about the uses of personal health information and privacy and security protections available to them; and generate participation in HITECH programs (e.g. loans, grants, contracts).

GǣThe contractor will use a comprehensive, integrated approach to successfully communicate about privacy, security and meaningful use to target audiences in creative, meaningful ways.Gǥ

The proposal said activities Gǣcould include, but are not limited to: targeted paid advertising, earned media support and grassroots outreach.Gǥ"

BTW- As one of the leading advocates of patient centered health IT even I have huge concerns that no one is taking a look at much broader issues that consumer/patients have when it comes to information exchange and the secondary uses of that data (legal under HIPPA).

Just take a look at the multi-billion dollar trade of pharma information and ask yourself how does that benefit consumers? or the new "free" EHR's which are paid for by pharma putting ads right on the doctors EHR next to your clinical data (essentially putting a drug rep on the exam table with the patient). Or what about women's health and privacy? Women at Swedish Medical Center will no no longer have access to any abortions now Swedish Medical Center (5 hospital system) is affiliating with a Catholic Hospital system in order to cut costs on their IT projects? Is there any concern that you will now be able to identify every woman in a region who has had an abortion, every high school kid with an STD or every men with impotence and then reuse that data?

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