Healthcare // Electronic Health Records
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8/26/2014
02:50 PM
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National Health Database: Good Medicine Or Privacy Nightmare?

State health information exchanges could eventually pool patient data into a vast national database, but privacy advocates have significant concerns.

Healthcare IT Cloud Safety: 5 Basics
Healthcare IT Cloud Safety: 5 Basics
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State health information exchanges could one day connect, compiling patient data into a vast national database.

Such a centralized repository of information won't necessarily result from a request for proposal and years of integration work. Rather, it's probably starting right now, as states create health information exchanges that ultimately will connect, allowing professionals from throughout the country to access records regardless of location or insurance plan.

Advocates argue that creating a centralized storage center makes sense medically. Patients located on the West Coast, for example, could get treatment from specialists in Boston, assured that clinicians can access their complete and current healthcare information. Patients would no longer spend hours completing duplicate forms for each individual clinician since every provider's office could access all patient records. Risks and costs would drop as test results and other medical information become available nationally.

[Has your organization taken these steps to bolstering security? See 10 Ways To Strengthen Healthcare Security.]

Earlier this year the Office of the National Coordinator (ONC) for Health Information Technology (HIT) unveiled its 10-year interoperability plan, which aims to improve care, cut costs, and enhance patient engagement by enabling government agencies to access patient data from a broader spectrum of providers.

"There is no better time than now to renew our focus on a nationwide, interoperable health IT infrastructure -- one in which all individuals, their families, and their healthcare providers have appropriate access to health information that facilitates informed decision-making, supports coordinated health management, allows patients to be active partners in their health and care, and improves the overall health of our population" the report says.

Access to patients' records regardless of their hometown or primary physician would reduce the number of accidental deaths related to medical errors, said Stephen Cobb, senior security researcher at ESET North America. In 2013, between 210,000 and 400,000 patients in the US died as a result of medical errors, according to the Journal of Patient Safety, with serious harm 10 to 20 times more likely to occur than lethal harm.

"If we had better... access to data, we could solve these [problems]," Cobb said. "Imagine if you were able to [swipe] an unconscious person's fingerprints and pull up the person's records to find they're allergic to latex or penicillin."

On the other hand, the Citizens' Council for Health Freedom argues that centralizing the nation's patient records is dangerous and intrusive. EMR benefits are negligible and unproven, countered Twila Brase, the organization's president and co-founder, and the risks far outweigh any rewards.

"Our government is funneling billions of dollars into systems that will dump all of our private medical records into one giant hub -- accessible by many," Brase said. "The government is touting these procedures as ways to streamline patient care, but they're actually an attempt to capture and store Americans' private medical data and share it with agencies that have nothing to do with health care."

Critics of a national health database worry about where this data will be stored, how it will be used, and who will have access to the information. Despite laws that protect individuals from discrimination due to medical condition, and insurers' inability to ban coverage because of prior medical conditions, skeptics of a nationwide health database fear misuse, abuse, and theft of these personal records. They suspect companies will profit

Alison Diana has written about technology and business for more than 20 years. She was editor, contributors, at Internet Evolution; editor-in-chief of 21st Century IT; and managing editor, sections, at CRN. She has also written for eWeek, Baseline Magazine, Redmond Channel ... View Full Bio

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Joe Stanganelli
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Joe Stanganelli,
User Rank: Ninja
9/10/2014 | 7:49:54 AM
Re: hours?
@Alison: Actually, now that you mention it, they gave me a survey to assess how -- if at all -- depressed I was.

Hmmm...
Alison_Diana
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Alison_Diana,
User Rank: Author
9/8/2014 | 10:07:34 AM
Re: Little of both
A national database would provide researchers, government, pharmaceutical companies, and others with tremendous insight into all sorts of things. For example, they could know, in real-time, when and where people are getting contagious diseases like flu, measles, or mumps, then act accordingly. It would also help combat things like Ebola and MERS, as well as cancer. As you say, @pfretty, it would be vital for buy-in that any and all participants reassure the general public about the sanctity of this data, that it's truly de-identified, and secure. Without those valid assurances, then the repercussions could be dangerous (as in some people might avoid healthcare, lie to clinicians, etc.).
pfretty
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pfretty,
User Rank: Ninja
9/8/2014 | 9:29:31 AM
Little of both
Assuming organizations are diligent in complying with best practices, this goal of a centralized health database has far more benefits than detractors. Not only could it help ease usage when people travel, it also opens up the opportunity for strategic big data analysis that could help create better interfaces and treatments. Insight discovery is one of the most powerful goals as echoed in a recent SAS survey. The more organizations understand their environment, the better they operate. The key is compliance and adhereance to proven security tactics. 

 

Peter Fretty
Alison_Diana
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Alison_Diana,
User Rank: Author
9/2/2014 | 9:33:52 AM
Re: Sounds like a fairy tale more than a nightmare
Thanks for the international perspective, @Li Tan. Would you prefer to have your healthcare providers linked, so you (ideally, anyway!) didn't have to repeatedly provide new doctors or testing centers with the same information? Or do you prefer the way your healthcare system is structured? Is China looking to a more integrated network or is it keeping the status quo? It's fascinating to learn how other nations tackle this common problem: I think all countries face the same challenges -- trying to reduce the cost of care, while simultaneously improving the quality and scope. 
Alison_Diana
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Alison_Diana,
User Rank: Author
9/2/2014 | 9:30:09 AM
Re: hours?
Did the doctor's office say or do anything after you checked the "no" box, Joe? Like you, I certainly read the fineprint very carefully these days, although I wish I had gone to law school sometimes because some providers' paperwork is far from clear. I've never had a problem when I won't give an SSN, although I'm amazed at how many offices still include that line in their forms. 
Li Tan
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Li Tan,
User Rank: Ninja
9/2/2014 | 1:43:48 AM
Re: Sounds like a fairy tale more than a nightmare
Some cents from my side - in China we are far from establishing a centralized data warehouse to store personal health information. Even different hospitals are not interconnected and patient information is not shared. In other words, you need to create a new profile if you change the hospital! So the threats/fairy tale described in this post should not happen in short term in China.:-)
Joe Stanganelli
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Joe Stanganelli,
User Rank: Ninja
8/29/2014 | 10:28:40 PM
Re: Another Epic Government Fail to Screw Americans
@Susan: There's also insurance carriers.  Cyberinsurance carriers may require their clients to do more than the bare minimum.  What's more, some take measures to help ensure that their clients have better security, including training.
Joe Stanganelli
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Joe Stanganelli,
User Rank: Ninja
8/29/2014 | 3:37:48 PM
Re: hours?
@Alison: I suppose that's true (re: the cumulative effect).  At the same time, from a risk standpoint, I'm not convinced it's worth it -- especially considering the heightened spotlight being shed on data breaches.

At my most recent physical, I was given a very lengthy, fine-print consent document to sign regarding putting all of my health data in a third-party-maintained public cloud database.  Given that the words "secure database" were used so often, the rather extreme fearmongering language used to coax me into signing (i.e., that i might not get the best medical care in an emergency), and my specialized knowledge of the subject of healthcare data security, I quickly checked "No, I do not consent" before I finished reading even half of it.

I've already had one compromise of my electronic health data.  I don't care for another.
progman2000
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progman2000,
User Rank: Ninja
8/29/2014 | 9:16:49 AM
Re: Sounds like a fairy tale more than a nightmare
Yes - the whole basis of our application is to collect the whirl wind of documentation that surrounds a patients visit, he had no concept of any of that.  We didn't didn't hire him although it would have been interesting to see how he would have worked out.
Alison_Diana
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Alison_Diana,
User Rank: Author
8/29/2014 | 9:06:33 AM
Re: Sounds like a fairy tale more than a nightmare
It is interesting to hear how different countries operate. I come from the UK originally, home of course to National Health which is also run by government. As I recall (I was a child when I relocated to US), you're given a National Health number when you're born (we don't have SSNs in UK). So of course the government knows all your health info. OTOH, you cannot be deprived of health insurance, irregardless of your condition. And, contrary to some things I've seen online, if you're wealthy enough or choose to spend your hard-earned money in this manner, you can purchase private insurance. 

Was this gentleman surprised at the complexity of the US system, since it's private instead of government-run? Really interesting story!
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