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Yes, you do have a right to your health records

Lest anyone forget — including the American Hospital Association, which wants to take 30 days post-discharge to supply copies of medical records to patients — HIPAA explicitly gives patients the right to access their own records. This is not new. The HIPAA privacy rules have been in force since 2002. Yet, far too many patients have no idea of this right and far too many providers don’t inform patients of this right or do what they can to prevent access.

Fortunately, the HHS Office for Civil Rights, which enforces HIPAA privacy and security standards, is trying to change that with an outreach campaign, including this video.

 

Unfortunately, the video has been viewed just 556 times as of this writing. Equally unfortunately, the video directs viewers to visit HHS.gov/OCR. But the real information you need is at http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html. I found that page using Google, not by trying to navigate the menu, which is not very intuitive, even for someone who knows the healthcare industry. I can’t imagine the average consumer finding that page without help or plain old dumb luck.

Various HHS agencies are trying hard to disseminate messages to the public. I think of AHRQ’s Questions are the Answer campaign. I’ve seen poster-size ads around Chicago telling people to visit ahrq.gov for a list of questions they should be asking their healthcare providers, but the better link, not mentioned in the ads, is ahrq.gov/questions.

For that matter — and I mentioned this to one of the AHRQ higher-ups at the HIMSS conference a few months ago — how many people really know what the Agency for Healthcare Research and Quality is? Wouldn’t it be better to have a more memorable URL? The Obama administration is good at setting up URLs for programs it wants to promote for political reasons — think recovery.gov and even the consumer-friendly healthcare.gov — but the less-politicized divisions such as AHRQ (remember, Director Dr. Carolyn Clancy is a career professional who has run AHRQ for two presidents since 2003) and OCR haven’t done so. They need to come up with easy-to-remember URLs that the general public can remember. Bureaucrat-speak just isn’t getting the job done.

Meantime, physicians need to become more patient-friendly, too. I invite you to check out this Salon article from a few weeks ago entitled, “Listen up, doctors: Here’s how to talk to your patients.” Please share with family, friends and, yes, your doctors. Share the OCR video, too. If OCR can’t make the information easy to find, I will.

 

June 12, 2012 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Extormity’s HIMSS unveiling

In case you missed it, fictional vendor Extormity “came out” at HIMSS11. CEO Brantley Whittington revealed himself as the alter ego of Jeff Donnell, president of PHR vendor NoMoreClipboard.com. Donnell played the character the whole way, even sitting down for a lengthy “interview” with well-known medical informaticist Dr. Lyle Berkowitz during the HIT X.0: Beyond the Edge sub-conference. Today, Extormity released the video, along with the presentation slides from this tongue-in-cheek session.

Click here to watch.

November 14, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Health 2.0 by Twitter

Here’s my version of Short Attention Span Theater (which is pretty much what Twitter is anyway), of the recently concluded Health 2.0 Fall Conference, as I reported via Twitter. Note the juxtaposition between observation, commentary and snark.

Preconference sessions on Sunday: [blackbirdpie url=”http://twitter.com/#!/nversel/status/118085752008622080″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118087344766193664″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118087651160109056″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118179141274189825″]

Monday plenary sessions: [blackbirdpie url=”http://twitter.com/#!/nversel/status/118362364071518208″] This got someone from HealthTap to misinterpret what I had said: [blackbirdpie url=”http://twitter.com/#!/HealthTap/status/118365108513673216″] To which I replied: [blackbirdpie url=”http://twitter.com/#!/nversel/status/118365613512073216″] (For the record, @CHCF is not the correct handle for the California HealthCare Foundation. It’s @CHCFnews.)

I also had an important question for HealthTap, one that so far has gone unanswered. [blackbirdpie url=”http://twitter.com/#!/nversel/status/118363924281303040″]

I retweeted/commented on many others’ tweets, too. [blackbirdpie url=”http://twitter.com/#!/nversel/status/118366901800935424″] [blackbirdpie url=”http://twitter.com/#!/pjmachado/status/118366688705122304″] [blackbirdpie url=”http://twitter.com/#!/pjmachado/status/118384207276949504″] [blackbirdpie url=”http://twitter.com/#!/ekivemark/status/118389410910846977″]

I found quite a bit of news and lack of news being announced on stage. [blackbirdpie url=”http://twitter.com/#!/nversel/status/118383509172793344″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118384168316059649″]

And don’t take kindly to vagueness about the word “solution.” [blackbirdpie url=”http://twitter.com/#!/nversel/status/118390936257560576″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118391125554892800″] [blackbirdpie url=”http://twitter.com/#!/grapealope/status/118391490748743680″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118393697674067968″] [blackbirdpie url=”http://twitter.com/#!/grapealope/status/118394480213766144″] (I get the sense @grapealope is among the many Silicon Valley cheerleaders who came not to a conference but a pep rally. I bet the Kool-Aid tasted great.)

[blackbirdpie url=”http://twitter.com/#!/nversel/status/118402107702394880″] [blackbirdpie url=”http://twitter.com/#!/rdesain/status/118486784484192256″]

Then came the lamest presentation of them all, in a plenary session no less, a demo of an overly cutesy “life game” called Mindbloom. The presentation was accompanied by distracting sound effects of birds chirping the entire time, and the game itself featured a guide character called the “enlightening bug.” My impression? [blackbirdpie url=”http://twitter.com/#!/nversel/status/118492715196497920″]

Others weren’t so harsh, but at least had questions about the purpose and appeal. [blackbirdpie url=”http://twitter.com/#!/pjmachado/status/118492523277729793″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118492973959888896″] [blackbirdpie url=”http://twitter.com/#!/pjmachado/status/118493232614215680″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118493422821715968″]

I later asked fellow realist John Moore of Chilmark Research this question: [blackbirdpie url=”http://twitter.com/#!/nversel/status/118498456888279040″]

At least I wasn’t the only one worn out by having to separate the wheat from the chaff. [blackbirdpie url=”http://twitter.com/#!/familyhealthguy/status/118479710656278529″]

I did tone down my rhetoric a bit on Tuesday, though. [blackbirdpie url=”http://twitter.com/#!/nversel/status/118569075063529472″]

OK, maybe only a bit, especially after Microsoft’s Mike Raymer said, “It was good to have two companies create a marketplace,” in reference to Microsoft’s HealthVault and the soon-to-be-departed Google Health. [blackbirdpie url=”http://twitter.com/#!/nversel/status/118799888640258048″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118800555463290880″]

I highlighted what I saw as good points: [blackbirdpie url=”http://twitter.com/#!/2healthguru/status/118706082238562305″] [blackbirdpie url=”http://twitter.com/#!/nversel/status/118706473646817281″]

And I asked a question that I’d love to hear an answer to: [blackbirdpie url=”http://twitter.com/#!/nversel/status/118801288849920002″]

I would be less likely to tune out certain sessions if there were more related to healthcare and less to personal fitness and wellness. Of course, others have different viewpoints, which is why it might make more sense to separate the two into different conferences or at least different tracks.

September 30, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

PHRs that don’t have the cachet of Microsoft and Google

In case you were still of the opinion that Google and Microsoft were the major players and groundbreaking pioneers of personal health records, here’s a partial list of other companies that have been at it for at least as long. I believe CapMed goes back as far as 1991. Some have been bought by larger firms, but many are still independent.

Clip and save, or pass on to your favorite tech journalist that got snookered by the Google PR machine.

Access Strategies

CapMed

ActiveHealth Management

MEDecision

HealthCapable

MyMedLab

NoMoreClipboard.com

Carefx

Good Health Network

iPHER

MedicalDrive.com

MediKeeper

Applied Research Works

In any case, I remain unconvinced that the direct-to-consumer, “untethered” model—no connection to an electronic medical record unless the patient sets it up that way (and really, can any EMR today be configured like that anyway)—can grab more than a small subset of data geeks as customers.

July 18, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

RIP, Google Health, doomed to fail from the start

It’s official, Google is in fact walking away from Google Health, the way overhyped, way underused personal health record platform. In a posting on the Google Blog today, Aaron Brown, Google Health’s senior product manager, said the company would “retire” Google Health Jan. 1, 2012. (Data will be available to download until Jan. 1, 2013.)

Google also decided to wind down another experiment, Google PowerMeter.

From the post:

When we launched Google Health, our goal was to create a service that would give people access to their personal health and wellness information. We wanted to translate our successful consumer-centered approach from other domains to healthcare and have a real impact on the day-to-day health experiences of millions of our users.

Now, with a few years of experience, we’ve observed that Google Health is not having the broad impact that we hoped it would. There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts. But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people. That’s why we’ve made the difficult decision to discontinue the Google Health service.

In the end, while we weren’t able to create the impact we wanted with Google Health, we hope it has raised the visibility of the role of the empowered consumer in their own care. We continue to be strong believers in the role information plays in healthcare and in improving the way people manage their health, and we’re always working to improve our search quality for the millions of users who come to Google every day to get answers to their health and wellness queries.

Google said it soon will install functionality to help current PHR users migrate their data to other services following the Direct Project protocol, in the spirit of “data liberation.” That’s nice, but data really needs to connect with EHRs, or doctors and patients simply won’t use PHRs. Period.

I’m also going to take issue with Google referring to Google Health and Google PowerMeter as “trailblazers in their respective categories.” Google didn’t blaze any trails in PHRs. Dozens of other, smaller companies that have been working on the concept of PHRs for a decade or more are the real trailblazers.

The bottom line on Google Health? Google came into healthcare arrogantly believing it could save healthcare from itself and be all things to all people. (See also: WebMD, circa 2001.) It leaves with its tail between its legs.

Healthcare really does need disruptive outside forces, but it has to be a product people want to use. The iPad qualifies. Google Health never did, nor has any other untethered PHR to date.

 

 

 

June 24, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Facebook + health data = all sorts of HIPAA questions

“Time’s Person of the Year is Mark Zuckerberg. Sorry, Julian Assange, I guess you didn’t violate enough people’s privacy.” — Stephen Colbert, Dec. 15, 2010.

Yes, Facebook has issues with privacy. Just Monday, the Electronic Privacy Information Center, the Center for Digital Democracy, Consumer Watchdog and the Privacy Rights Clearinghouse formally asked the Federal Trade Commission to stop Facebook from launching a facial-recognition feature. Last week, European regulators said they would investigate Facebook after it came out that Facebook’s 500 million to 700 million users were automatically opted in to facial recognition.

And now we hear that Microsoft is adding Facebook authentication to its HealthVault health information platform.

Let me repeat: You can now sign in via Facebook to a HealthVault personal health record.

Though I’m not a lawyer, I’m wondering if Microsoft might not be treading in some dangerous territory. What if it’s possible to link HealthVault updates to Facebook so your entire social network knows that you just got a lab test result back? What if the Facebook location tagger indicates that you’ve just visited an STD clinic? Yeah, sometimes discretion is in order, and Facebook generally isn’t the place to be discreet.

According to Healthcare IT News’ MobileHealthWatch blog, Microsoft’s Sean Nolan was practically giddy about this arrangement helping HealthVault go mobile. I think mobility will help make PHRs a bit more attractive to patients, but I still think PHRs are DOA if they don’t link to EHRs.

I just don’t see a lot of medical practices being willing to send electronic data back and forth to HealthVault accounts if Facebook is handling the security, making MobileHealthWatch’s claim that, in wake of the supposed demise or at least de-emphasis of Google Health, HealthVault is now “more or less unchallenged as the PHR of record” a joke. There’s no such thing as a PHR of record, and there won’t be as long as authentication passes through Facebook.

 

June 13, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Bosworth: PHRs need to do more than just store data

You may have heard news of Google essentially putting its Google Health PHR platform in cold storage. Whether it’s true or not, the “untethered” PHR—one not connected to a health system’s EHR—has been a non-starter for years. I’ve been particularly critical of the undeserved attention Google Health and Microsoft HealthVault have received, when many smaller companies have been working on PHRs for much longer.

The original head of the Google Health project, Adam Bosworth, left the company in 2007 under suspicious circumstances—did he quit or was fired?—prior to the way overhyped 2008 introduction of this vaporware. Bosworth has gone on to start a new company, Keas, that produces a PHR that incorporates care plans. Keas got some undeserved hype itself, in the form of an October 2009 story in the New York Times that, from what I understand, was suggested by a Times editor who also was advising Keas. (That editor is no longer with the Times.)

Keas itself hasn’t gained much traction, either. I reported in September 2010 that Keas abandoned its original plans to sell direct to consumers in favor of partnering with insurance companies and large employers. That was the last I had heard about Keas until last week, when TechCrunch TV posted the following short interview with Bosworth, entitled, “Adam Bosworth On Why Google Health Failed”:

Bosworth said that Google simply didn’t offer anything the public really wanted. “They basically offered a place to store data,” he said. “Our data shows people don’t really want a place to store data per se. They want to do something fun and engaging. If it’s not fun, if it’s not social, why would they do it?” Yes, that makes sense.

Bosworth said that people need encouragement and even peer pressure to practice healthy behaviors. Bosworth said he lost 22 pounds in 18 weeks by walking 4 miles each way to and from his downtown San Francisco office four times a week, and he credited the encouragement he got from checking in on Keas.

That’s a great sign, but I wonder how many other stories like his there are out there? My guess is, not many. I’m thinking online communities of like-minded people or those facing similar health issues have been far more successful. Last night’s post is a prime example.

Feel free to prove me wrong.

June 6, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Bet on videoconferencing growth before PHR ubiquity

Last week, I reported in InformationWeek on a Manhattan Research study showing that 7 percent of U.S. physicians were chatting with patients via videoconference. What the research didn’t say is how many consultations actually take place by videoconferencing. My guess is that it’s minuscule, but virtual visits will soon become commonplace.

According to Australian online healthcare community eHealthSpace, technology vendor Siemens is forecasting that 20 percent of all medical consultations in Australia will take place online by 2020. Much of that growth will come from rural and remote areas of a vast country that’s full of remote, sparsely populated areas.

I find that much more believable than another Siemens prediction that 90 percent of Aussies will have a “personally controlled electronic healthcare record” (whatever that means) by 2020. I’m guessing that videoconferencing with doctors will boom long before there’s widespread adoption of any health record controlled by patients.

 

June 3, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Park defends plain-text format of ‘Blue Button’

Todd Park

Well, I guess everything else pales in comparison to the news late Sunday night that Osama bin Laden has been killed and that his body is in U.S. custody, but I had been meaning to bring you something from another part of the government. So now, nearly three hours after I sat down to start writing, here goes.

Remember back in February how I reported that the Blue Button Initiative that HHS, the VA and the Department of Defense had been touting was much ado about nothing because the add-on outputs data in plain, unstructured text that’s essentially useless when imported into an EHR? Well, government officials continue to defend it.

At the Microsoft Connected Health Conference last Wednesday in Chicago, HHS CTO Todd Park extolled the virtues of Blue Button, saying that it was a conscious decision on the part of the people behind the idea—particularly ex-Google and Microsoft star Adam Bosworth and author/Internet scholar Clay Shirky—to export patient information in untagged text format as a quick means of “liberating” data from proprietary systems. It then is up to the patient and his/her providers to decide what do do with the exported record.

“We decided that the burden shouldn’t have to be on the vendor to parse the data,” Park told me offstage.

Well, what do you think of that? Should Blue Button follow some established protocol that organizes data in discrete format like the Continuity of Care Record, Continuity of Care Document or Clinical Document Architecture, or is raw, unorganized text good enough?

UPDATE, 10:50 pm CDT: I found the rest of my notes and see that Park said 270,000 unique users have downloaded data through Blue Button, an average of three times each, even though the government hasn’t done much in the way of marketing. “Simplicity is the key,” he said.

 

May 1, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Healthcare Scene is on LinkedIn

As you may know, this site is part of John Lynn’s new Healthcare Scene blog network. In the spirit of building a community, John has started a Healthcare Scene LinkedIn group to promote the network and his flagship EMR and HIPAA blog. Join up and start networking with us.

Last week on that EMR and HIPAA blog, John ran a poll asking readers about their experiences with personal health records. (I’ve long been a critic of the “untethered” PHR that’s not connected to a specific healthcare organization or EMR. An empty PHR doesn’t help patients, while physicians aren’t likely to use one not directly tied to an EMR because it doesn’t fit their workflow and they often can’t trust the data inside.)

Not surprisingly, 60 percent of the 53 respondents had never started a PHR. Another 17 percent had created one but haven’t added much data to it. Just 13 percent say they have PHRs that are mostly updated.

It’s an unscientific survey, but I’m sure usage among readers of a health IT blog are far more likely than the general public to have or use a PHR. Despite what some vendors or consumer-facing publications might have you believe, PHRs are a tiny, almost insignificant segment of health IT right now.

March 9, 2011 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.