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Taking a New Look at the Lamented Personal Health Record: Flow Health’s Debut

Posted on June 8, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

After the disappointing lack of adoption suffered by Google Health and Microsoft HealthVault, many observers declared personal health records (PHRs) a non-starter, while others predicted that any progress toward personal control over health data would require a radically new approach.

Several new stabs at a PHR are emerging, of which Flow Health shows several promising traits. The company tries to take advantage of–and boost the benefits of–advances in IT standards and payment models. This article is based on a conversation I had with their general counsel, David Harlow, who is widely recognized as the leading legal expert in health IT and health privacy and who consults with companies in those spaces through the Harlow Group.

Because records are collected by doctors, not patients, the chief hurdle any PHR has to overcome is to persuade the health care providers to relinquish sole control over the records they squirrel away in their local EHR silos. Harlow believes the shift to shared risk and coordinated care is creating the incentive for doctors to share. The Center for Medicare & Medicaid Services is promising to greatly increase the role of pay-for-value, and a number of private insurers have promised to do so as well. In short, Flow Health can make headway if the tangible benefit of learning about a patient’s recent hospital discharge or treating chronic conditions while the patient remains at home start to override the doctor’s perception that she can benefit by keeping the patient’s data away from competitors.

The next challenge is technically obtaining the records. This is facilitated first by the widespread move to electronic records (a legacy of Meaningful Use Stage 1) and the partial standardization of these records in the C-CDA. Flow Health recognizes both the C-CDA and Blue Button, as well as using the Direct protocol to obtain records. Harlow says that FHIR will be supported when the standard settles down.

But none of that is enough to offer Flow Health what the doctors and patients really want, which is a unified health record containing all the information given by different providers. Therefore, like other companies trying to broaden access to patient data, Flow Health must deal with the problem that Dr. Eric Topol recently termed the Tower of EMR Babel. They study each format produced by different popular EHRs (each one using the C-CDA in slightly incompatible ways) and convert the data into a harmonized format. This allows Flow Health to then reconcile records when a diagnosis, a medication list, or some other aspect of the patient’s health is represented differently in different records.

What’s next for Flow Health? Harlow said they are preparing an API to let third parties add powerful functionality, such as care coordination and patient access from any app of their choice. Flow Health is already working closely with payers and providers to address workflow challenges, thus accelerating the aggregation of patient health record data for access and use by clinicians and patients.

A relative of mine could have used something like Flow Health recently when her eye doctor referred her to the prestigious Lahey Clinic in the Boston area. First of all, the test that led to the referral had to be repeated at the Lahey Clinic, because the eye doctor did not forward test results. Nor did anyone provide a medication list, so the Lahey Clinic printed out a five-year old medication list that happened to hang around from a visit long ago and asked her to manually update it. There was also confusion about what her insurer would cover, but that’s a different matter. All this took place in 2015, in the country’s leading region for medical care.

It seems inevitable that–as Flow Health hopes–patients will come to demand access to their medical records. A slew of interesting experiments will proliferate, like Flow Health and the rather different vision of Medyear to treat health information like a social network feed. Patient-generated data, such as the output from fitness devices and home sensors, will put yet more pressure on health care providers to take the patient seriously as a source of information. And I’ll continue to follow developments.

Health Datapalooza 2014 Recap

Posted on June 9, 2014 I Written By

Julie Maas is Founder and CEO of EMR Direct, a HISP (Health Information Service Provider) whose mission is to simplify interoperability in healthcare through the use of Direct messaging EHR integration and other applications. EMR Direct works with a large developer community to enable Direct for MU2 and other workflows using a custom, rapid-integration API that's part of the phiMail Direct Messaging platform. Julie is passionate about improving quality of care and software user experience, and manages ongoing interoperability testing within DirectTrust. Find Julie on Twitter @JulieWMaas.

The Health Datapalooza conference is ripe with opportunities to inspire and be inspired.  At any given session or lunch, the developer of an emerging app is seated at your left, and the winner of some other developer challenge a few years ago is on your right.  The vibe is a bit frenetic, in a good way.

At this conference, data geeks get right down to the business of discussing controversial and innovative healthcare data issues.  Nothing is watered down.  Even the Director of NIH Francis Collins, whom everyone wanted to hear play his guitar and sing, charged right in with data-rich graphs and statistics.  Jeremy Hunt of the UK offered sobering yet transparent error figures, encouraging the use of data to learn from and improve upon our safety practices at the point of care.  Keynotes from Jonathan Bush and Todd Park alleviated any need for caffeine, even though there was plenty on hand.  Countless application developers told truly compelling stories of their solutions.  Kathleen Sebelius challenged us to reconsider “the way we’ve always done it”.

What’s not to love?

I had hoped we would dive deeper into interoperability issues such as consistent data transport and payload standards.  Or, how a sensitive dependence on initial conditions such as protocol specifications, as in chaos theory, can lead to unexpected behaviors in pairwise HISP (Direct Exchange service provider) interoperability, seemingly at random.  Our data needs to be free to move about the care continuum, in order to be the most useful to us.  Gamification was suggested as a way to help patients adhere to medications.  Perhaps it could also encourage Healthcare IT companies to better adhere to specifications?

Silo was another buzzword that was used a lot last week.  That is to say, it’s a buzzword you don’t want to be associated with.  It was reassuring that we’ve set expectations properly around interoperability.  Fortunately, silos are going the way of the beeper and the booth babe.

There were some well-received promises of intense BlueButton promotion in the fall by Dr. Oz and several others.  I was also really encouraged to see the BlueButton Toolkit site preview on Sunday.  Look for more information about this when it goes live, and be sure to send Adam Dole your suggestions.  Great work, Adam!

Maybe next year at Health Datapalooza, we’ll talk about structuring the data collected by wearable devices, since we certainly heard this year about how integral to wellness quantified self is expected to be.  Quantified self and interoperability might even be considered as separate award categories in the Code-A-Palooza contest next year.  This could lead to more diversity and creativity in developers’ solutions, while helping to spur patient engagement and data transfer.

Countless examples of knowledge gleaned from large datasets, that could be used to make better medical decisions, were cited.  But this information hasn’t yet been integrated into day to day clinical workflow in a way that’s helpful to individual patients.  There’s no single source of individualized, analytics-enabled tools for patients to guide medical decision-making today.  But there will be!

Finding #BlueButton at #HIMSS14

Posted on February 18, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

I am having trouble believing HIMSS 14 is just a few days away. I am really looking forward to getting out of Georgia’s erratic weather and into Florida’s warmer temps. At least Orlando weather isn’t erratic. Check out the forecast:

weather

While I don’t think I’ll have time to lounge by the pool, I do anticipate having some fun playing tennis with a few #HITchicks early Monday morning. I hope Orlando’s daily rain shower holds off until later that afternoon.

I’m also looking forward to the Siemens Media Breakfast, a Lunch and Learn with ePatient Dave, HISTalkapalooza, the #HITsm tweetup, a session on health information and the Disney experience, the Georgia HIMSS networking reception, and of course the New Media Meetup (where you can meet many of your favorite Healthcarescene.com bloggers).

As I’ve been so focused on Blue Button news lately, I thought I’d see how many HIMSS sessions will be devoted to the topic. A quick search at HIMSSConference.org yields three:

sessions

The last session seems the most consumer-friendly, and right up my alley based on its objective of covering the current state of Blue Button, and its general description:

“Join experts from the from the Office of the National Coordinator for Health IT (ONC) in an interactive session to learn more about several major developments in the world of consumer and patient engagement enabled by technology, and how you can participate. This session will cover policy initiatives, standards development, and resources available to members of the private and public sectors from ONC and our many collaborators.”

In other Blue Button news, it appears that “Blue Button healthcare technologies [are] primed to explode in [the] private sector,” according to a brief article at FederalNewsRadio.com. This is basically a rehash of last week’s news that several pharmacy associations and large retailers like Kroger, Walgreens and CVS are working to “standardize their prescription data based on Blue Button policies,” but it serves as a good reminder that Blue Button started out as a VA initiative. Is it just me or does it seem that much of today’s healthcare IT started out via government development or government mandate/incentive?

Feel free to drop me a line if you know of more Blue Button-related activities at HIMSS, or have other interesting events you think I (and my readers) should check out next week.

My #BlueButton Patient Journey: PHRs & the Plight of Patient Surveys

Posted on February 7, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

Ah, the CAHPS Survey … how I love filling them out with a freshly sharpened #2 pencil. How I love digging through that kitchen junk drawer we all have to find a stamp. How I love placing that return envelope in the metal box at the top of my driveway (after I dust the cobwebs off, of course).

All jokes about the floundering postal system aside, my Blue Button patient journey has made me hyper aware of the potential for non-electronic processes to become digitized. In the case of patient satisfaction surveys, I ask not only, why not? But also, why hasn’t it already been done?

The CAHPS (Consumer Assessment of Healthcare Providers and Systems) survey is produced by the Agency for Healthcare Research and Quality, and was designed to provide healthcare facilities with a way to measure and improve the patient experience. As an engaged patient (and a busy, working mom), my experience would be improved if I were offered the convenient alternative of taking CAHPS surveys online.

I realize I’m getting more into user experience than necessarily discussing the Blue Button initiative, but I feel the two are ultimately a means to the same end – more engaged patients, more effective care and better outcomes.

I think it would be great if I could check a box during the set up of my profile in the patient portal that alerts my provider to the fact that I do or don’t want to take surveys online. The paper option will still be preferable to some, but it would be nice to have the choice right off the bat. Perhaps this is already being done and I just haven’t experienced it yet in my neck of the woods. Let me know in the comments below if you’ve taken patient satisfaction surveys online, and/or via your patient portal, and if it was more convenient/easier to fill out.

In other news, I had a great conversation with David Goldsmith at Dossia about the evolution of that personal health record, which is currently being rolled out through employers. It seems like a really intuitive tool whose only hangup is keeping users engaged once they switch jobs and lose that connection to payer data that originally populated their profile.

Beth Friedman, founder of Agency Ten22 (a founding sponsor of HealthcareScene.com’s upcoming Healthcare IT Marketing & PR Conference), was kind enough to comment on one of my previous Blue Button blogs alerting me to AHIMA’s MyPHR.com, which provides information about getting started with personal health records. (I was happy to find that AHIMA has taken the Blue Button pledge, and has a section devoted to it at this site.)

I found the article, “Quick Guide to Creating a PHR” helpful. It was easy to understand and seems to be written for the average healthcare consumer. I’m surprised that it leans so heavily on paper-based processes, but that’s probably a first step that most people would be comfortable with before moving on to digital processes. I was disappointed that it didn’t offer suggestions for Internet-based PHRs. I’d feel more confident using a particular product if it was endorsed by an association like AHIMA. I’m hoping Beth will let me know if that’s something AHIMA plans to do in the future.

My #BlueButton Patient Journey – Laying the Groundwork

Posted on January 16, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

After taking the Blue Button Pledge, my next step is to get proactive with my medical records. As I may have mentioned in a previous post, I currently see four different doctors throughout the year. Three of those offer a patient portal. Two of them are in the same practice, and therefore use the same portal. Confused yet?

I think the key to being an engaged patient is to first make sure I can log in to each of these portals. I create bookmarks for them as well. I also make sure I know how to navigate through them and that all of my information is correct and up to date. I take care of the first two items by either looking back at papers given to me during my last office visit, or calling my PCP’s office to ask for a pin code.

Once I’ve looked through my information in each portal (powered by Cerner and athenahealth, respectively), I decide to go even further by messaging my PCP to let her know how my visit to a specialist went. If I don’t let her know now, I might forget many of the details when I see her again towards the end of the year. While I’m in there, I decide to look at my past bills to see why I’m still getting one for a balance I’m pretty sure I paid at my last office visit.

bluebuttondownload

Once those details are seen to, I decide to check out the portal used by two of my other doctors because I seem to remember seeing a Blue Button icon on one of the screens during my last log in. Sure enough, there is a link to “View, download or transmit health data.” Clicking this link takes me to a screen where I can “Support the Blue Button® initiative by downloading your health data and storing it in your personal records.”

I hit download and save them on my computer, but then I’m left wondering, “Now what?” I suppose uploading them to a thumb drive and taking them to whatever provider I see next might be helpful. But I have the sneaking suspicion they’d still prefer paper. Since my PCP’s portal doesn’t offer a Blue Button link to download my data, I decide to message my PCP again to let her know I’d like to see this offered. I wonder if she’ll appreciate the comment, and if she’s gotten the request from other patients.

I feel like my next step should be uploading my health data into some kind of personal health record, but which one? Where do I even start when it comes to selecting something like that? Honestly, the data entry involved with PHRs is off putting to me, which is probably why I haven’t created one up to this point.

What has worked for you and your family? Providers, are there PHRs you find easier to work with (assuming you interact with them at all?) I’d appreciate any reader suggestions and advice you’d care to give via the comments below.

New Year’s Resolution: Take the #BlueButton Pledge

Posted on January 3, 2014 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

I rarely make New Year’s resolutions, but 2014 finds me ready and willing to finally take the Blue Button pledge. Perhaps my impetus stems from the healthcare I received in 2013 (more than I would have liked), and the fact that I have logged onto to at least two different patient portals (not including my kids’) that of course can’t communicate with one another.

bluebuttonpledge

I’m even more anxious to give Blue Button a go after reading that the ONC has recently announced it is working towards incorporating the following Blue Button features:

  • the Blue Button Connector: a tool that will help patients find out which providers, health plans, and others offer Blue Button
  • OpenNotes, giving patients access to their providers’ notes
  • images such as EKGs
  • lab, medication and patient-generated data
  • vaccination records
  • Explanation of Benefits forms from payers and
  • a tool that will match eligible patients to clinical trials.

bluebuttonthankyou

As a patient, I decided to take the non-data holders’ Blue Button Pledge, whereby I “pledge to engage and empower individuals to be partners in their health through information technology.” I’ll do this by actively trying to bring all of my health data into one digital repository, and blogging about it along the way. Hopefully, I can paint a picture of how having this information at my fingertips benefits my care in some way. I already foresee it helping me to become more engaged.

I’ll also make it a point to bring up the Blue Button initiative with all of my providers. I’ll be interested to see who has heard of it, who thinks it’s a good idea, and who is so overworked they don’t have much time for it. Look to future posts for the nitty gritty of what it takes to actually gather disparate health data and put it in one place.

Have you taken the Blue Button pledge? How has it impacted your care, or that of your patients? Let me know in the comments below.

AHIMA Plans To Promote Blue Button

Posted on October 31, 2013 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

This week, at its annual conference, AHIMA announced that it’s launching a drive to get its members and state organizations to push use of Blue Button technology.  The idea behind the push is to improve consumer access to personal health records, according to a report in iHealthBeat.

For those who aren’t familiar with it, the Blue Button dates to 2010, when the Department of Veterans Affairs launched the tool to help veterans access and share their personal health data in a standardized manner. Consumers who click on the Blue Button get human-readable personal health data in ASCII format.

Since its inception, both private organizations and federal agencies have implemented the Blue Button. According to ONCHIT, almost 500 healthcare organizations have joined the Blue Button Pledge Program, which encourages providers to make personal health records available to individuals and caregivers. Almost 80 million Americans can now access their health information through the program.

Now, AHIMA is encouraging wider expansion of Blue Button use. The association is urging members and state AHIMA chapters to inform employers, families, healthcare providers and other health professionals of the benefits of the Blue Button format, according to iHealthBeat.

This effort should be enhanced as providers move toward Blue Button+, the next generation of Blue Button efforts, which meets and builds on view, download and transmit requirements in Meaningful Use Stage 2.

Neither Blue Button nor Blue Button+ programs magically transform patient data into something everyone can see and use, but they’re steps in the right direction.

So, what’s the next step when Blue Button functionality becomes common?  Will it help patients manage their data, or is it unrealistic to expect them to download and transfer information? I think the jury’s still out on this one.

If nothing else, though, we can look too the Automated Blue Button Initiative, which will probably evolve away from ASCII into more universal standards like XML. I’m keeping my eye on #ABBI to see where that goes, for sure.

Blue Button Initiative Picking Up Speed

Posted on October 1, 2012 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

The idea of the “Blue Button” has been gradually filtering into the consciousness of EMR proponents for a while now. As readers may know, the concept comes from the VA, where the idea has been to offer a single-click “blue button” allowing patients to get their VA treatment data into the hands of civilians healthcare providers.

Lately, a next gen approach known as the Automated Blue Button Initiative (ABBI) has come into focus as the right way to bring the Blue Button to the healthcare world at large. Given the energy behind ABBI, and the profile of the people involved, my guess is that it will catch fire quickly.

GE Health Standards Architect and ABBI member Keith Boone told an audience at HealthCamp Boston, where Blue Button was a very hot topic, that the button will evolve from a flat ASCII text download to more flexible formats such as XML, according to SearchHealthIT.com.

Along these lines, I was interested to note that as ONC head Farzad Mostashari sees it, the ultimate goal for the Blue Button is to give patients more control. “The killer enabler is actually patient online View-Download-Transmit, esp with #ABBI.” he tweeted this week.

The ONC’s Standards & Interoperability Framework community, meanwhile, is working on standards and tools to push personal data to a specific location. These include using Direct secure messaging protocols and Consolidated Clinical Document Architecture, according to Douglas Fridsma, MD, director of ONC’s Office of Standards and Interoperability, who spoke with Healthcare IT News.

The standards and  specs will allow patients to both download health information to their computer and route data from their provider to PHRs, e-mail accounts or other preferred applications.

All told, it looks like a key set of Meaningful Use Stage 2 required technologies are coming right along. Will patients actually use them? Hard to say, as we haven’t exactly seen a huge groundswell of PHR love or demand for EMR access to date. But progress toward making sharing possible never hurts.