ZibdyHealth Adapts to Sub-Optimal Data Exchange Standards for a Personal Health Record

Reformers in the health care field, quite properly, emphasize new payment models and culture changes to drive improvements in outcomes. But we can’t ignore the barriers that current technology puts in the way of well-meaning reformers. This article discusses one of the many companies offering a patient health record (PHR) and the ways they’ve adapted to a very flawed model for data storage and exchange.

I had the honor to be contacted by Dr. Hirdey Bhathal, CEO/Founder of ZibdyHealth. Like many companies angling to develop a market for PHRs, ZibdyHealth offers a wide range of services to patients. Unlike, say, Google Health (of blessed memory) or Microsoft HealthVault, ZibdyHealth doesn’t just aspire to store your data, but to offer additional services that make it intensely valuable to you. Charts and visualizations. for instance, will let you see your progress with laboratory and device data over time. They call this a “Smart HIE.” I’ll look a bit at what they offer, and then at the broken model for data exchange that they had to overcome in the health care industry.

The ZibdyHealth application

Setting up an account with ZibdyHealth is as easy as joining Facebook. Once you’re there, you can create health information manually. The company is working with fitness device makers to allow automatic uploads of device data, which can then be saved as a standard Continuity of Care Document (CCD) and offered to doctors.

You can also upload information from your physician via their health care portal–with a degree of ease or difficulty depending on your provider–and share it with other clinicians or family members (Figure 1). You have fine-grained control over which medications, diagnoses, and other information to share, a form of control called segmentation in health care.

Figure 1. Zibdy discharge summary displayed on mobile device

Figure 1. Summary of visit in Zibdy

Dr. Bhathal would like his application to serve whole families and teams, not just individuals. Whether you are caring for your infant or your aging grandmother, they want their platform to meet your needs. In fact, they are planning to deploy their application in some developing nations as an electronic medical record for rural settings, where one healthcare provider will be able to manage the health data for an entire village.

Currently, ZibdyHealth allows speciality clinics to share information with the patient’s regular doctor, helps identify interactions between drugs provided by different doctors, and allows parents to share their children’s health information with schools. This consolidation and quick sharing of medical information will work well with minute clinics or virtual MD visits.

ZibdyHealth is HIPAA-compliant, and support highly secure 256-bit AES encryption for data exchange. Like health care providers, they may share data with partners for operational purposes, but they promise never to sell your data–unlike many popular patient networks. Although they sometimes aggregate anonymized data, they do so to offer you better services, not to sell it on the market or to sell you other services themselves.

In some ways, ZibdyHealth is like a health information exchange (HIE), and as we shall see, they face some of the same problems. But current HIEs connect only health care providers, and are generally limited to large health care systems with ample resources. PHR applications such as ZibdyHealth aim to connect physicians and patients with others, such as family members, therapists, nursing homes, assisted care facilities, and independent living facilities. In addition, most HIEs only work within small states or regions, whereas ZibdyHealth is global. They plan to follow a business model where they provide the application for free to individuals, without advertisements, but charge enterprises who choose the application in order to reach and serve their patients.

Tackling the data dilemma

We’d see a lot more services like ZibdyHealth (and they’d be more popular with patients, providers, and payers) if data exchange worked like it does in the travel industry or other savvy market sectors. Interoperability will enable the “HIE of one” I introduced in an earlier article. In the meantime, ZibdyHealth has carried out a Herculean effort to do the best they can in today’s health exchange setting.

What do they use to get data from patient portals and clinicians’ EHRs? In a phrase, every recourse possible.

  • Many organizations now offer portals that allow patients to download their records in CCD format. ZibdyHealth works with a number of prominent institutions to make uploading easy (Figure 2). Or course, the solution is always a contingent one, because the provider still owns your data. After your next visit, you have to download it again. ZibdyHealth is working on automating this updating process so that providers can feed this information to the patient routinely and, by uploading the discharge CCD as part of a patient’s discharge process, ensure an easy and accurate transition of care.

  • Figure 2. List of electronic records uploaded to Zibdy through their CCD output

    Figure 2. List of uploaded CCDs

  • If providers aren’t on ZibdyHealth’s list of partners, but still offer a CCD, you can download it yourself using whatever mechanism your provider offers, then upload it to ZibdyHealth. ZibdyHealth has invested an enormous amount to parse the various fields of different EHRs and figure out where information is, because the CCD is a very imperfect standard and EHRs differ greatly. I tried the download/upload technique with my own primary care provider and found that ZibdyHealth handled it gracefully.

  • ZibdyHealth also supports Blue Button, the widely adopted XML format that originated at the VA as a text file.

I see ZibdyHealth as one of the early explorers who have to hew a path through the forest to reach their goal. As more individuals come to appreciate the benefits of such services, roads will be paved. Each patient who demands that their doctor make it easy to connect with an application like ZibdyHealth will bring closer the day when we won’t have to contort ourselves to share data.

About the author

Andy Oram

Andy Oram

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.

5 Comments

  • I’ve long been interested in data exchange. I’ve touched on this in various ways since the mid-1980s predating the rise of the Internet and things like HTML. I find the lack of a robust data exchange standard in healthcare unconscionable. My background is in the graphic arts industry and I’ve been lucky enough in the past to have worked with companies like Apple and Adobe system. I know that Adobe Systems for example amongst many other companies has proffered data exchange standards for health care that I’m gone nowhere. I also happen to be a physician assistant whose use multiple electronic records including those at the VA. There is nothing simple about records at the VA. I’d be curious to know a bit more about your views of data exchange it whether you have any specific references that particularly interest you. Thanks.

  • Thanks for your comments, John and Steve. I’ve written (and carped) often about data exchange on EMR&EHR, but perhaps my most comprehensive look is part of this article on The Health Care Blog:

    http://thehealthcareblog.com/blog/2015/09/03/the-phonemic-path-a-way-to-measure-health-that-can-lead-to-health-improvement/

    Like John, I’m disappointed by the limited impact of Direct. Perhaps the problem is that it was deliberately limit in scope so it could allow data exchange among technically backward clinicians who have nothing but email online, but to be useful it requires the Web in order to set up and exchange certificates.

    I don’t know how much in a VA record is exposed by Blue Button, but that was their proposed solution to data exchange.

  • John,

    You are correct about comparison between 2011 and 2016. Back then, not too many providers could generate CCDs, and not a single provider was offering CCD through their patient portal. Only people with connection with HIT groups at providers could get a CCD.

    Now, in 2016 things are very different due to meaningful use. Almost all providers can generate a CCD and if they are not offering it to their patients at least it is not because of technical reasons.

    Today, challenges lie with educating patient about its availability of CCD and making it easy for the patients to access it. With ZibdyHealth, if one knows some basic concepts of computer, they can consolidate data in few minutes. We are working on making it even easier.

    Regarding direct vs. HIEs model, I am not sure if it is a fair comparison. There were billions poured into HIEs model but direct model at the best got some tweets from ONC. There are some big concerns with HIE approach which were probably not well thought through in 2011 – privacy and sustainability.

    Privacy is a big concern as the approach used by most HIEs to match variation in patient names and ID is exposing patients to higher risk. In-addition, the business model is a challenge for these HIEs and they are still very much dependent on tax payer dollars.

    These HIEs are now operating as opt-out option but they started with opt-in model. This shows that in spite of billions spent on this model, it is still being forced on patients.

  • Steve,

    ZibdyHealth works flawlessly with VA CCD. One can download BlueButton compliant CCD from VA patient portal, “My Health Vet” and upload into ZibdyHealth with few clicks. VA should be using this approach to share data with outside providers when they send veterans to seek medical help outside VA. Please try it out and let us know. Here are the step-by-step instructions on our website. http://www.zibdy.com/CCDInstructions.aspx

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