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As Patient Engagement Advances, It Raises Questions About Usefulness

Posted on September 26, 2016 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 ( 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.

Reading ONC’s recent summary of patient engagement capabilities at US hospitals left me feeling both hopeful and wistful. The ONC, as usual, is trying to show off how much progress the field of health IT has made since Meaningful Use started, and the statistics in this dashboard meet those goals. On the other hand, I look at the statistics and wonder when real patient empowerment will emerge from these isolated gains.

The ONC dashboard includes information both on raw data exchange–what Meaningful Use called view, download, and transmit (VDT)–and the uses of that data, which ultimately mean much more than exchange.

I considered at first how important I would find it to download hospital information. I certainly would like my doctors to get the results of tests performed there, and other information related to my status upon discharge, but these supposedly are sent to the primary care physician in a Continuity of Care Document (CCD). If I or a close relative of mine had a difficult or chronic condition, I would certainly benefit from VDT because I would have to be an active advocate and would need the documentation. My point here is that our real goal in health reform is coordinated care, rather than data transfer, and while VDT is an important first step, we must always ask who is using that information.

The ONC did not ask the hospitals how much of their data patients can download. God is in the details, and I am not confident that an affirmative answer to the question of downloading data means patients can get everything that is in their records. For instance, my primary care physician has a patient portal running on eClinicalWorks (not his choice, but the choice of the hospital to which he is affiliated). From this portal I can get only a few pieces of information, such as medications (which I happen to know already, since I am taking them) and lab results. Furthermore, I downloaded the CCD and ran it through a checker provided online by the ONC for a lark, and found that it earned D grades for accurate format. This dismal rating suggests that I couldn’t successfully upload the CCD to another doctor’s EHR.

Still, I don’t want to dismiss the successes in the report. VDT is officially enabled in 7 out of 10 hospitals, a 7-fold growth between 2013 and 2015. Although the dashboard laments that “Critical Access, medium, and small hospitals lag,” the lag is not all that bad. And the dashboard also shows advances in the crucial uses of that data, such as submitting amendments to the data

A critical question in evaluating patient engagement is how the Congress and ONC define it. A summary of the new MACRA law lists several aspects of patient engagement measured under the new system:

  • Viewing, downloading, and transmitting, as defined before. As with the later Meaningful Use requirements, MACRO requires EHRs to offer an API, so that downloading can be done automatically.

  • Secure messaging. Many advances in treating chronic conditions depend on regular communications with patients, and messaging is currently the simplest means toward that goal. Some examples of these advances can be found in my article about a health app challenge. Conventional text messaging is all in plain text, and health care messaging must be secure to meet HIPAA requirements.

  • Educational materials. I discount the impact of static educational materials offered to patients with chronic conditions, whether in the form print brochures or online. But educational materials are part of a coordinated care plan.

  • Incorporating patient-generated data. The MACRA requirements “ask providers to incorporate data contributed by the patient from at least one unique patient.” Lucky little bugger. How will he or she leverage this unprecedented advantage?

That last question is really the nub of the patient engagement issue. In Meaningful Use and MACRA, regulators often require a single instance of some important capability, because they know that once the health care provider has gone through the trouble of setting up that capability, extending it to all patients is less difficult. And it’s heartening to see that 37 percent of hospitals allowed patients to submit patient-generated data in 2015.

Before you accept data from a patient, you need extra infrastructure to make the data useful. For instance:

  • You can check for warning signals that call for intervention, such as an elevated glucose level. This capability suggests a background program running through all the data that comes in and flagging such warning signals.

  • You can evaluate device data to see progress or backsliding in the patient’s treatment program. This requires analytics that understand the meaning of the data (and that can handle noise) so as to produce useful reports.

  • You can create a population health program that incorporates the patient-generated data into activities such as monitoring epidemics. This is also a big analytical capability.

Yes, I’m happy we’ve made progress in using data for patient engagement. A lot of other infrastructure also needs to be created so we can benefit from the big investment these advances required.

Interoperability: The High Jump and The Long Jump with ONC’s Doug Fridsma

Posted on March 5, 2013 I Written By

Mandi Bishop is a hardcore health data geek with a Master's in English and a passion for big data analytics, which she brings to her role as Dell Health’s Analytics Solutions Lead. She fell in love with her PCjr at 9 when she learned to program in BASIC. Individual accountability zealot, patient engagement advocate, innovation lover and ceaseless dreamer. Relentless in pursuit of answers to the question: "How do we GET there from here?" More byte-sized commentary on Twitter: @MandiBPro.

I’ll admit, I was incredibly nervous about interviewing Dr. Doug Fridsma, the Chief Science Officer for the Office of the National Coordinator and the face of both the Standards and Interoperability (S&I) Framework and the Federal Health Architecture initiative. Not only do I consider him a key luminary, but his overarching responsibility for the future of interoperability and standards-based programs is incredibly alluring. I swoon over those who have the power and desire to effect meaningful, positive change on a grand scale. I wasn’t disappointed.

Doug explained his philosophy towards fulfilling the promise of interoperability with a sports metaphor: the high jump and the long jump.

“I don’t like high jumps,” he said. “High jumps, if you knock down the bar, you’re done and you get no points. Long jumps, you get points for each increment. The high jump for interoperability is ubiquitous data liquidity. The long jump is Meaningful Use.”

The S&I Framework project is tracking progress towards standardization and standards adoption across 5 areas of Meaningful Use and interoperability:

  1. Meaning – shared vocabularies across continuum of care
  2. Structure of messages shared across continuum of care
  3. Transport of messages
  4. Security of transport and messages
  5. Services for accessing messages

All of these categories are exemplified in the flagship project for Meaningful Use and interoperability: the Automate Blue Button Initiative, affectionately known as ABBI. For those not familiar with ABBI, do an experiment: ask your primary care provider whether you can visit a patient portal and download your medical records by clicking the “Blue Button.” If your PCP can provide you the website link to request the download, you should be able to receive your entire medical record (from that provider) in a vaguely huma-readable format (Excel, Word, PDF, etc.). The medical and clinical jargon may not make a lot of sense; however, it’s certainly an incremental hop in the long jump towards interoperability and standards adoption. The standard vocabularies, structure, transport mechanism, security protocol, and web-enabled access are foundational building blocks which enable the Blue Button program’s adoption.

Doug’s goal with the ABBI program was three-fold: get it OUT there, have providers and patients start USING it, and structure it so that it can be repeatable and scalable. Patient engagement advocates across the Twittersphere applaud the sentiment that we, patients, should have ownership of our health data, and many recognize the ONC’s efforts as instrumental in turning the tide for patient access. Several notable bloggers have covered the ABBI project in detail, analyzing its value to healthcare IT development professionals, providers, and patients, including:
Keith Boone @motorcycle_guy – the ABBI Pitch, with a quick overview of the goals for the program, and humorous insight into providers’ qualms about adoption

Greg Meyer @greg_meyer – Scalable Trust and Trust Bundles, with developer-focused details on the structure and transport categories of interoperability

For the next incremental long jump beyond ABBI and Meaningful Use Stage 2, Doug Fridsma and the ONC have several new initiatives tackling the atomic-level data governance and quality of clinical information. In order to communicate between disparate EHR systems, across multiple facilities and potentially multiple payers, it isn’t just the structure of the container and transport of the message that must be consistent: it’s the individual data elements, themselves, which comprise the meat of the message that must be standardized.

The ONC recently announced the Structured Data Capture Initiative with the goal of creating a technical infrastructure to support “structurally sound” standard data elements with support for “unique semantics”, to capture EHR and supplemental clinical data for use across the continuum of care. This effort officially kicked off the week of HIMSS 2013; its progress will be instrumental in broadening the effectiveness of interoperability and Meaningful Use.

So, as I walk the Interoperability Showcase at HIMSS13, watch the use case demonstrations, and ask the participants the tough questions like, “How are you incorporating the use case development you’re exhibiting here into consideration for your next product full release,” I’ll be taking note of those organizations that seem focused on the next incremental jump towards patient-centric, data-driven healthcare systems. And I’ll be wondering what Doug Fridsma and the ONC will do to get to the next incremental jump on the way to the nirvana of ubiquitous data liquidity.

…I’ll also be kicking myself for not taking the opportunity to get a fan photo with Doug while I had the chance.

What Would ONC’s Dr. Doug Fridsma Do? (THIS Geek Girl’s Guide to HIMSS)

Posted on March 2, 2013 I Written By

Mandi Bishop is a hardcore health data geek with a Master's in English and a passion for big data analytics, which she brings to her role as Dell Health’s Analytics Solutions Lead. She fell in love with her PCjr at 9 when she learned to program in BASIC. Individual accountability zealot, patient engagement advocate, innovation lover and ceaseless dreamer. Relentless in pursuit of answers to the question: "How do we GET there from here?" More byte-sized commentary on Twitter: @MandiBPro.

I know you’ve all been wondering how I’m planning to spend my mad crazy week at HIMSS in New Orleans. Well, maybe not ALL of you, but perhaps at least one – who is most likely my blog boss, the master John Lynn. Given the array of exciting developments in healthcare IT across the spectrum, from mobile and telehealth to wearable vital sign monitoring devices, EMR consolidation to cloud-based analytics platforms, it’s been extraordinarily difficult to keep myself from acting like Dori in “Finding Nemo”: “Oooooh! Shiny!” I’ve had to remind myself daily that I will have an opportunity to play with everything that catches my eye, but that I am only qualified to write and speak intelligently on my particular areas of expertise. And so, I’m proud to say I’ve finally solidified my agenda for the entire week, and I cannot WAIT to go ubergeek fan girl on so many industry luminaries and fascinating up-and-comers making great strides towards interoperability, deriving the “meaning” in “Meaningful Use” from clinical data, and leveraging the power of big data analytics to improve quality of patient experience and outcomes.

On Sunday, I’m setting the stage for the rest of the week with a sit-down with ONC’s Director of Standards and Interoperability and Acting Chief Scientist, Dr. Doug Fridsma. His groundbreaking work in interoperability spans multiple initiatives, including: the Nationwide Health Information Network (NwHIN) and the CONNECT project, as well as the Federal Health Architecture. For insight into his passion for transforming the healthcare system through health IT, check out his blog: From The Desk of the Chief Science Officer.

Through the rest of the week, I aspire to see the world through Dr. Fridsma’s eyes, focusing on how each of the organizations and individuals contribute to the standards-based processes and policies that form the foundation for actionable analytics – and improved health. I’ve selected interviews with key visionaries from companies large and small, who I feel are representative of positive forward movement:

Health Care DataWorks piques my interest as an up-and-comer to watch, empowering healthcare systems to improve outcomes and reduce medical costs by providing accelerated EDW design and implementation, whether on-premise or via SaaS solution. Embedded industry analytics models supporting alternative network models, population-based payment models, and value-based purchasing allow for rapid realization of positive ROI.

Emdeon, is the single largest clinical, financial, and administrative network, connecting over 400,000 providers and executing more than seven billion health exchanges annually. And if that’s not enough to attract keen attention, they recently announced a partnership with Atigeo to provide intelligent analytics solutions with Emdeon’s PETABYTES of data.

Serving an area near and dear to my heart, Clinovations provides healthcare management consulting services to stakeholders at each link in the chain, from providers to payers and supporting trading partners – in areas from EMR implementation (and requisite clinical data standards) to market and vendor assessments, and data management activities throughout. With the dearth in qualified SME resources in the clinical data field, I look forward to learning about how Clinovations plans to manage their growth and retain key talent.

Who doesn’t love a great legacy decommissioning story? Mediquant proports adopting their DataArk product can result in an 80% reduction in legacy system costs through increased interoperability across disparate source systems and consolidated access. The “active archiving” solution allows for a centralized repository and consolidated accounting functions out of legacy data without continuing to operate (and support) the legacy system. Longitudinal clinical records? Yes, please!

Those are just a few on my must-see list, and I think Dr. Doug Fridsma would be proud of their vision, and find alignment to his ONC program goals. But will he be proud of their execution?

Can’t wait to find out, on the exhibit hall floor – and in the hallway conversations, and the client case study sessions, and the general scuttlebutt – at HIMSS!

CCHIT Certification Thoughts

Posted on February 2, 2009 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I just came upon a blog post on the TempDev blog that talks about the expansion of CCHIT certification into a number of new specialty categories. It’s really interesting to look at the list of new categories:

  • Behavioral Health
  • Clinical Research
  • Dermatology
  • Oncology
  • Advanced Interoperability
  • Advanced Quality (in reference to Quality Measures)
  • Advanced Clinical Decision Support
  • Long Term Care
  • OB/GYN

As noted by Ben, these are in addition to the HIE and PHR categories added for 2009. Well, I never back away from a discussion about CCHIT. I just wonder why the Senate hasn’t called me up to a hearing to talk about CCHIT certification. Of course, my friend Al Borges would do much better than I, but I digress.

After reading through Ben’s post about the expansion of CCHIT I had to leave a few of my thoughts on the subject in the comments. I thought most of my readers would find it interesting and so here’s some off the cuff thoughts on CCHIT certification that I left in the comments:

You are dead on when you say that CCHIT is a powerful driver in the EHR marketplace. It’s a really tough decision for EMR companies to decide whether to spend money on CCHIT certification or not. Not because CCHIT certification will make their product any better. The biggest advantage CCHIT certification offers is in your ability to market/sale your EMR system. That fact can’t be argued. It’s just unfortunate that the public isn’t better informed about the meaning of CCHIT certification.

I do think that over time CCHIT certifications will be so old that EMR companies are going to have to avoid the discussion of with CCHIT certification year they have or something like that. This will lead to consumers being unhappy with the process and lead to more troubles in the future.

The problem is that CCHIT hasn’t create a sustainable certification model for most EHR companies. I even hear that CCHIT might not have a sustainable certification model themselves despite their incredibly high rates for certification. At least that was what I read when I heard that CCHIT was going back to the government for more funding.

I still think the biggest problem is that most people see certification as a strong indicator of whether the EMR is usable or not, but CCHIT doesn’t test that at all. I’m considering some options to measure that and even possibly pursuing a PhD in health informatics where I’d like to study the subject. We’ll see.

It will be interesting to see how many specialties actually certify in these categories. My guess is that it will be the same Jabba the Hut EMRs (my term) that did the original CCHIT certification.

I guess you know where I stand on this issue.

Watch for more discussion about CCHIT, because I think it’s important to share my views on the subject considering it could be a major part of what I call the Obama EMR stimulus package.