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Ignoring the Obvious: Major Health IT Organizations Put Aside Patients

Posted on November 18, 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 (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.

Frustrated stories from patients as well as health care providers repeatedly underline the importance of making a seismic shift in the storage and control of patient data. The current system leads to inaccessible records, patients who reach nursing homes or other treatment centers without information crucial to their care, excess radiation from repeated tests, massive data breaches that compromise thousands of patients at a time, and–most notably for quality–patients excluded from planning their own care.

A simple solution became available over the past 25 years with the widespread adoption of the Web, and has been rendered even easier by modern Software as a Service (SaaS): storing the entire record over the patient’s lifetime with the patient. This was unfeasible in the age of patient records, but is currently efficient, secure, and easy to manage. The only reason we didn’t switch to personal records years ago is the greed and bad faith of the health care institutions: keeping hold of the data allows them to exploit it in order to market treatments to patients that they don’t need, while hampering the ability of other institutions to recruit and treat patients.

So I wonder how the American Health Information Management Association (AHIMA) can’t feel ridiculous, if not a bit seamy, by releasing a 3000-word report on the patient data crisis this past October without even a hint at the solution. On the contrary: using words designed to protect the privileges of the health care provider, they call this crisis a “patient matching” problem. The very terminology sets in stone the current practice of scattering health records among providers, with the assumption that selective records will be recombined for particular treatment purposes–if those records can be found.

A reading of their report reveals that the crisis outpaces the tepid remedies suggested by conventional institutions. In a survey, institutions admitted that up to eight percent of their patients have duplicate records in the institutions own systems (six percent of the survey respondents reported this high figure). Institutions also report spending large efforts on mitigating the problems of duplicate records: 47 percent do so during patient registration, and 72 percent run efforts on a weekly basis. AHIMA didn’t even ask about the problems caused by lack of access to records from other providers.

To pretend they are addressing the problem without actually offering the solution, AHIMA issues some rather bizarre recommendations. Along with extending the same processes currently in use, they suggest using biometrics such as fingerprints or retinal scans. This has a worrisome impact on patient privacy–it puts out more and more information that is indelibly linked to persons and that can be used to track those persons. What are the implications of such recommendations in the current environment, which features not only targeted system intrusions by international criminal organizations, but the unaccountable transfer of data by those authorized to collect it? We should strenuously oppose the collection of unnecessary personal information. But it makes sense for a professional organization to seek a solution that leads to the installation of more equipment, requires more specialized staff, tightens their control over individuals, and raises health care costs.

There’s nothing wrong with certain modest suggestions in the AHIMA report. Standardizing the registration process and following the basic information practices they recommend (compliance with regulations, etc.) should be in place at any professional institution. But none of that will bring together the records doctors and other health care professionals need to deliver care.

Years ago, Microsoft HealthVault and Google Health tried to bring patient control into the mainstream. Neither caught on, because the time was not right. A major barrier to adoption was resistance by health care providers, who (together with the vendors of their electronic health records) disallowed patients from downloading provider data. The Department of Veterans Affairs Blue Button won fans in both the veterans’ community and a few other institutions (for instance, Kaiser Permanente supported it) but turned out to be an imperfect standard and was never integrated into a true patient-centered health system.

But cracks in the current system are appearing as health care providers are shoved toward fee-for-value systems. Technologies are also coalescing around personal records. Notably, the open source HIE of One project, described in another article, employs standard security and authentication protocols to give patients control over what data gets sent out and who receives it.

Patient control, not patient “matching,” is the future of health care. The patient will ensure that her doctors and any legitimate researchers get access to data. Certainly, there are serious issues left, such as data management for patients who have trouble with the technical side of the storage systems, and informed consent protocols that give researchers maximum opportunities for deriving beneficial insights from patient data. But the current system isn’t working for doctors or researchers any better than it is for patients. A strong personal health record system will advance us in all areas of health care.

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 (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.

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.

E-Patient Update: Using Digital Health For Collaborative Medication Management

Posted on June 1, 2016 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

Recently, I had a medical visit which brought home the gap between how doctors and patients approach to medications. While the physician and his staff seemed focused on updating a checklist of meds, I wanted med education and a chance to ask in-depth self-management questions. And though digital health tools and services could help me achieve these goals, they didn’t seem to be on the medical group’s radar.

At this visit, as I waited to see the doctor, a nurse entered with a laptop on a cart. Consulting her screen, she read off my medication list and item by item, asked me to confirm whether I took the given medication. Then, she asked me to supply the name and dosage of any drugs that weren’t included on the list. Given that I have a few chronic conditions, and take as many as a dozen meds a day, this was an awkward exercise. But I complied as best I could. When a physician saw me later, we discussed only the medication he planned to add to the mix.

While I felt quite comfortable with both the nurse and doctor, I wasn’t satisfied with the way the medication list update was handled. At best, the process was clumsy, and at worst, it might have passed over important information on drug history, interactions and compliance. Also, at least for me, discussing medications was difficult without being able to see the list.

But at least in theory, digital health technology could go a long way toward addressing these issues. For example:

  • If one is available, the practice could use a medication management app which syncs with the EMR it uses. That way, clinicians could see my updates and ask questions as appropriate.
  • Alternatively, the patient should have the opportunity to review their medication list while waiting to be seen, perhaps by using a specialized patient login for an EMR portal. This could be done using a laptop or tablet on a cart similar to what clinicians use.
  • When reviewing their medication list, patients could select medications about which they have questions, delete medications they no longer take and enter meds they’ve started since their last visit.
  • At least for complex cases, patients should have an opportunity to do a telehealth consult with a pharmacist if requested. This would be especially helpful prior to adding new drugs to a patient’s regimen. (I don’t know if such services exist but my interest in them stands.)

To me, using digital health options to help patients manage their meds makes tremendous sense. Now that such tools are available, physicians can loop patients into the med management discussion without having to spend a lot of extra time or money. What’s more, collaboration helps patients manage their own care more effectively over the long term, which will be critical under value-based care. But it may not be easy to convince them that this is a good idea.

Unfortunately, many physicians see sharing any form of patient data as a loss of control. After all, in the past a chart was for doctors, not patients, and in my experience, that dynamic has carried over into the digital world. I have struggled against this — in part by simply asking to look at the EMR screen — but my sense is that many clinicians are afraid I’ll see something untoward, misinterpret a data point or engage in some other form of mischief.

Still, I have vowed to take better control of my medications, and I’m going to ask every physician that treats me to consider digital med management tools. I need them to know that this is what I need. Let’s see if I get anywhere!

Patient Safety and EHR’s: Q&A with Two Companies Striving to Make a Difference – Breakaway Thinking

Posted on July 15, 2015 I Written By

The following is a guest blog post by Lori Balstad, Learning and Development Specialist at The Breakaway Group (A Xerox Company). Check out all of the blog posts in the Breakaway Thinking series.
Lori Balstad
While electronic health records (EHRs) have been in existence since the late 1960s, it wasn’t until almost 30 years later that the Institute of Medicine (IOM) concluded that healthcare would be safer with computerized physician order entry, estimating that 100,000 Americans die each year from preventable adverse events. Now in 2015, most have heard the frightening number of deaths per year due to medical errors—400,000—or more than 1,000 lost lives in the U.S. every day. Preventable medical errors cause the third most deaths in the U.S., right after heart disease and cancer. With many organizations either upgrading old systems or making the decision on their first EHR, it is critical that patient safety is the ultimate goal.

Enter two companies striving towards this goal on both sides of the process:  The Breakaway Group and Sociotechnologix.

The Breakaway Group, A Xerox Company, is committed to ensuring healthcare organizations gain value from technology.   Our innovative approach using “flight simulators” allows users to practice new workflows and reinforce the handoffs required to achieve the quality and safety outcomes they expect. Our research-based solution expedites end-user adoption of new technologies and using the EHR system to its full potential.  This results in fewer errors, and a higher level of care.  Healthcare professionals adopt new applications faster, giving back critical time for providers to do what they do best – care for patients.

Sociotechnologix works to help healthcare organizations understand the influence of culture and leadership on safety and quality of care.  The implementation of technology can create significant patient risk when not used correctly or when system issues are ignored post go-live.  Sociotechnologix uses a validated assessment to measure HIT safety.  This focus on organizational culture drives organizations to integrate quality initiatives into every aspect of care.  They recently launched a tool that allows providers to quickly and easily identify patient safety risks in their EHR.  The application called SafeHIT, provides detailed analytics on the safety, usability, and workflow, from the perspective of clinicians to prioritize safety issues. As sighted by Westat in a report for The Office of the National Coordinator for Health IT (ONC), “Examining health IT incidents within the context of the socio-technical model enables organizations to look beyond the incident to understand it in the context of the people who use the system and the other technologies and processes affected by health IT. Understanding these interactions enables high-reliability organizations to make improvements to their health IT systems when flaws in the systems are identified that can lead to patient harm.”


In the following Q&A, we discuss how EHRs impact patient safety and how each company hopes to improve it. The individuals interviewed from each company are Dr. Heather Haugen, CEO and Managing Director of The Breakaway Group, and Dr. Michael Woods, a Principal of Sociotechnologix, LLC.

Question #1: How must healthcare change to ensure proper use of EHRs for improved safety?

Heather: We must move beyond an implementation mindset.  The hard work begins when the technology is installed.  An EHR is simply one tool we can use to improve care processes.  It requires clinical leadership and a long term commitment to achieve the promise of the EHR- improved quality and safety.

Michael: No one would give their child a medication the FDA had not approved as safe and effective, yet we don’t think twice about having our child cared for in a hospital that has implemented an EHR whose safety and efficacy for patients (and users) hasn’t been systematically demonstrated. Clinical leaders and their organizations will not be able to optimize quality and patient safety without committing to a structured methodology to capture, track, and fix the EHR safety, usability, and workflow issues encountered daily on the frontline of care.

Question #2: Can you share examples of how your company helps improve patient safety?

Heather: We are witnessing a unique time in healthcare.  Healthcare leaders face an increasing number of competing priorities with fewer resources every year.  If we continue to quickly push more technology into clinical care processes without ensuring users are proficient, we will experience an increase in errors and negative impact on quality and safety.  By mimicking the clinical environment, we can easily assess end user proficiency in their actual workflow before they use the live system.  These clinicians are less likely to make an error and learn the system faster.  Giving clinicians time back to focus on the patient and properly use the tools results in safer care.

Michael: We use a sociotechnical approach to assess an organization’s overall patient safety. HIT is one of three components in our model, but it has profound impact on the other two, culture and process. In consulting to a number of organizations, we consistently found EHRs leave frontline caregivers frustrated, cognitively burdened (culture), and forcing workarounds (processes) to the EHR to ensure their patients aren’t harmed. We’ve never heard a frontline caregiver say, “Gosh, our HIT system is just so awesome — it’s so intuitive, easy to use, and safe for our patients.” On the other side of the fence, our data tells us our information technology (IT) colleagues are paralyzed by the sheer volume of (legitimate) frontline complaints (“tickets”), often with no way to categorize, prioritize, and track what issues are creating real safety risks, or which HIT usability issue is costing 10’s or even 100’s of thousands of dollars per year in lost efficiency. It’s for these reasons we created SafeHIT™, a mobile, SaaS-based application for real-time, frontline reporting and advanced analytics of HIT safety, usability, & workflow issues. SafeHIT brings the clinical and IT folks together collaboratively to solve HIT problems, leveraging in-App, bi-directional, highly secure communication.

Question #3: How can companies like The Breakaway Group and Sociotechnologix work together to improve patient safety?

Heather: Both organizations are passionate about improving patient safety through research-based solutions.  We understand patient safety is a complex issue that must be addressed from multiple touch points in the organization.  By pairing our solutions, an organization can address safety across the care continuum – from the leadership culture of safety to how providers use technology to deliver the highest quality of care.

Michael: Heather is spot-on. Sociotechnologix talks about EHR ROS – return on safety – an EHR system that actually helps the entire sociotechnical environment (culture, processes, and technology) be safer. Combining the methodologies and data streams from The Breakaway Group and Sociotechnologix creates a truly unique — and frankly, for the first time — complete approach to not just the initial EHR implementation, but ongoing and sustained EHR proficiency, safety, usability, and workflow optimization, while stopping the pandemic, ongoing lost efficiency costs associated with sub-optimal adoption and usability.


Many government organizations and institutions have also recognized the need to evaluate health IT’s role in patient safety over the last few years. The ONC has funded numerous reports and projects for this very reason and holds meetings with the Agency for Healthcare Research and Quality (AHRQ) to coordinate health IT and patient safety.  AHRQ has recently awarded $4 million in new research grants to improve the safety of health IT. More information can be found at healthit.ahrq.gov.

Focusing on processes to ensure better use of health IT, from the true adoption of applications to how they are being used in real time and what issues arise, will make us all safer and provide a better patient experience. The right intentions have been there for 50 years.  We’ve had successes and growth, and are getting better at defining the needs of patients, providers, and organizations to reach the ultimate goal of safety.

Xerox is a sponsor of the Breakaway Thinking series of blog posts. The Breakaway Group is a leader in EHR and Health IT training.

Interoperability of Electronic Health Records– Benefits and Opportunities – Breakaway Thinking

Posted on June 17, 2015 I Written By

The following is a guest blog post by Jennifer Bergeron, Learning and Development Manager at The Breakaway Group (A Xerox Company). Check out all of the blog posts in the Breakaway Thinking series.
Jennifer Bergeron
Electronic health records (EHR) aim to improve healthcare and processes for providers and patients on a number of fronts. In an ideal situation according to HealthIT.gov, the clinician benefits by having quick access to patient records and alerts, the ability to quickly and accurately report, and a path to safer prescribing. Patients should be able to spend less time filling out duplicative forms at clinics, have prescriptions sent automatically to pharmacies, and gain easier access to specialist referrals.

The International Journal of Innovation and Applied Studies points out that interoperability can work toward a resolution to several current problems including patient record accessibility and consolidation, and healthcare costs. As far as getting patient information and all available information when it’s needed, the report “estimated that 18% of medical errors that result in an adverse drug event were due to inadequate availability of patients’ information.” Healthcare costs are reduced when different entities can share and communicate common data and could save up to $77.8 billion annually.

Given the potential benefits, there are still opportunities to achieve interoperability. For example, not all healthcare organizations are using EHRs so data isn’t being collected consistently across the board. In 2014 there was an increase in the percentage of hospitals with EHRs. However, only 39% of physicians reported that they share data with other providers. Even though the data is available to share, some EHR users may still be living in a silo and haven’t reached full adoption. In addition, existing specification standards have not promoted interoperability. Even though there is data is available to share, few providers are tapping into that information.

To help increase data sharing, more attention is being paid to FHIR, or Fast Healthcare Interoperability Resources. FHIR stems from HL7 (Health Level Seven) data exchange and information modeling standards. HL7 has been around since 1987 to develop families of standards used to automate healthcare data sharing with the goal to improve patient care. FHIR builds upon the interoperability uses of HL7 and takes into consideration the changes in technology and requirements. According to the Office of the National Coordinator for Health Information Technology (ONC), FHIR is used to enable data access, is used as the container to return query results, and will be used to build necessary security and privacy controls.

FHIR combines what are called “resources” — also known as an instance of data – that define data and are used for specific content. Within a resource are characteristics including “a common way to define and represent them, building them from data types that define common reusable patterns of elements, a common set of metadata, and a human readable part.” Collected data can be used and exchanged, searched for individually or in groupings, analyzed and examined.

Interoperability and the role of FHIR is not yet clearly defined. Going forward, the roadmap for interoperability built by the ONC will be watched closely. Guidelines are broad at this point to allow appropriate decision-making as paths are forged. A group of organizations called the Argonaut Project has committed to working with FHIR. HI7.org defines the Argonaut Project as having the purpose of developing “a first-generation API (application programming interface) and Core Data Services specification to enable expanded information sharing for electronic health records, documents, and other health information based on the FHIR specification.”

APIs are at work behind the scenes when we’re accessing information online. Although healthcare is beginning to harness the power of APIs these interfaces are present everywhere in our day-to-day lives. For example, say you are listening to Spotify and want to connect that application with Facebook. An API helps make that translation of information from Spotify to Facebook happen.  Imagine the possibilities in the realm of data and healthcare. The development of APIs by the Argonaut Project is just the beginning stages of data sharing and interoperability.

In order to reach true interoperability and efficient use of FHIR, the first step is EHR adoption. Once data is captured into an EHR system, organizations can focus on data standards and clear data management, and have the ability to measure impacts to healthcare patients, providers, costs, and communication. Without the right, accurate data input, interpretation at the end of the process is not accurate or actionable. If clinicians are aware of how their engagement with data and proper input at the beginning of this process affects their practice, their patient’s experience and health, and healthcare on a broad spectrum, they can make a difference well into the future.

Xerox is a sponsor of the Breakaway Thinking series of blog posts. The Breakaway Group is a leader in EHR and Health IT training.

Healthcare Applies Innovation from Other Industries for Big Impact – Breakaway Thinking

Posted on March 18, 2015 I Written By

The following is a guest blog post by Jennifer Bergeron, Learning and Development Manager at The Breakaway Group (A Xerox Company). Check out all of the blog posts in the Breakaway Thinking series.
Jennifer Bergeron

Healthcare is applying innovations from other industries to make advancements in the study of disease, surgery, and research. If you’re fascinated by new ways to use everyday tools and at the same time make life easier, also known as lifehacks, you can appreciate the same concept in healthcare.

3D imaging, cellphone camera technology, and sonograms like those used in underwater navigation are all being used in healthcare. Let’s begin with a look at cellphone technology and one way it is being applied to healthcare.

UCLA researchers developed a lens-free microscope that, through a series of steps, allows tissue samples to be formed into a 3D image using a microchip that is the same type found in your cellphone camera. The image shows contrast so the researcher can see tissue depth. This lens-free microscope also offers a broader, clearer view than conventional microscopes. The result is that “the pathologist’s diagnosis using the lens-free microscopic images proved accurate 99% of the time”, according to a recent study.   In order to apply this same concept to disease, imagine that a researcher could isolate a section of diseased tissue, remove it from its environment, color code the tissue to easily spot abnormalities, and have the ability to study it from all angles.

Techradar.com reminds us that lasers, used in missile defense, in the world’s fastest camera (which takes 6.1 million pictures per second), in entertainment devices such as Blu-ray players, and in grocery check-out lines, are also used in surgery and diagnoses. Lasers can decrease the diagnosis time and cause less disruption to a patient’s comfort. Zero-dilation Scanning Laser Opthmalogy (cSLO), a new imaging technique, can diagnose a patient with diabetic retinopathy, which causes progressive damage to the retina, in as little as 3 minutes.

Technology is not only impacting the patient experience, but how caregivers are brought up to speed on new technologies. In fact, the founder of The Breakaway Group based the company’s electronic health record (EHR) learning concept on flight simulation. Flight simulators train pilots how to maneuver in extreme circumstances, situations that would be difficult to create in real life. At The Breakaway Group, we use simulation technology to increase adoption of EHRs by training providers, nurses, and healthcare professionals.

Speed to proficiency, one of four key adoption elements of The Breakaway Method, provides learners with real-life situations in a safe environment.  Learners can quickly experience many different circumstances, fail, and learn to complete tasks correctly, all without affecting patient outcomes. In addition, The Breakaway Group can cut classroom time in half on average by using simulations.

Healthcare is reaching into other industries to become more efficient and effective. Whenever information is shared and innovations are repurposed to make a process better, we all benefit.

Xerox is a sponsor of the Breakaway Thinking series of blog posts. The Breakaway Group is a leader in EHR and Health IT training.

Measuring Steps to Patient Empowerment – Breakaway Thinking

Posted on November 19, 2014 I Written By

The following is a guest blog post by Jennifer Bergeron, Learning and Development Manager at The Breakaway Group (A Xerox Company). Check out all of the blog posts in the Breakaway Thinking series.
Jennifer Bergeron

Trends and fads come and go. When they stick, it’s clear they address a consumer need, whether it’s a service, promise, or hope. Here at The Breakaway Group, A Xerox Company (TBG), we operate within a proven methodology that includes metrics, and it’s exciting to those of us who can’t get enough of good data. Most people find metrics interesting, especially when they understand how it relates to them, and the results are something they can control. Metrics are powerful.

To understand the power of data in shaping behaviors, consider the popularity of the self-monitoring fitness tracker or wearable technology. Even as their accuracy is scrutinized, sales in 2014 are predicted to land somewhere in the $14 billion range.1 Do mobile fitness trackers actually help people change their activity habits? Could doctors actually use the data to help their patients? Can companies be built on the concept of improving health with a wearable device? Not conclusively.2 Does a dedicated athlete need this kind of information? Some think not.3

So what is driving the growth of the fitness tracker market and what are these devices offering that creates millions of dedicated users? The answer is real-time data, personalized goals and feedback, and a sense of control; in other words, empowerment.

In the 70s and 80s, my grandparents spoke about their doctor as though he were infallible. They didn’t doubt, question, or even note what he prescribed, but took his advice and dealt with the outcomes. If healing didn’t progress as planned, my grandmother blamed herself, as though she’d failed him.

Jump ahead a few decades when more emphasis is being placed on collaboration. We expect our physicians to work with us, rather than dictate our treatment decisions.4 Section 3506 of the Affordable Care Act, the Program to Facilitate Shared Decision Making, states that the U.S. Department of Health and Human Services is “required to establish a program that develops, tests and disseminates certificated patient decision aids.”5 The intent is to provide patients and caregivers educational materials that will help improve communication about treatment options and decisions.6

Patient portals are important tools in helping to build this foundation of shared information. The portals house and track patient health data on web-based platforms, enabling patients and physicians to easily collaborate on the patient’s health management.7  Use of patient portals is a Meaningful Use Stage 2 objective.

The first measure of meeting this objective states that more than half the patients seen during a specified Electronic Health Record reporting period must have online access to their records. The second measure puts the spotlight on the patient and their use of that web-based information. MU Stage 2 requires that more than 5% of a provider’s patients must have viewed, downloaded, or transmitted their information to another provider in order for the provider to qualify for financial incentives from the Federal government.8

Empowered consumers want information immediately, whether it’s a restaurant review, number of steps taken in the last hour, how many calories they’ve burned, or their most recent checkup results. We like to weigh the input, make a decision, and then take action. Learning and information intake, no matter the topic, is expected to happen fast.

Metrics show us where we stand and how far we’ve come, which empowers us to keep going or make a change, and then measure again. We’re in an age of wanting to know but also wanting to know what to do next. The wearable device market has met a very real need of consumers. Whether or not fitness trackers make us healthier, whether or not our doctors know what to do with the information, or if this is information an athlete would really use, these devices can serve the purpose of putting many people in control of their own health, one measurable step at a time.

Sources:
1 Harrop, D., Das, R., & Chansin G. (2014) . Wearable technology 2014-2024: Technologies, markets, forecasts. Retrieved from http://www.idtechex.com/research/reports/wearable-technology-2014-2024-technologies-markets-forecasts-000379.asp

2 Hixon, T. (2014) . Are health and fitness wearables running out of gas? Retrieved from  http://www.forbes.com/sites/toddhixon/2014/04/24/are-health-and-fitness-wearables-running-out-of-gas/

3 Real athletes don’t need wearable tech. (2014) . Retrieved from http://www.outsideonline.com/outdoor-gear/gear-shed/tech-talk/Real-Athletes-Dont-Need-Wearable-Tech.html

4 Chen, P. (2012) . Afraid to speak up at the doctor’s office. Retrieved from  http://well.blogs.nytimes.com/2012/05/31/afraid-to-speak-up-at-the-doctors-office/?_r=0

5 Informed Medical Decisions Foundation. (2011-2014) .  Affordable care act. Retrieved from http://www.informedmedicaldecisions.org/shared-decision-making-policy/federal-legislation/affordable-care-act/

6 HealthcareITNews. (2014) . Patient pjortals. Retrieved from http://www.healthcareitnews.com/directory/patient-portals

7 Bajarin, T. (2014) . Where wearable health gadgets are headed. Retrieved from http://time.com/2938202/health-fitness-gadgets/

8 HealthIT.gov. (2014) . Patient ability to electronically view, download & transmit (VDT) health information. Retrieved from http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information

Xerox is a sponsor of the Breakaway Thinking series of blog posts. The Breakaway Group is a leader in EHR and Health IT training.

Eyes Wide Shut – Patient Engagement Pitfalls Prior to Meaningful Use Reporting Period

Posted on June 30, 2014 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.

July 1, 2015 – the start of the Meaningful Use Stage 1 Year 2 reporting period for the hospital facilities within this provider integrated delivery network (IDN). The day the 50% online access measure gets real. The day the inpatient summary CCDA MUST be made available online within 36 hours of discharge. The day we must overcome a steady 65% patient portal decline rate.

A quick recap for those who haven’t followed this series (and refresher for those who have): this IDN has multiple hospital facilities, primary care, and specialty practices, on disparate EMRs, all connecting to an HIE and one enterprise patient portal. There are 8 primary EMRs and more than 20 distinct patient identification (MRN) pools. And many entities within this IDN are attempting to attest to Meaningful Use Stage 2 this year.

For the purposes of this post, I’m ignoring CMS and the ONC’s new proposed rule that would, if adopted, allow entities to attest to Meaningful Use Stage 1 OR 2 measures, using 2011 OR 2014 CEHRT (or some combination thereof). Even if the proposed rule were sensible, it came too late for the hospitals which must start their reporting period in the third calendar quarter of 2014 in order to complete before the start of the fiscal year on October 1. For this IDN, the proposed rule isn’t changing anything.

Believe me, I would have welcomed change.

The purpose of the so-called “patient engagement” core measures is just that: engage patients in their healthcare, and liberate the data so that patients are empowered to have meaningful conversations with their providers, and to make informed health decisions. The intent is a good one. The result of releasing the EMR’s compilation of chart data to recently-discharged patients may not be.

I answered the phone on a Saturday, while standing in the middle of a shopping mall with my 12 year-old daughter, to discover a distraught man and one of my help desk representatives on the line. The man’s wife had been recently released from the hospital; they had been provided patient portal access to receive and review her records, and they were bewildered by the information given. The medications listed on the document were not the same as those his wife regularly takes, the lab section did not have any context provided for why the tests were ordered or what the results mean, there were a number of lab results missing that he knew had been performed, and the problems list did not seem to have any correlation to the diagnoses provided for the encounter.

Just the kind of call an IT geek wants to receive.

How do you explain to an 84 year-old man that his wife’s inpatient summary record contains only a snapshot of the information that was captured during that specific hospital encounter, by resources at each point in the patient experience, with widely-varied roles and educational backgrounds, with varied attention to detail, and only a vague awareness of how that information would then be pulled together and presented by technology that was built to meet the bare minimum standards for perfect-world test scenarios required by government mandates?

How do you tell him that the lab results are only what was available at time of discharge, not the pathology reports that had to be sent out for analysis and would not come back in time to meet the 36-hour deadline?

How do you tell him that the reasons there are so many discrepancies between what he sees on the document and what is available on the full chart are data entry errors, new workflow processes that have not yet been widely adopted by each member of the care team, and technical differences between EMRs in the interpretation of the IHE’s XML standards for how these CCDA documents were to be created?

EMR vendors have responded to that last question with, “If you use our tethered portal, you won’t have that problem. Our portal can present the data from our CCDA just fine.” But this doesn’t take into account the patient experience. As a consumer, I ask you: would you use online banking if you had to sign on to a different website, with a different username and password, for each account within the same bank? Why should it be acceptable for managing health information online to be less convenient than managing financial information?

How do hospital clinical and IT staff navigate this increasingly-frequent scenario that is occurring: explaining the data that patients now see?

I’m working hard to establish a clear delineation between answering technical and clinical questions, because I am not – by any stretch of the imagination – a clinician. I can explain deviations in the records presentation, I can explain the data that is and is not available – and why (which is NOT generally well-received), and I can explain the logical processes for patients to get their clinical questions answered.

Solving the other half of this equation – clinicians who understand the technical nuances which have become patient-facing, and who incorporate that knowledge into regular patient engagement to insure patients understand the limitations of their newly-liberated data – proves more challenging. In order to engage patients in the way the CMS Meaningful Use program mandates, have we effectively created a new hybrid role requirement for our healthcare providers?

And what fresh new hell have we created for some patients who seek wisdom from all this information they’ve been given?

Caveat – if you’re reading this, it’s likely you’re not the kind of patient who needs much explaining. You’re likely to do your own research on the data that’s presented on your CCDA outputs, and you have the context of the entire Meaningful Use initiative to understand why information is presented the way it is. But think – can your grandma read it and understand it on HER own?

Another View of Privacy by Dr. Deborah C. Peel, MD

Posted on June 25, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com 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 InfluentialNetworks.com and Physia.com. 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 thought the following TEDx video from Deborah C. Peel, MD, Founder and Chair of Patient Privacy Rights, would be an interesting contrast with some of the things that Andy Oram wrote in yesterday’s post titled “Not So Open: Redefining Goals for Sharing Health Data in Research“. Dr. Peel is incredibly passionate about protecting patient’s privacy and is working hard on that goal.

Dr. Peel is also trying to kick off a hashtag called #MyHealthDataIsMine. What do you think of the “hidden privacy and data breaches” that Dr. Peel talks about in the video? I look forward to hearing your thoughts on it.

Is Your EMR Compromising Patient Privacy?

Posted on November 20, 2013 I Written By

James Ritchie is a freelance writer with a focus on health care. His experience includes eight years as a staff writer with the Cincinnati Business Courier, part of the American City Business Journals network. Twitter @HCwriterJames.

Two prominent physicians this week pointed out a basic but, in the era of information as a commodity, sometimes overlooked truth about EMRs: They increase the number of people with access to your medical data thousands of times over.

Dr. Mary Jane Minkin said in a Wall Street Journal video panel on EMR and privacy that she dropped out of the Yale Medical Group and Medicare because she didn’t want her patients’ information to be part of an EMR.

She gave an example of why: Minkin, a gynecologist, once treated a patient for decreased libido. When the patient later visited a dermatologist in the Yale system, that sensitive bit of history appeared on a summary printout.

“She was outraged,” she told Journal reporter Melinda Beck. “She felt horrible that this dermatologist would know about her problem. She called us enraged for 10 or 15 minutes.”

Dr. Deborah Peel, an Austin psychiatrist and founder of the nonprofit group Patient Privacy Rights, said she’s concerned about the number of employees, vendors and others who can see patient records. Peel is a well-known privacy advocate but has been accused by some health IT leaders of scaremongering.

“What patients should be worried about is that they don’t have any control over the information,” she said. “It’s very different from the paper age where you knew where your records were. They were finite records and one person could look at them at a time.”

She added: “The kind of change in the number of people who can see and use your records is almost uncountable.”

Peel said the lack of privacy causes people to delay or avoid treatment for conditions such as cancer, depression and sexually transmitted infections.

But Dr. James Salwitz, a medical oncologist in New Jersey, said on the panel that the benefits of EMR, including greater coordination of care and reduced likelihood of medical errors, outweigh any risks.

The privacy debate doesn’t have clear answers. Paper records are, of course, not immune to being lost, stolen or mishandled.

In the case of Minkin’s patient, protests aside, it’s reasonable for each physician involved in her care to have access to the complete record. While she might not think certain parts of her history are relevant to particular doctors, spotting non-obvious connections is an astute clinician’s job. At any rate, even without an EMR, the same information might just as easily have landed with the dermatologist via fax.

That said, privacy advocates have legitimate concerns. Since it’s doubtful that healthcare will go back to paper, the best approach is to improve EMR technology and the procedures that go with it.

Plenty of work is underway.

For example, at the University of Texas at Arlington, researchers are leading a National Science Foundation project to keep healthcare data secure while ensuring that the anonymous records can be used for secondary analysis. They hope to produce groundbreaking algorithms and tools for identifying privacy leaks.

“It’s a fine line we’re walking,” Heng Huang, an associate professor at UT’s Arlington Computer Science & Engineering Department, said in a press release this month “We’re trying to preserve and protect sensitive data, but at the same time we’re trying to allow pertinent information to be read.”

When it comes to balancing technology with patient privacy, healthcare professionals will be walking a fine line for some time to come.