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Human Centered Design in Healthcare #askpatients – #HITsm Chat Topic

Posted on September 18, 2018 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.

We’re excited to share the topic and questions for this week’s #HITsm chat happening Friday, 9/21 at Noon ET (9 AM PT). This week’s chat will be hosted by Jen Horonjeff (@jhoronjeff) from @Savvy_Coop on the topic of “Human Centered Design in Healthcare #askpatients“.

I, Jen Horonjeff, have a confession – I’m one of the dreaded “non-compliant” patients you hear about. I have been living with juvenile arthritis and other autoimmune diseases for 33 years, so I often have a complex treatment plan. One of my biggest offenses is I don’t get my blood work done every four weeks, which is the regularity for which my doctor has ordered my labs.

I don’t have a fear of needles, it’s also relatively quick to drop into the lab and do, so why don’t I do it?

Because every time I do, the system fails me. The lab inevitably sends me a bill for an exorbitant amount of money claiming my insurance won’t cover it. That’s incorrect, they will, it’s just been billed incorrectly. Yet it’s up to me as a patient to sit on the phone for hours with the lab, the insurance company, my doctor’s office, and probably a friend to vent about it…again.

Healthcare, its systems, products and services, are supposed to improve the lives of patients and families, not create more headaches. But the problem is, until recently, no one really ever asked the patients what they were going through, what mattered to them, or their input how to fix it. Patients have been the recipients of the systems we develop, rather than the co-creators.

This is where human-centered design comes in. Human-centered design is about taking the time to #askpatients and design solutions to fit them, rather than continually have them navigate systems and tools that, at times, feel like a cruel joke. I’m not a bad patient because I don’t get my labs done. I am just exhausted by a system that did not incorporate proper human-centered design.

We all have a role to play to improve this. After a lifetime of stumbling through the healthcare system, I decided to do something about it and started Savvy Cooperative. Savvy is a patient-owned co-op that provides a marketplace for patient insights. Our goal is to make it so easy to connect and work with patients and healthcare consumers there is no excuse not to. I believe the future of healthcare is co-designed with patients.

As you go about your work or interface with the healthcare system, I hope you’ll be on the lookout for all the hoops patients jump through and think, “did anyone #askpatients about this?”

If you need examples where lack of human-centered design affects patients, check out some of our #MessedUpPtExp videos, featuring our friendly Savvy Puppets. Then, join us for this week’s #HITsm chat where we’ll discuss it in further detail.

Topics for this week’s #HITsm Chat:
Ice Breaker: We’ve got a Spotify playlist going of song titles that describe the current state of healthcare – what would you add to our #HealthcareSoundtrack? #HITsm

T1: Everyone has one, what’s one of the messed up patient experiences you’ve personally gone through or heard someone else go through that showed lack of human-centered design? #HITsm

T2: How can technology help to ease these headaches and improve the patient experience, rather than make it worse (feel free to use responses from T1 for inspiration!)? #HITsm

T3: Do you think patients can bring unique and valuable perspectives to the table that can make these technologies even better, and how so? #HITsm

T4: Let’s lay it out there, what are the reasons you have heard for why people or companies don’t work more directly with patients? #HITsm

T5: Some of the big consumer brands have mastered the user experience, but what do they need to do to truly improve the patient experience? #HITsm

Bonus: Who are some of the companies or individuals you feel are winning at human-centered design in healthcare, and what are they doing to show that? #HITsm

Upcoming #HITsm Chat Schedule
9/28 – How Does Interoperability Affect Technology Adoption in Healthcare?
Hosted by Niko Skievaski @niko_ski from @redox

10/5 – Medication Compliance & Drug Monitoring
Hosted by Joy Rios (@askjoyrios) and Robin Roberts (@rrobertsehealth)

10/12 – TBD
Hosted by Janet Kennedy (@getsocialhealth) and Carol Bush (@TheSocialNurse) from the Healthcare Marketing Network

We look forward to learning from the #HITsm community! As always, let us know if you’d like to host a future #HITsm chat or if you know someone you think we should invite to host.

If you’re searching for the latest #HITsm chat, you can always find the latest #HITsm chat and schedule of chats here.

A Caregiver’s Perspective on Patient Engagement

Posted on August 20, 2018 I Written By

The following is a guest blog post by Michael Archuleta, Founder and CEO of ArcSYS, where he shares his experience as a caregiver for his father trying to navigate the healthcare system.

My dad is 99 years old. Having moved him to Utah 6 months ago into a retirement home, our first step was to get an appointment with a new primary care physician. I brought along a list of his medications and watched the nurse tediously look up and enter each into the EHR. Dad and the doctor got along great on that first visit. She assured us that she could help manage his medications. There was nothing realistically that could be done to really improve quality of life. When you’re 99, you’re stuck.

Around the middle of March Dad noticed blood and clots in his urine. Off to the primary care provider we went. They took a sample of urine, tested it, and there was no sign of an infection. Maybe we should look up a specialist in urology. A referral was given and a few days later the urology practice contacted us to make an appointment. Dad declined.

He didn’t want to see another doctor. Period. But day by day, the blood was always present in the urine. He started to worry and finally relented to going to the urologist. Off to the new doctor. Oh, yes, I brought along the list of medications and watched another nurse go to the process of keying them in.

The next day, I got an email via Updox saying there was a message from Dad’s doctor. Updox?? Really?? That was pretty cool. After being on the front end where our EMR system (Red Planet) uploads everything, this was interesting to see how another EMR system was employing Updox. Sure enough, there was the urologist’s note that had been completed 3 hours after the appointment. But, as I read it, I couldn’t help feel a little disappointed. A boilerplate. Since I had been in the room, I knew what was asked. Some questions were never asked and obviously inferred. Maybe a minor point, but I knew it. Anyway, the recommendation was to get an ultrasound. Off to another provider!

Within one day another message alert came from Updox. On logging into the Updox account, there was the report from radiology. Good news, nothing out of the ordinary.

A week passed and it was back to the urologist for a cystoscopy. I was in the room with Dad while the doctor performed the procedure. “Want to see this tumor?” the doctor asked me. “Sure.” I replied. Through the scope I could see a dark mass on the wall of the bladder. The recommendation was to perform surgery to remove the mass and biopsy it.

Another alert came through within a day via Updox. Still the same boilerplate style with default answers. Oh well, if nothing else it was timely.

On May 21 the procedure was done at an outpatient surgical facility. This time I was lucky: No one had to enter the list of medications. From here, unfortunately, things started to go downhill. Dad was left with a catheter and a bag which became his (our) buddy for 10 days. The unfortunate thing was being confined to his room. He could (would) not walk to the dining room at the retirement facility for his meals. So the meals were brought to him each day in a white clam shell styrofoam container. One piece of good news was delivered via Updox, the biopsy was benign.

Once the catheter was removed, he could be mobile, but was too weak to walk. He languished in his room. I coaxed him to try walking. No result. Others in my family encouraged him with the same non-result. I finally took him back to the primary care doctor. One look at him, and she noticed that the spark of life had been extinguished. She took me aside and asked if she needed to play hard ball with him. “You bet” was my response. In a firm way she told Dad that if he didn’t start walking he was going to be dead in 3 months.

That was the trick. Dad was furious that a doctor would be so “unprofessional” as to say anything like that. As soon as we arrived at the retirement home he pushed his walker half way down the hallway just to prove he could walk just fine, thank you. (Mission accomplished.)

But when you’re 99, the body just doesn’t really get better. There was still blood and clots, but were told that would be expected. A couple of weeks later he calls me to say he was in excruciating pain and can’t pee. By the time I arrive the pain was so bad I need to get a hold of the paramedics. They show up in 5 minutes and whisk him to the ER.

Fortunately, the ER has his list of medications so I’m spared having to go through that process. The doctor on call briefly examined him and turned control over to the nurse. A few hours later we have our “friends” the catheter and bag and head home. At least he was committed to walking to the dining room.

A couple of weeks pass and I received a phone call from the paramedics who inform me that Dad had a fall on his way to breakfast. They are transporting him to the ER. He was diagnosed at the ER with a bladder infection and they are concerned about his cardiac functions. Lab results also indicate e. coli and sepsis. Since they don’t have an on-site cardiologist, he was transferred to another hospital and admitted. And, yes, we have to go through the whole list of medications there because they don’t have access to that information? Go figure.

He hated the hospital. There was no rest. Every hour someone was taking vitals, getting him up, doing this, doing that. He was desperate for sleep and rest. At discharge, the cardiologist gave me explicit verbal instructions to take him off his Furosemide. She also gave orders for home nursing and physical therapy.

Whew. He was back home but again too weak to walk to the dining room. The Updox report came through and the written instructions by the cardiologist tell him to continue all meds including Furosemide. Really? Did she forget what she told me. Did she not take her own notes? The nurse showed up at his apartment, took lots of notes, asked lots of questions and examined him. Hmm. Concerned about the swelling in his feet and ankles. It was bad. We confer and decided the Furosemide needed to be restarted. The nurse reached out to the PCP who concurred.

Over the next 3 weeks the swelling slowly receded. The nurse and physical therapist helped him but the improvement was ever so slow.

What I have experienced was a medical world of silos. Each health care provider focused on just what they do. The urologist was pleased with surgery and how well it turned out. But he didn’t have to deal with 3 months of bags, styrofoam meals, ER visits, depression and hospitalizations. None of the doctors conferred with each other about the best treatment. The number of times I filled out past medical histories was finger-numbing. The written documentation didn’t accurately match what took place or what was verbally instructed. The cardiologist was adamant about the meds which would be best for his heart. Within each silo the people were very kind, compassionate, caring and professional. But, the EHR systems just seemed to get in the way of real care. Yes, INDIVIDUALLY, everything was working, but PEOPLE and their SYSTEMS were not interacting to solve the problem.

On the up-side, not one out-of-pocket penny was spent by way of the Medicare Advantage plan. Insurance and billing performed flawlessly. A little over $65,000 was billed and $12,000 was paid.

Clearly, providing health care is not easy. Maybe things should have been done differently. This was a relatively simple issue, but there was no clear direction. Will any healthcare administrator ever be aware of this situation? Probably not. Will any insurance company ever study this case? Doubtful. In hindsight, it would have been just as easy for me to pass out copies of medications and histories and have people tape them to the wall. A few phone calls between providers would certainly have come up with a better solution. But here we are down the road and Dad is not a happy camper.

Is anybody listening?

Barriers to Patient-Centered Research Aired at Harvard Symposium

Posted on July 2, 2018 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.

While writing about health IT, I routinely find myself at legal conferences. Regulatory issues about patient privacy and safety arise everywhere health IT tries to have an impact, so people promoting change must keep in touch with policy-makers and lawyers in the health care area.

Thus I went this past Friday to Harvard for a one-day symposium, “Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight,” sponsored by Harvard’s Petrie-Flom Center.

Audience at Patient-Centered conference at Harvard

*Audience at Patient-Centered conference at Harvard

Involving patients in patient care is a surprisingly recent concern. There was a time when doctors made all the decisions, delivering them as if they had come directly from the entrails of an oracular temple. Visitors were severely limited at hospitals, because family members just got in the way of the professional staff. And although the attitude toward engaging patients and their families has softened somewhat in health care, rigid boundaries still exist in research.

As project leader Joel Weissman pointed out at the beginning of the Petrie-Flom conference, patient rights weren’t considered by health care professionals until the 1980s, as outgrowths of the civil rights and women’s rights movements. Patient engagement languished still longer. It received a legal toehold in the 2010 Affordable Care Act, which set up the Patient-Centered Outcomes Research Institute. Although more researchers over the past eight years have warmed to the idea of engaging with patients in other ways than subjects of clinical trials, the Petrie-Flom conference highlighted how little progress we have made.

In a “nothing about us without us” era, it would seem odd to an outsider like me that patients should be excluded from the roles now being tentatively offered:

  • Joining the research team in some capacity
  • Recruiting subjects for trials and engaging the patient community
  • Helping disseminate results
  • Acting as consultants in some other way

But risks are certainly entailed by inserting non-professionals of any stripe into the research environment, so some criteria and processes need to be set up. Before filling non-traditional roles, patients should be required to undergo training in ethics, the science behind the study, and some of the methodology. There are particular risks when the patients have access to personally identifiable data. (I don’t see why this should ever be necessary, but the possibility was raised several times during the day.)

The panelists also cited conflicts of interest as a risk. Many researchers recruit engaged patients from the companies that make related drugs or other products, simply because those are easy places to recruit. This problem highlights the importance of casting a wide net and recruiting diverse populations as engaged patients. However, one could argue that merely suffering from the condition that the researchers are investigating leaves one with a conflict of interest: you want the research to produce a cure, so you may not be even-handed in your acceptance of negative results.

What spurred this conference? The Petrie-Flom Center and PCORI have spent the past academic year doing a study of patient-centered research, and recently published an article by a team led by Weissman. The center presented the results at Friday’s conference to an audience of some 80 members of the health care field and interested observers.

The study was narrow and intensive. It focused on the attitudes of those running Institutional Review Boards, which are notoriously conservative. Thus, in my opinion, the results focused on what was holding back patient-centered research rather than what was already working well. The process was quite drawn out: questionnaires sent to hundreds of medical schools, public health schools, and hospitals; six focus groups with an iterative process for evaluating recommendations; and a modified Delphi consensus process among 17 experts, including (of course) representative patients.

Respondents to the survey expressed strong support for patient-centered research, believing (at a rate of about 90%) that it would benefit patients and clinicians, as well as (at a rate of about 80%) researchers. Those IRBs who tried out patient-centered research were especially enthusiastic, likely to say that it improved the quality of research results.

But IRB heads also openly expressed confusion and frustration about the pressure to include patients in the “non-traditional” roles listed earlier. Some of their reactions were productive: for instance, large majorities of respondents called on the federal government to provide standards, guidelines, and training for patient engagement. But some of the immediate measures IRBs put in place were irrelevant and even counterproductive. For instance, some required patients to sign informed consent forms, even though these patients were not the subjects of trials and therefore had no reason to need to consent. As patient advocate Jane Perlmutter pointed out, patients in non-traditional roles don’t require protection but require training to ensure that they protect the subjects of the research.

Perlmutter emphasized the importance of financial compensation. Without it, researchers will recruit mostly unemployed patients with independent incomes. To reach out to multiple ethnic groups, age ranges, and economic strata, payment must be offered for the work performed.

Unfortunately, I didn’t see much at Friday’s conference about topics directly related to health IT, such as privacy and ownership of data. Researcher Luke Gelinas mentioned that patient-centered research is more likely to use sensors, networking, social media, and other modern technology than more traditional research, and that these raise issues of informed consent, privacy, and ownership of data.

On the whole, the Petrie-Flom researchers thought there was no need for a whole new approach. But they are working on several recommendations to improve the current situation. In summary, the takeaways I derived from the symposium include:

  • The value of patient-centered research is widely appreciated, and its benefits have been demonstrated where it has been tried.
  • However, progress implementing patient-centered research is slow.
  • Training for patients in non-traditional roles is required, but not so much as to be daunting and make it difficult to participate.
  • Researchers have not devoted enough effort to diversity.
  • Governments can offer support in typical ways, such as setting standards and funding programs.

I also predict that the growth of patient-centered research will place additional strains on IT systems. Bringing in new team members in scattered environments will require multiple systems to interact without friction. Data will need to be segmented and released carefully to just the right people. Interfaces will have to be intuitive (if such a thing exists) and easy to use without much training and without risk of errors. So the field has its work cut out.

Engagement Cartoon – Fun Friday

Posted on August 4, 2017 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.

This week’s Fun Friday healthcare cartoon was shared by the Society for Participatory Medicine. If you don’t know about this organization, take a minute and go check out what they do and see how you can support them. You’ll see why they shared this cartoon.

Sadly, this is the experience of many patients with their doctors. The Society for Participatory Medicine has been working hard to change that mindset. We all need to support these efforts in our own circle of influence. It’s not about what our actions look like, but that we’re really engaged in a relationship with our patients. Doing so will have a powerful effect on everyone in healthcare.

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.