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The Tower of EMR Babel

Posted on May 28, 2015 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.

It’s the sad state of interoperability. This week when I was teaching an EHR workshop I asked for those attending to define what an Electronic Health Record was in their own words. I’d say 90% of them said something about making the healthcare data available to be shared or some variation on that idea. This wasn’t surprising for me since I’ve heard hundreds and possibly thousands of doctors say the same thing. EHR is suppose to make it so we can share data.

While people pay lip service to this idea and just assume that somehow EHR would make data sharing possible, that’s far from the reality today. This is true even in some organizations where they own both the hospital and the ambulatory provider. How sad is this? Extremely sad in my book.

I’ve often wondered what would change the tide. I’ve been long hopeful that ACOs and value based care would help to push the data sharing forward, but that’s going to be a long process. The private HIEs are working the best of any HIEs I’ve seen, so maybe the trend of hospitals acquiring small practices and hospital systems acquiring hospital systems will get us to EHR data sharing nirvana. Although, I don’t think it’s going to make it there in most communities. Instead it’s just going to have a number of large organizations not wanting to share data as opposed to some large and some small ones.

Do people really have much hope for true EHR data sharing? Does FHIR give you this hope? I’m personally not all that optimistic. We all know it’s the right thing to do, but there are some powerful forces fighting against us.

Bringing the Obvious to the Surface Through Analytics

Posted on May 26, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.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.

Analytics can play many roles, big and small, in streamlining health care. Data crunching may uncover headline-making revelations such as the role smoking plays in cancer. Or it may save a small clinic a few thousand dollars. In either case, it’s the hidden weapon of modern science.

The experience of Dr. Jordan Shlain (@drshlain) is a success story in health care analytics, one that he taking big time with a company called HealthLoop. The new venture dazzles customers with fancy tools for tracking and measuring their customer interactions–but it all started with an orthopedic clinic and a simple question Shlain asked the staff: how many phone calls do you get each week?

Asking the right question is usually the start to a positive experience with analytics. In the clinic’s case, it wasn’t hard to find the right question because Shlain could hear the phones ringing off the hook all day. The staff told him they get some 200 calls each week and it was weighing them down.

OK, the next step was to write down who called and the purpose of every call. The staff kept journals for two weeks. Shlain and his colleagues then reviewed the data and found out what was generating the bulk of the calls.

Sometimes, analytics turns up an answer so simple, you feel you should have known it all along. That’s what happened in this case.

The clinic found that most calls came from post-operative patients who were encountering routine symptoms during recovery. After certain surgeries, for instance, certain things tend to happen 6 to 9 days afterward. As if they had received instructions to do, patients were calling during that 6-to-9-day period to ask whether they symptoms were OK and what they should do. Another set of conditions might turn up 11 to 14 days after the surgery.

Armed with this information, the clinic proceeded to eliminate most of their phone calls and free up their time for better work. Shlain calls the clinic’s response to patient needs “health loops,” a play on the idea of feedback loops. Around day 5 after a surgery, staff would contact the patient to warn her to look for certain symptoms during the 6-to-9-day period. They did this for every condition that tended to generate phone calls.

HealthLoop builds on this insight and attaches modern digital tools for tracking and communications. Patients are contacted through secure messaging on the device of their choice. They are provided with checklists of procedures to perform at home. There’s even a simple rating system, like the surveys you receive after taking your car in to be fixed or flying on an airline.

Patient engagement–probably the most popular application of health IT right now–is also part of HealthLoop. A dashboard warns the clinician which patients to perform each day, surfacing the results of risk stratification at a glance. There’s also an activity feed for each patient that summarizes what a doctor needs to know.

Analytics doesn’t have to be rocket science. But you have to know what you’re looking for, collect the data that tells you the answer, and embody the resulting insights into workflow changes and supporting technologies. With his first experiment in phone call tracking, Shlain just took the time to look. So look around your own environment and ask what obvious efficiencies analytics could turn up for you.

EMRs Should Include Telemedicine Capabilities

Posted on May 22, 2015 I Written By

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

The volume of telemedicine visits is growing at a staggering pace, and they seem to have nowhere to go but up. In fact, a study released by Deloitte last August predicted that there would be 75 million virtual visits in 2014 and that there was room for 300 million visits a year going forward.

These telemedicine visits are generating a flood of medical data, some in familiar text formats and some in voice and video form. But since the entire encounter takes place outside of any EMR environment, huge volumes of such data are being left on the table.

Given the growing importance of telemedicine, the time has come for telemedicine providers to begin integrating virtual visit results into EMRs.  This might involve adopting specialized EMRs designed to capture video and voice, or EMR vendors might go with the times and develop ways of categorizing and integrating the full spectrum of telemedical contacts.

And as virtual visit data becomes increasingly important, providers and health plans will begin to demand that they get copies of telemedical encounter data.  It may not be clear yet how a provider or payer can effectively leverage video or voice content, which they’ve never had to do before, but if enough care is taking place in virtual environments they’ll have to figure out how to do so.

Ultimately, both enterprise and ambulatory EMRs will include technology allowing providers to search video, voice and text records from virtual consults.  These newest-gen EMRs may include software which can identify critical words spoken during a telemedical visit, such as “pain,” or “chest” which could be correlated with specific conditions.

It may be years before data gathered during virtual visits will stand on equal footing with traditional text-based EMR data and digital laboratory results.  As things stand today, telemedicine consults are used as a cheaper form of urgent care, and like an urgent care visit, the results are not usually considered a critical part of the patient’s long-term history.

But the more time patients spend getting their treatment from digital doctors on a screen, the more important the mass of medical data generated becomes. Now is the time to develop data structures and tools allowing clinicians and facilities to mine virtual visit data.  We’re entering a new era of medicine, one in which patients get better even when they can’t make it to a doctor’s office, so it’s critical that we develop the tools to learn from such encounters.

Allscripts (MDRX) At Important Moment In Its History

Posted on May 21, 2015 I Written By

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

Allscripts has announced plans to move more of its software development and operations to India, while cutting 250 jobs in the U.S., or about 3.5% of its 7,200-member workforce.  While this is significant enough as it is, it’s an even more important leading indicator of how Allscripts may perform going forward. Here’s how I think things will net out.

Making a “rebalancing”:  The company has called the changes a “rebalancing” of staff which will allow it to respond more effectively and efficiently to shifts in its software design and product dev plans.

But the decision didn’t happen in a vacuum, either. Allscripts recently reported taking a $10.1 million loss for the first quarter ending March 31. That’s down from a loss of $20.7 million for Q1 2014, but the company still appears to be struggling. Allscripts’ overall revenue dropped 2% to $334.6 million for the quarter ending March 31, compared with Q1 of 2014.

What’s next? What should providers draw from these numbers, and Allscripts’ plan to shift more development work offshore? Let’s consider some highlights from the vendor’s recent past:

* Despite some recent sales gains, the vendor occupies a difficult place in the EMR vendor market — neither powerful enough to take on enterprise leaders like Epic and Cerner directly, nor agile enough to compete in the flexibility-focused ambulatory space against relentless competitors like athenahealth.

* According to an analysis of Meaningful Use data by Modern Healthcare, Allscripts is second only to Epic when it comes to vendors of complete EMRs whose customers have qualified for incentives. This suggests that Allscripts is capable of being an effective provider business partner.

* On the other hand, some providers still distrust Allscripts since the company discontinued sales of and support for its MyWay EMR in 2012. What’s more, a current class action lawsuit is underway against Allscripts, alleging that MyWay was defective and that using it harmed providers’ business.

* Partnering with HP and Computer Sciences Corp., Allscripts is competing to be chosen as the new EMR for the U.S. Department of Defense’s Military Health System, and is still in the running for the $11 billion contract. But so are Epic and Cerner.

The bottom line: Taken together, these data points suggest that Allscripts is at a critical point in its history.

For one thing, cutting domestic staff and shifting dev operations to India is probably a make or break decision; if the change doesn’t work out, Allscripts probably won’t have time to pull back and successfully reorient its development team to current trends.

Allscripts is also at a key point when it comes to growing place in the brutal ambulatory EMR market. With players like athenahealth nipping at its heels from behind, and Epic and Cerner more or less controlling the enterprise market, Allscripts has to be very sure who it wants to be — and I’m not sure it is.

Then when I consider that Allscripts is still in the red after a year of effort, despite being at a peak level for sales, that tears it.  I’m forced to conclude that the awkwardly-positioned vendor will have to make more changes over the next year or two if it hopes to be agile enough to stay afloat. I believe Allscripts can do it, but it will take a lot of political will to make it happen. We’ll just have to see if it has that will.

Meaningful Use Stage 3 Success Could Rely On Vendors

Posted on May 20, 2015 I Written By

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

Today I was reading a report on the Health IT Policy Committee’s review of pending Meaningful Use Stage 3 rules — which would ordinarily be as about as exciting as watching rocks erode — when something leapt out at me which I wanted to share with you, dear readers.

The overview, brought to us courtesy of Medical Practice Insider, noted that proposed plans for the Stage 3 rule would allow providers to attest in 2017, though attesting wouldn’t be mandatory until 2018. What this means, editor Frank Irving notes, is that it would be up to EMR vendors to be ready for providers wishing to attest a year early.

The folks overseeing this discussion, the Advanced Health Models and Meaningful Use Workgroup, seem (wisely) to have had their doubts that vendors could be relied upon to meet the 2017 deadline. At the session, workgroup members proposed a couple of alternative ways of addressing this timeline. One was to make the 2017 deadline go away, requiring instead that EMRs have full 2015 certification by 2018. Another was to allow optional attestation in 2017, but if need be, with 2014 EMR certification.

I don’t know about you, but this whole thing makes me nervous. By “whole thing,” I mean adjusting the rules to deal with the likely resistance vendors will exhibit to keeping their roadmap in synch with federal requirements.

After all, consider the history of EMR vendors’ relationship with providers. As we’ve noted, HHS has paid out about $30B in Meaningful Use incentives under HITECH without insisting that vendors provide interoperability. And what have EMR vendors done?  They’ve avoided developing shared standards for interoperability with an alacrity which amazes the eye.

In fact, some EMR vendors — including top contender Epic Systems — have been slapping providers with fees for data sharing (even if they’ve kind of dropped them for now), at prices which could leave them millions in the hole. If that isn’t dead opposite to what those in public policy hope to see happen, I don’t know what is.

Bottom line, if the good people overseeing Meaningful Use want to see Stage 3 accomplish good things, they’ll need to see to it that the new rules give regulators some leverage when it comes to controlling vendors.

As the whole sad interoperability saga has demonstrated, vendors will not take actions that advance health IT on their own. Unlike in other IT markets, where interoperability and meeting regulatory deadlines have been the signs of a winner, EMR vendors actually have strong incentives to ignore providers’ business imperatives.

With any luck, however, between tougher rules on Stage 3 and public pressure to achieve interoperability, EMR vendors will do the right thing.  They’ve certainly had long enough.

A “Collaborative Consult” Could Greatly Improve EMR Value

Posted on May 19, 2015 I Written By

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

Over the past several years, EMRs have taken some steps forward. At least in some cases, analytics have improved, vendors have begun offering cloud or on-premise install versions of their products and user interfaces have even improved.

But one problem with EMRs that seems to be nearly unfixable is the need for providers to stare at an EMR screen, leaving patients to fidget uncomfortably while they wait for a bit of face-to-face contact and discussion. Sure, you’ll see scribes in hospital emergency departments, allowing ED docs to speak to patients without interruption, but in the outpatient settings where patients spend most of their time, the EMR screen is king.

Such a focus on the EMR display isn’t unreasonable, given the importance of the data being entered, but as critics have noted countless times, it does make it more likely that the provider will miss subtle clues as to the patient’s condition, and possibly end up offering lower-quality care than they would have if they had an old-fashioned computerless encounter.

I have long thought, however, that there’s a solution to this problem which would be helpful to both the physician and the patient, one which would literally make sure that patients and doctors are on the same page. I’m speaking of a new group of settings for EMRs designed specifically to let patients collaborate with physicians.

Such an EMR setting, as I envision it, would begin with a section depicting a dummy patient of the appropriate gender.The patient would touch the areas of the body which were causing them problems, while the doctor typed up a narrative version of the problem presentation. The two (patient and doctor) would then zoom in together to more specific descriptions of what the patient’s trouble might be, and the doctor would educate the patient as to what kind of treatment these different conditions might require.

At that point, depending on what condition(s) the doctor chose as requiring further study, lists of potential tests would come up. If a patient wanted to learn what these tests were intended to accomplish, they’d have the liberty to drill down and learn, say, what a CBC measures and why.  The patient would also see, where possible, the data (such as high cholesterol levels) which caused the doctor to seek further insight.

If the patient had a known illness being managed by the physician, such as heart disease, a tour through a 3-D visual model of the heart would also be part of the collaboration, allowing the doctor to educate the patient effectively as to what they were jointly trying to accomplish (such as halting heart muscle thickening).

The final step in this patient-doctor process would come with the system presenting a list of current medications taken by the patient, and if appropriate, new medications that might address any new or recurring symptoms the patient was experiencing.

The final result would come in the form of a PDF, e-mailed to the patient or printed out for their use, offering an overview of their shared journey. The doctor might have to spend a few minutes adding details to their notes after the patient left, but for the most part, the collaborative consult would have met everyone’s needs.

Now you tell me:  Why aren’t we doing this now?  Wouldn’t it make much more sense, and take much more advantage of the powerful desktops, tablets and smartphones we have, than having a provider stare at a screen for most of their visit with a patient?

Gathering a Health Care Industry Around an Open Source Solution: the Success of tranSMART

Posted on May 18, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.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.

The critical software driving web sites, cloud computing, and other parts of our infrastructure are open source: free to download, change, and share. The role of open source software in healthcare is relatively hidden and uncelebrated, but organizations such as the tranSMART Foundation prove that it is making headway behind the scenes. tranSMART won three awards at the recent Bio‐IT World conference, including Best in Show.

The tranSMART Foundation is a non‐profit organization that develops creates software for translational research, performing tasks such as searching for patterns in genomes and how they are linked to clinical outcomes. Like most of the sustainable, highly successful open source projects, tranSMART avoids hiring programmers to do the work itself, but fosters a sense of community by coordinating more than 100 developers from the companies who benefit from the software.

I talked recently to Keith Elliston, CEO of the tranSMART Foundation. He explained that the tranSMART platform was first developed by Johnson & Johnson. When they realized they had a big project that other pharmaceutical companies could both benefit from and contribute to, they reached out to Pfizer, Millennium (now the Takeda Oncology Company), and Sanofi to collaborate on the development of the platform.

In 2012, Johnson & Johnson decided to release the platform as open source under the GPLv3 open source license. In early 2013, a group of scientists from the University of Michigan, Imperial College and the Pistoia Alliance gathered together to form the tranSMART Foundation, in order to steward the growing community development efforts on the platform. The growing foundation has garnered support from other major companies, including Oracle (whose database contained the data they were operating on), Deloitte, and PerkinElmer.

Two major challenges faced by open source projects are funding and community management. Elliston demonstrated to me that tranSMART is quite successful at both. The foundation currently receives 95% of their funding from members. In fact, as they develop, they would like to tap into grants and philanthropies, reducing the member funding to about 20%. In pursuit of that goal, the foundation recently gained 501(c)(3) non‐profit status in the US. They currently are sitting comfortably, with 12 months of secured funding, and are in the process of raising monies for both the foundation’s Fellows program and their version 1.3 development program.

Like the Linux Foundation, a model for much of what tranSMART does, it offers two levels of membership. Gold membership costs $100,000 per year and earns the company a seat on the board of directors. Silver membership costs $5,000 to $20,000 per year based on several factors (size of the company, whether it is for‐profit or non‐profit, etc.) and allows one to participate in electing Silver member board directors.

Development is spread among a large number of programmers across the community. The most recent version of the software (1.2) was created mostly by developers paid by member companies. The foundation has set up working groups on which developers and community members volunteer to solve key tasks such as project management and defining the architecture. Developer coordination is spread across three main committees representing code, community, and content. These committees are composed of member representatives, and coordinate the working groups that carry out much of the foundation’s mission.

Consequently, tranSMART evolves briskly and is seen by its users as meeting their needs. A major achievement of the 1.2 release was to add support for the open source relational database PostgreSQL (in addition to the original database, Oracle). Because the many of the large, semi‐structured sets of data tranSMART deals with may be more suited to some sort of NoSQL database, they are exploring a move to one of those options as a part of their research program. The architecture group is beginning to define version 2.0, and coding may start toward the end of this year.

Although headquartered in the US, tranSMART is finding 60% to 70% of its activity taking place in Europe, and is forming a sister organization there. Elliston claims that the current funding environment for genetic and pharma research is far more favorable in Europe, even though they are taking longer than the US to recover from the recent recession. As an example, he compared the 215 million dollars offered by the White House for its Precision Medicine Initiative (considered a major research advance here in the US) with the 3 billion Euros recently announced by Europe’s Innovative Medicines Initiative (IMI).

I asked Elliston how the tranSMART Foundation achieved such success in a field known to be difficult to open source projects. He said that they approached the non‐profit space with an entrepreneurial strategy learned in for‐profit environments, and focused on staying lean. For instance, they built out marketing and communications departments like a venture‐backed start‐up, using contractors drawn from their startup experience. Furthermore, they have assembled a team of highly experienced part‐time employees who spend most of their time in other organizations. Elliston himself devotes only 10 hours a week to his job as tranSMART CEO.

We could pause here to imagine what could be achieved if other parts of the health care industry adopted this open source model. For instance, the US contains 5,686 hospitals, of which half have installed what the government calls a “basic EHR system” (see page 12 of an ONC report to Congress). What if the 2,700‐odd hospitals saved the hundreds of millions each had spent on a proprietary API, and combined the money to spend a few billions developing a core open source EHR that each could adapt to its needs? What sort of EHR could you get for a couple billion dollars of developer time?

Naturally, technical and organizational obstacles would stand in the way of such an effort. Choosing an effective governing board, designing an open architecture that would meet the needs of 2,700 very diverse organizations, and keeping the scope reasonable are all challenges that go beyond the scope of this article. On the other hand, many existing projects could serve as a basis. VistA is used not only throughout VA hospitals but in many US hospitals and foreign national health care systems. OpenMRS is also widely ensconced in several African countries and elsewhere.

I believe tranSMART’s success is hard to reproduce in the clinical environment for other reasons. tranSMART deals with pharmaceutical companies first and foremost, and biomedical academic researchers as well. Although neither environment focuses on computer technology, they work in highly technical fields and know how heavily they depend on computing. They are comfortable with trends in modern computing, and are therefore probably more comfortable conforming to the open source development model that is so widespread in computing.

In contrast, hospitals and clinics are run by people whose orientation is to other people. You can walk through one of these settings and find plenty of advanced technology, all driven by embedded computers, but the computing tends to be hidden. Anything that brings the clinician into close contact with the computer (notably the EHR) is usually cumbersome and disliked by its users.

The main users and managers in these environments are therefore not comfortable discussing computing topics and don’t have any understanding of the open source model. Furthermore, because the EHRs are mostly insular and based on legacy technologies, the IT staff and programmers employed by the hospitals or clinics tend to be outside the mainstream of computing. Still, open source software is making inroads as support tools and glue for other systems. Open source EHRs also have seen some adoption, as I mentioned. The tranSMART Foundation persists as a model that others can aspire to.

Blind Woman Enjoys 3D Printed Ultrasound of Her Baby

Posted on May 14, 2015 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.

Since I’ve been focusing on patient stories this week, I thought that I’d share this viral video that I’m sure many of you have seen. If you haven’t seen it, this is the video of a lady who is blind as she gets to touch and feel a 3D printed ultrasound of the shape of her baby. It’s a pretty amazing video and the ladies reaction to it is quite extraordinary.

I love this video because he provided me a new understanding of the challenges people with disabilities can have in their patient experience. However, as a tech junkie, I also totally love how all these technologies could come together in such a tremendously beautiful way. This is why I’m so optimistic about the next 10 years of healthcare. We’re just getting started when it comes to technology improving healthcare.

A Patient’s Perspective on Accessibility – Carly Medosch

Posted on May 13, 2015 I Written By

The following is a guest blog post by Carly Medosch. You can find more about Carly on her blog and on Twitter @carlyrm.
CarlyRM
It seems like every day there is a new use of technology available to assist patients. The just-launched Apple Watch already includes several health and fitness features, and the company shows promise for more scientific breakthroughs with the ResearchKit for iOS. There are smartphone apps and websites for patients to research medication costs, identify pills, and find help from patients with the same diagnosis. Some patients can visit their doctor virtually using telehealth platforms.

This week I have been reading Regina Holliday’s memoir “The Writing on the Wallwhich details her husband, Fred’s, struggle to get appropriate care for his stage IV kidney cancer. In the book, Regina mentions going home from caring and advocating for her husband in the hospital, caring for her two young boys, and then spending hours on the Internet doing health research. Regina Googles words the oncologist says during his quick stop by the room. She uses Facebook and other websites to coordinate support care for her children. She researches medical and legal issues large and small.

You may think that it is great that just a wondrous resource exists, but I am saddened by the fact that this hard working woman, a wife, mother, caregiver, art teacher, and toy store manager, was forced to pull a night shift as a medical researcher. This was precious time that took her away from her dying husband, her young children, and her own important need for proper rest.

I am upset about these things because they have affected me, too. At age 13 I was diagnosed with Crohn’s disease. This year my chronic illness turns 21 years old. I’ve lived far longer as a sick person than a well one. I spend my spare time doing advocacy work supporting patients.

It is endlessly frustrating for me to hear very smart people, with excellent academic pedigrees, and gobs of VC funding, tell me about their exercise app for dogs. Or their plan to let patients research endless information about their doctor’s conflicts of interest. Or a map for patients to find outdoor activities to increase public health.

These are products created by people who do not understand illness. Originally I thought they just didn’t understand chronic illness, the endless parade of doctors, medical appointments, medications, and bills. The piles of paperwork and the endless to do lists, to which we now add the incessant intrusion of electronic alerts.

But these products are not created for the acutely ill, either, not really. Even if you are a perfectly healthy adult a vehicle may strike you as you cross the street. In that example, are you going to research the best doctor, the hospital with the best safety score, the emergency room with the shortest wait time? No. If you are able to do anything, you will try to call 911. Most likely someone else will call for you. You are powerless and all the technology in the world won’t help you.

I believe technology could help us. But I think there’s an image problem. I don’t think it’s seen as sexy to market a product for the chronically ill. Companies are trying to sell an image, and that image is easier to sell if it’s world-class athletes, women in high heels, and health. A product is presented as making regular people feel powerful, in control of their lives and their health. You can use your fitness tracker to become healthier. It will reward you for taking the actions of healthy people. A fitness tracker could easily be tweaked to offer a warning for people that need to limit their steps. Some people with chronic fatigue syndrome are advised to get a small amount of activity – a sweet spot that’s “some” but not “too much.” A fitness tracker could be programmed to encourage more activity up to a point, and then warn the user to slow down as the step count grew too high. But the marketing campaign for that type of product would discourage sales growth.

We are given products and features that are billed as empowering, but seem to translate to just being more work. More items on our endless to do list, more things to squeeze into our maxed-out budgets, less time with the people and activities we love. The products are more sleek and beautiful (which is quite an improvement), but they are rarely designed for people with vision issues, or arthritic hands, or jittery movements. The more we need technology, the harder it is to grasp.

Recently I was struck with a terrible migraine. At home I would go to the clinic across the street, receive an injection, and go home to sleep it off. I would lose the day, but I would only pay about $30 with my insurance. The treatment was in my chart, so although I may not see the same clinician each time, they could easily look up what to administer.

This time I was in Chicago, a city I’d never visited. I took out my smart phone and used Google Maps to see the locations of walk in clinics. Google Maps has a rating feature for businesses and I could see this one has several stars. My vision was blurry, and my body was weak and racked with nausea, but I was able to call one. With some difficulty I asked the wait time and if they did injections for migraines. The voice on the other line asked me if I had the medicine. Of course I didn’t have the medicine! If I had it, why would I go to a clinic? Then they asked what the medicine was called, and that is when my brain decided it had functioned enough. I stammered. I paused. I couldn’t think of the word and I couldn’t think of the other words to explain the confusion was caused from my medical distress. Powerless, I hung up.

I walked to a first aid station in the building and was advised to go to the emergency room. I was assured that the hospital was close and good. The man in the first aid station gave me an ice pack, which I pressed firmly to my head as I staggered out to find a cab.

The world spun and my stomach churned, but eventually I got to the hospital. I arrived to a packed waiting room full of people who looked like they had been there a long time. The care was poor, but it seemed due to overcrowding and underfunding. The staff was kind. I was in the loud, bright waiting room for hours. I’ve received a bill for over $100 from the hospital, and I suspect I will receive another from the physician who eventually saw me.

There was no app to tell me the wait times, but I’m not sure I could have endured the cab ride to a hospital farther away. I could barely use my smart phone to make a call, so there was no way I was going to be able to research facilities, or prices. It was difficult for me to seek help from family and friends, as both light and noise made the pain worse, and anyway I was so far from home.

When people develop technology for patients, they often don’t even consult with a single patient. It is my dream that this not only be completely reversed, but that a variety of symptoms and conditions be considered when developing and testing the product. Can the product be used by a 40 year old healthy man, can it be used by a child with smaller hands, can it be used by a person with poor eyesight, can it be used by someone in severe pain, can it be used quickly in an emergency? Are your product solving actual problems and enhancing life for your customers, no matter their health status?

Comprehensive vs. Complete: Creating a Truly Representative Health Record

Posted on May 12, 2015 I Written By

The following is a guest blog post by Stacey (@coffeemommy), an empowered patient and breast cancer survivor.

According to my EHR, I had breast cancer. And I had two mastectomies and I’m currently on Tamoxifen. If you read a little deeper, you’ll discover I also had a colonoscopy at age 39. It was clean.

According to my EHR from another institution, I had a colonoscopy at age 37 and two polyps were removed. I also had a series of ideopathic headaches. Beyond my verbally sharing this information with my current care team, they would have no record of these activities.

According to my EHR from yet another institution, I had a miscarriage in 2000 and went on to have two full-term healthy deliveries after that. More headaches and migraine medication. Again, these items are not reflected in detail in my current healthcare record.

And there are more health records of mine spread across the country.

Everything in those respective EHRs is accurate but my “electronic health record” is not really a record at all. My EHRs are snippets of time spanning several states of residency and ultimately dating back to a thick paper folder that, as a child, I remember checking out from the ground floor before appointments at the now defunct Wilford Hall Medical Center.

Beyond my memory of surgeries, inoculations and well visits past, I question whether documentation of my early health history really exists at all at this point.

And therefore, the burden of tying the highlights of my health history together for every new health care provider, falls on my shoulders. A doable task but certainly not an easy task in the typical 15 minute visit window.

Electronic health/medical records lack true interoperability and therefore are not comprehensive for most of the population. Teams of no doubt brilliant people are allegedly working on solutions and voices demanding interoperability and advances in the health IT space are loud.

However, even if my EHR were comprehensive tomorrow in the above context, it would still be incomplete. While every physician who treats me has read/write access to the record I, as the very subject of the record, am unable to add my two cents.

And my two cents would add a lot of context.

As an example, for the past 22 months, I have been on Tamoxifen to keep my estrogen-loving breast cancer from recurring. For 21 of those 22 months, I have had random soft-tissue swelling, random bilateral rashes and a face tingling turned numbness that progressed to such a point I was running to a mirror to see if my left side was drooping. Since there is no documentation of these symptoms as a side effect of Tamoxifen, I’ve been told to take Loratadine for swelling and have had two brain MRIs to rule out a tumor.

What my current team struggles to understand is that historically, I am reactive to many things. Soaps, shampoos, penicillin, sulfa drugs, ciprofloxacin, lanolin and a variety of other substances trigger rashes and soft tissue swelling in my body. So, starting on a new drug and having ‘undocumented’ side effects was not an unusual series of events for me.

When I asked to take a half dose and was told, “We don’t have a protocol for that.”

Again, what is missing from my EHR is the history of my taking half doses of many of the drugs I have been prescribed and having therapeutic results. As a child this was never a problem. For the first 22 years of my life, I was considered a US military dependent and the continuity of care, regardless of what base we were stationed at, was solid. The next twenty years has been a scatter shot of services across zip codes, providers and payors.

A comprehensive (including all of my past) and complete (including my two cents) would save time, money and headaches. Instead of emailing pictures and bringing a written diary of skin rash and swelling, I could simply upload directly to my own record. Instead of emailing a physician with my side effects and saying, “Please add this event to my record” I could add it myself for no cost to the healthcare system treating me. Patterns could be clearly seen and treatment could be modified appropriately if the situation was warranted. Side effects could more accurately be documented and communicated to other patients as trends were noticed.

The idea of patient reported outcomes being included in the EHR seems incomprehensible to some. I’ve heard, “But you can’t trust patient data” and “Patient supplied data is unreliable.” Really? To me it seems that patients themselves are the only ones who could supply this level of data to enrich the health record. And they have the biggest interest in comprehensive care. And, by the way, providers trust my input when I document my health history on the long sheet of paper on an initial visit – why is my information suddenly invalid as a patient?

To be clear, I’m not asking that patients have the ability to edit or rewrite what the healthcare practice has so diligently recorded. I am simply asking that our record reflect more than the set of symptoms we present with at any given visit. Tracking trends real-time will prevent the dreaded question, “How long has this been going on?” The answer will be front and center.

So as the great minds gather to create the interoperable EHR, please consider the patient voice. Interoperability may allow for a comprehensive record but, until my side of the story is reflected, the documentation will remain incomplete.

My body, my data and my health. Please allow me to participate.

Stacey is a strategy and communications consultant inspired to empower patients and caregivers through collaborative education and community building. Runner. Cyclist. Coffee drinker. Organic gardener. Wife to one. Mom to two. Empowered patient and breast cancer survivor almost two years NED. Connect with her on Twitter @coffeemommy