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E-Patient Update:  Keeping Data From Patients Has Consequences

Posted on September 20, 2016 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.

Given who I am – an analyst and editor who’s waist-deep in the health IT world – I am primed to stay on top of my health data, including physician notes, lab reports, test results and imaging studies. Not only does it help me talk to my doctors, it gives me a feeling of control which I value.

The thing is, I’m not convinced that most physicians support me in this. Time and again, I run into situations where I can’t see my own health information via a portal until a physician “approves” the data. I’ve written about this phenomenon previously, mostly to wring my hands at the foolishness of it all, but I see the need to revisit the issue.

Having given the matter more thought, I’ve come to believe that withholding such data isn’t just unfortunate, it’s harmful. Not only does it hamper patients’ efforts to manage their own care effectively, it reveals attitudes which are likely to hold back the entire process of transforming the health system.

An Example of Delayed Health Data
Take the following example, from my own care. I was treated in the emergency department for swelling and pain which I feared might be related to a blood clot in my leg. The ED staff did a battery of tests, including an MRI, which concluded that I was actually suffering from lumbar spine issues.

Given that the spinal issue was painful and disabling, I made an appointment for follow up with a spine specialist for one week after the ED visit. But despite having signed up with the hospital’s portal, I was unable to retrieve the radiologist’s report until an hour before the spine specialist visit. And without that report the specialist would not have been able to act immediately to assist me.

I don’t know why I was unable to access the records for several days after my visit, but I can’t think of a reason why it would have made sense to deprive me of information I needed urgently for continued care. My previous experience, however, suggests that I probably had to wait until a physician reviewed the records and released them for my use.

Defeating the Purpose
To my way of looking at things, holding back records defeats the purpose of having portals in the first place. Ideally, patients don’t use portals as passive record repositories; instead, they visit them regularly and review key information generated by their clinical encounters, particularly if they suffer from chronic illnesses.

It’d be a real shame if conservative attitudes about sharing unvetted tests, imaging or procedure data undercut the benefits of portals. While it’s still not entirely clear how we’re going to engage patients further in managing their health – individually or across a population – portals are emerging as one of the more effective tools we’ve got. Bottom line, patients use them, and that’s a pretty big deal.

I’m not saying that patients have never overreacted to what looked like a scary result and called their doctor a million times in a panic. (That seems to be the scenario doctors fear, from conversations I’ve had over time.) But my guess is that it’s far less common than they think.

And in their attempts to head off a minor problem, they’re discouraging patients from getting involved with their care, which is what they need patients to do as value-based care models emerge. Seems like everyone loses.

Sure, patients may struggle to understand care data and notes at first, but what we need to do is educate them on what it means. We can’t afford to keep patients ignorant just to protect turf and salve egos.

Building a Usable Healthcare API

Posted on August 31, 2016 I Written By

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

I’ve long believed that a rock solid API is going to be required by healthcare IT software companies and EHR vendors in particular. If we want hospitals and doctors to be able to accomplish everything they need to accomplish, we need APIs to connect providers to services that will better serve the patients. EHR vendors aren’t going to do everything. With this in mind, we thought that it was time to start a discussion on how to build a usable healthcare API.

On Thursday, September 8th at 3:30 PM ET (12:30 PM PT), join us LIVE in our latest Healthcare Scene interview, as we discuss healthcare APIs with the following experts:

2016 September - Building a Usable Healthcare API-Headshots
There are a lot of people who talk generally about an API, but very few that have executed it well in healthcare. CareCloud and ManaHealth are two healthcare companies that are trying to implement a health care API in the right way, so we’re excited to sit down with them to talk about their experience building healthcare APIs.

If you’ve never watched one of our live video interviews, you can watch it live on this YouTube page (includes Live Chat room as well) or just visit this post on the day of the event and watch the video embedded below:

We look forward to shedding more light on what it takes to build a high quality, usable healthcare API.

Be sure to Subscribe to Healthcare Scene on YouTube to be updated on our future interviews or watch our archive of past Healthcare Scene Interviews.

Duplicate Work in Healthcare

Posted on July 7, 2016 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.

One of my favorite stories is the time we implemented an EHR in the UNLV health center. At first, we decided to do a phased implementation in order to replace some legacy bubble sheet software that was no longer being supported. So, we just implemented enough of the PM system to handle the patient scheduling and to capture the charge data in the EHR. Of course, we were also a bit afraid if we implemented the full EHR, the staff would revolt.

A week or two into the partial implementation, something really amazing happened. First, some of the providers started to document the patient visit in the EHR even though they still had to document it in the paper chart as well. I asked them why and they just said, “It was there and I thought it would be good to have my info in the note.”

Second, some of the providers started asking me why they had to do duplicate work. They really hated having to enter the diagnosis and charge codes into the EHR and then document them again in the paper chart. Plus, they followed up that they could see the other section of the notes in the EHR and “why couldn’t they just use that instead of the paper chart.” The reality was: Doctors hated doing duplicate work!

Once I heard this, I ran to the director of the Health Center’s office and told her what they’d said. We both agreed, why wait? A week or so later we’d moved from paper charts to a full EHR implementation.

There were a lot of lessons learned from this experience. First, it’s amazing how people want to use the new system when they can see that it’s possible. They basically drove the EHR implementation forward. However, what was interesting to me was the power of “duplicate work.” We all hate it and it was a driving force for using technology the right way.

While we used the concept of duplicate work for good, there’s a lot of duplicate work in healthcare which drives patients and healthcare staff totally nuts. However, we don’t do anything about it. This was highlighted perfectly in a recent e-Patient update from Anne Zieger. Go and read her full account. We’ll be here when you get back.

What’s astounding from her account is how even though doctors hate duplicate work for themselves, we’re happy to let our patients and support staff do duplicate work all the time. I’ve seen some form of Anne’s experience over and over. Technology can and should solve this. This is true across multiple clinics but is absolutely true in the same clinic where you handle the workflow.

I get that there are reasons why you may want a staff to verify a patient’s record to ensure it was entered correctly and is complete. That’s absolutely understandable and would not have likely been an issue for Anne. However, to disregard the work a patient had done on their intake paperwork is messed up. Let alone not tapping into a patient’s history that may have been entered at another clinic owned by the same organization or collecting/updating the info electronically through a patient portal. I’m reminded of @cancergeek’s recent comment about the excuse that “it’s how we’ve always done it.”

In the past this might not have mattered too much. Patients would keep coming back. However, the tides of consumerism in healthcare are changing. Do you enjoy doing duplicate work? Of course not! It’s time to purge duplicate work for patients and healthcare staff as well!

Providers: Today’s Telehealth Tech Won’t Work For Future

Posted on July 5, 2016 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.

A new study has concluded that while healthcare leaders see major opportunities for growing their use of telehealth technologies, they don’t think existing technologies will meet the demands of the future.

For the study, which was sponsored by Modern Healthcare and Avizia, researchers surveyed more than 280 healthcare executives to see how they saw the future of telehealth programs and delivery models. For the purposes of the study, they defined telehealth as encompassing a broad mix of healthcare approaches, including consumer-focused wireless applications, remote monitoring of vital signs, patient consultations via videoconferencing, transmission of still images, use of patient portals and continuing medical education.

The survey found that 63% of those surveyed used telehealth in some way. Most respondents were with hospitals (72%), followed by physician groups and clinics (52%) and a grab bag of other provider organizations ambulatory centers in nursing homes (36%).

The most common service lines in use by the surveyed providers included stroke (44%), behavioral health (39%), staff education and training (28%) and primary care (22%). Other practice areas mentioned, such as neurology, pediatrics and cardiology, came in at less than 20%. Meanwhile, when it comes to telehealth applications they wish they had, patient education and training was at the top list at 34%, followed by remote patient home monitoring (30%) and primary care (27%). Other areas on providers’ wish lists include cardiology (25%), behavioral health (24%), urgent care (20%) and wound care (also 20%).

Not only did surveyed providers hope to see telemedicine extended into other service lines, they’d like to see the technologies used for telehealth delivery change as well. Currently, much telehealth is delivered via a computer workstation on wheels or ‘tablet on a stick.’  But providers would like to see technology platforms advance.

For example, 38% would like to see video visits with clinicians supported by their EMR, 25% would like to offer telemedical appointments through a secure messaging app used by providers and 23% would like to deliver telemedical services through personal mobile devices such as tablets and smartphones.

But what’s driving providers’ interest in telehealth? For most (almost 75%) consumer demand is a key reason for pursuing such programs. Large numbers of respondents also cited the ability to improve clinical outcomes (66%) and value-based care (62%).

That being said, to roll out telehealth in force, many respondents (50%) said they’d have to make investments in telehealth technology and infrastructure. And nearly the same number (48%) said they’d have to address reimbursement issues as well. (It’s worth mentioning, however, that at the time the study was being written, the number of states requiring reimbursement parity between telehealth and traditional care had already risen to 29.)

This study underscores some important reasons why providers are embracing telehealth strategies. Another one pointed out by my colleague John Lynn is that telehealth can encourage early interventions which might otherwise be delayed because patients don’t want to bother with an in-person visit to the doctor’s office. Over time, I suspect additional benefits will emerge as well. This is such an exciting use of technology!

E-Patient Update: Apple Offers iPhone EMR Access

Posted on June 22, 2016 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 last few years, Apple has steadily beefed up the health data access provided by its iPhone operating system, in ways that have made some sense. But depending on how consumers react, its latest effort may have the biggest impact of all of its data sharing efforts to date.

In its latest mobile operating system, Apple is allowing users to store their EMR data directly in its Health app, using the HL7 CCD standard. And while this isn’t a huge step forward for interoperability, it does give e-patients like me a greater sense of control, which is definitely a good thing.

In recent years, Apple has made increasingly sophisticated efforts to unify healthcare data. Perhaps the highest profile effort is the summer 2014 launch of HealthKit, a healthcare data integration platform whose features include connecting consumer-generated data with traditional clinical sources such as the Epic EMR.

Meanwhile, it has steadily added capabilities to the Health app, which launched with iOS 8. Since then, it has been encouraging consumers to manage health data on their phone using HealthKit-enabled apps like the Epic MyChart patient portal app. The new EMR data retrieval function is available in the iOS 10 version of Health.

According to Apple blog 9to5Mac, consumers can import the CCD data from Mail, Safari and other applications as well as into Health. When consumers add the CCD file to Health, the app opens and providers a quick preview of the document’s data, including the healthcare provider’s name, patient’s name and document owner’s name. It also identifies the document’s custodian. Once downloaded, the device stores the document in encrypted form, indefinitely.

Also, when a user confirms that they want to save the record to the Health app, the CCD info is added to a list of all of the health record documents stored in the app, making it easier to identify the entire scope of what a user has stored.

Looked at one way, the addition of medical record storage capabilities to the latest iOS release may not seem like a big deal. After all, I’ve been downloading broad swaths of my healthcare data from the Epic MyChart app for a couple of years now, and it hasn’t rocked my world. The document MyChart produces can be useful, but it’s not easily shareable. How will it change patients’  lives to store multiple records on their cell phone, their tablet or heaven help us, their Apple Watch?

On the surface, the answer is almost certainly “not much,” but I think there’s more to this than meets the eye. Yes, this solution doesn’t sound particularly elegant, nor especially useful for patients who want to share data with clinicians. My guess is that at first, most consumers will download a few records and forget that they’re available.

However, Apple brings something unique to the table. It has what may be the best-integrated consumer technology base on the planet, and can still claim a large, fanatical following for its products. If it trains up its user base to demand EMR data, they might trigger a cultural shift in what data patients expect to have available. And that could prove to be a powerful force for change.

New Effort Would Focus HIE Data Around Patients

Posted on June 7, 2016 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.

In theory, doctors should be able to pull up all data available on a patient located within any networks to which they have access. In other words, not only should they be able to see any data on Patient A within the EMR where A’s care is documented, but also retrieve data on A from within any HIEs which connect with the EMR. But the reality is, that’s not always the case (in fact, it’s rarely the case).

To help weave together patient data strung across various HIEs, three exchanges have teamed up to pilot test the idea of a patient-centered data home (PCDH). While many health leaders have looked at the idea of putting patients in charge of their own data, largely by adding to or correcting existing records, getting patients involved in curating such data has been difficult at best.

In this model, Arizona Health-e Connection, western Colorado’s Quality Health Network and the Utah Health Information Network are testing a method of data sharing in which the other HIEs would be notified if the patient undergoes an episode of care within their network.

The alert confirms the availability and specific location of the patient’s clinical data, reports Healthcare Informatics. Providers will then be able to access real-time information on that patient across network lines by initiating a simple query. Unlike in other models of HIE data management, all clinical data in a PCDH will become part of a comprehensive longitudinal patient record, which will be located in the HIE where the patient resides.

The PCDH’s data sharing model works as follows:

  • A group of HIEs set up a PCDH exchange, sharing all the zip codes within the geographic boundaries that their exchanges serve.
  • Once the zip codes are shared, the HIEs set up an automated notification process which detects when there is information on the patient’s home HIE that is available for sharing.
  • If a patient is seen outside of their home territory, say in a hospital emergency department, the event triggers an automated alert which is sent to the hospital’s HIE.
  • The hospital’s HIE queries the patient’s home HIE, which responds that there is information available on that patient.
  • At that point providers from both HIEs and query and pull information back and forth. The patient’s home HIE pulls information on the patient’s out-of-area encounter into their longitudinal record.

The notion of a PCDH is being developed by the Strategic Health Information Exchange Collaborative, a 37-member HIE trade group to which the Utah, Arizona and Colorado exchanges belong.

Developing a PCDH model is part of a 10-year roadmap for interoperability and a “learning health system” which will offer centralized consent management and health records for patients, as well as providing national enterprises with data access. The trade group expects to see several more of its members test out PCDHs, including participants in Arkansas, Oklahoma, Indiana, Kentucky and Tennessee.

According to the Collaborative, other attempts at building patient records across networks have failed because they are built around individual organizations, geographies such as state boundaries, single EHR vendors or single payers. The PCDH model, for its part, can bring information on individual patients together seamlessly without disrupting local data governance or business models, demanding new technical infrastructure or violating the rights of local stakeholders, the group says.

Like other relatively lightweight data sharing models (such as the Direct Project) the PCDH offers an initial take on what is likely to be a far more complex problem. But it seems like a good idea nonetheless.

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

Posted on May 10, 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.

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

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

The ZibdyHealth application

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

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

Figure 1. Zibdy discharge summary displayed on mobile device

Figure 1. Summary of visit in Zibdy

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

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

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

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

Tackling the data dilemma

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

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

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

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

    Figure 2. List of uploaded CCDs

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

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

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

Making Health Data Patient-Friendly

Posted on May 6, 2016 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.

Most of the efforts designed to make healthcare processes more transparent hope to make patients better shoppers. The assumption is that better-informed patients make better decisions, and that ultimately, if enough patients have the right data they’ll take steps which improve outcomes and lower the cost of care. And while the evidence for this assumption is sparse, the information may increase patient engagement in their care — and hopefully, their overall health.

That’s all well and good, but I believe too little attention has been paid to another dimension of transparency. To wit, I’d argue that it’s more than time to present patients with clinical data on a real- or near-real-time basis. Yes, shopping for the right doctor is good, but isn’t it even more important for patients to see what results he or she actually gets in their particular medical case?

Patients rarely get a well-developed look at their clinical data. Patient portals may offer access to test and imaging results from today through 10 years ago — my health system does — but offer no tools to put this data in context. If a patient wants to take a good look at their health history, and particularly, how test results correlate with their behavior, they’ll have to map the data out themselves. And that’s never going to work for your average patient.

Of course, there are obstacles to making this happen:

  • Physicians aren’t thrilled with the idea of giving patients broad healthcare data access. In fact, more than one doctor I’ve seen wouldn’t let me see test results until he or she had “approved” them.
  • Even if you set out to create some kind of clinical data dashboard, doing so isn’t trivial, at least if you want to see patients actually use it. Significant user testing would be a must to make this approach a success.
  • To my knowledge, no EMR vendor currently supports a patient dashboard or any other tools to help patients navigate their own data. So to create such an offering, providers would need to wait until their vendor produces such a tool or undertake a custom development project.

To some extent, the healthcare IT industry is already headed in this direction. For example, I’ve encountered mobile apps that attempt to provide some context for the data which they collect. But virtually all healthcare apps focus on just a few key indicators, such as, say calorie intake, exercise or medication compliance. For a patient to get a broad look at their health via app, they would have to bring together several sets of data, which simply isn’t practical.

Instead, why not give patients a broad look at their health status as seen through the rich data contained in an EMR? The final result could include not only data points, but also annotations from doctors as to the significance of trends and access to educational materials in context. That way, the patient could observe, say, the link between blood pressure levels, exercise, weight and med compliance, read comments from both their cardiologist and PCP on what has been working, and jump to research and education on cardiovascular health.

Ultimately, I’d argue, the chief obstacle to creating such an offering isn’t technical. Rather, it’s a cultural issue. Understandably, clinicians are concerned about the disruption such approaches might pose to their routine, as well as their ability to manage cases.

But if we are to make patients healthier, putting the right tools in their hands is absolutely necessary. And hey, after paying so much for EMRs, why not get more value for your money?

P.S. After writing this I discovered a description of a “digital health advisor” which parallels much of what I’m proposing. It’s worth a read!

No,The Patient Isn’t Disrupting Your Workflow!

Posted on February 26, 2016 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.

Just recently, I had a personal experience which highlighted a serious problem in how hospital staffers handle health IT workflow.

The backstory is as follows. I was dispatched to the emergency department of a local mid-sized community hospital after complaining of chest pain and shortness of breath. (Turned out it was an asthma attack, not a cardiovascular complication, but the on-call doc I spoke with wasn’t taking any chances.)

This hospital ED seems efficient and well-run. Moreover, the clinicians and techs are uniformly attentive, thorough and patient. In other words, I feel safe and well-cared-for there.

That being said, I had a few experiences during this ED visit which I suspect are endemic to the industry. No one of these issues seemed serious in and of themselves, but collectively they gave me the sense that my feedback on what I observed wasn’t welcome.

They included the following:

  • When I called attention to the fact that my blood pressure reading was unusually low (80/60) they dismissed the data as a blip and discouraged further discussion.
  • After the expected EKG to rule out cardiac concerns , staff left the leads attached to my skin to allow further testing if needed. Because the adhesive attaching the leads to my skin came loose now and then, you guessed it, alarms went off. When I suggested that the leads be either reattached or removed, the tech’s response translated to: “Honey, you have no business asking these questions.”
  • When I tried to find the results of the tests they were running via the MyChart app on my phone (yes, they’re an Epic shop), none of them were available, even though the doctors already had them.

None of these issues represent a staggering problem. My blood pressure did normalize, we handled the EKG lead stickiness issue without incident, and I did get my test results as soon as the doctor had them. I got a nebulizer treatment and some feedback on my overall health, and went home feeling much better.

That being said, I still find it unsettling that I was discouraged from taking note of what I saw and heard, and had no access to test results on the spot that would have put many of my concerns to rest.

More broadly, I object strenuously to the “doctor knows best” scenario that played out in this setting, at least where IT workflow was concerned:

  • While I understand completely that nurses and techs are besieged with needless noises and suffer from alarm fatigue, treating my response to those alarms as trivial doesn’t seem appropriate to me.
  • Failing to share data on the spot with me via the portal deprived me of the chance to discuss the data with my ED doctor. Instead, I only got to go over the data very quickly and mechanically with the nurse at discharge.

What bugs me, ultimately, is the intangible sense that I was perceived as a force breaking the IT workflow rather than a participant in it. This incident has convinced me that we need to transform the way HIT systems are designed, in a manner which brings the patient into the process of care. You clinicians need my eyes and ears to be on the case too.

Patient Engagement Distracts the Health Care Field From Reform (Part 2 of 2)

Posted on January 12, 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.

The previous segment of this article looked at the movement for patient engagement, or the patient experience. Now I’ll highlight a true reform in the health care system.

Patients Left Out in the Cold
What activist patients and doctors have been demanding for years is not engagement or a better experience, but a central role for the patient in choosing treatment and carrying it out when they leave the doctor’s office. Patient empowerment is the key to all the things doctors profess to care about, such as preventing readmissions. It’s even more critical with chronic diseases that have a lifestyle component, such as congestive heart failure and diabetes.

Some patients come to the clinical setting endowed with more education than others, or a personality suited to pushing back and demanding rights. But some fight for years for such basics as access to their records. I was dejected to read just a few weeks ago of an attempt to improve care in Rhode Island, endorsed no less by the American College of Physicians, that boasts about giving access to everybody except the patient to health records.

The American College of Physicians is concerned about the hypothetical patient who “doesn’t know the name of the peach-colored pill that the orthopedist prescribed.” That particular patient is clearly not asking for empowerment. But millions do keep track of their medications and deserve equal knowledge about the rest of the information about their medical condition. If the peach-colored pill had been recorded in a patient health record, accessible to the patient (or a responsible care-giver) wherever she goes, all the complex Health Information Exchange infrastructure praised in the article could go by the wayside. Another article describes an emerging PHR solution.

Another recent example of the disdain for patients comes in a complaint by AHIMA about the difficulties of matching records for a single patient. Duplicate records are undeniably a serious problem (as is information mistakenly entered in a different person’s record). But instead of recognizing the obvious solution of a PHR, all they can come up with is a universal identifier (which is a privacy risk as well as a target for security attacks) and more determined efforts to match patients the old-fashioned way.

Empowered patients have control over their own information. Doctors guide them to make reasonable choices that affect their health, which includes sharing those records. Empowered patients set their own goals and timetables. A grant of power and information to patients will inevitably empower and inform the other health professionals with whom those patients interact, leading to a learning health system and a true team approach to care.

What’s the difference?
As I eventually admitted, the movement for patient engagement offers many good ideas that can contribute not only to a better experience in the health care center but to patient empowerment and better outcomes. What I complain about is the motive behind patient engagement.

Let’s take patient portals. To proponents of patient engagement, it serves a few purposes related to public relations. The portal hopefully:

  • Indulges people’s preference for fast information, endearing them to the practice

  • Keeps them more “engaged,” meaning that they’ll come back and spend more money at the health care center.

  • Delivers information in more appealing ways (such as through video, when practices use it).

  • Takes routine tasks off the shoulders of staff, freeing them to do other things that improve the patient experience.

This poverty of vision is why most portals lack useful information that patients can use to actually improve their care. Discharge instructions are usually a crumpled page. Doctor notes are hidden away, available to malicious attackers more easily than to patients. Medical codes and raw numbers appear on the portal without further elucidation.

Modern health facilities use web sites along with text messaging, old-fashioned phone calls, and other tools as part of a strategy to keep patients on their treatment plans. They may have full discharge instructions, along with instructional videos for such important tasks as changing bandages, on a patient’s personal site. The patient is encouraged to report her progress along with any setbacks, and gets quick feedback when there is a change. Many face-to-face visits can be averted, and patients who can update their caretakers without leaving home are less likely to exhaust themselves at vulnerable times. The patient’s family members can easily keep up with changes and find out what they need to do, as can other professionals working on the case.

For every element of empowerment, there is a tawdry alternative that can be offered as “engagement.” That’s the risk in the patient experience movement. Unless the health care institutions start out with the philosophy of empowerment, it’s just another distraction from the work we need to do.