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E-Patient Update: The Patient Data Engagement Leader

Posted on October 20, 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.

As healthcare delivery models shift responsibility for patient health to the patients themselves, it’s becoming more important to give them tools to help them get and stay healthy. Increasingly, digital health tools are filling the bill.

For example, portals are moving from largely billing and scheduling apps to exchanging of patient data, holding two-way conversations between patient and doctor and even tracking key indicators like blood glucose levels. Wearables are slowly becoming capable of helping doctors improve diagnoses, and patterns revealed by big data should soon be used to create personalized treatment plants.

The ultimate goal of all this, of course, is to push as much data power as possible into the hands of consumers. After all, for patients to be engaged with their health, it helps to make them feel in control, and the more sophisticated information they get, the better choices they can make. Or at least that’s how the traditional script reads.

Now, as an e-patient, the above is certainly true for me. Every incremental improvement in the data I get me brings me closer to taking on otherwise overwhelming health challenges. That’s true, in part, because I’m comfortable reading charts, extrapolating conclusions from data points and visualizing ways to make use of the information. But if you want less tech-friendly patients to get on board, they’re going to need help.

The patient engagement leader

And where will that help come from? I’d argue that hospitals and clinics need to create a new position dedicated to helping engage patients, including though not limited to helping them make their health data their own. This position would cut across several disciplines, ranging from patient health education clinical medicine to data analytics.

The person owning this position would need to be current in patient engagement goals across the population and by disease/condition type, understand the preferred usage patterns established by the hospital, ACO, delivery network or clinic and understand trends in health behavior well enough to help steer patients in the right direction.

It also wouldn’t hurt if such a person had a healthy dose of marketing skills under their belt, as part of the patient engagement process is simply selling consumers on the idea that they can and should take more responsibility for their health outcomes. Speaking from personal experience, a good marketer can wheedle, nudge and empower people by turns, and this will be very necessary to boost your engagement.

While this could be a middle management position, it would at least need to have the full support of the C-suite. After all, you can’t promote population-wide improvements in health by nibbling around the edges of the problem. Such measures need to be comprehensive and strategic to the mission of the healthcare organization as a whole, and the person behind the needs to have the authority to see them through.

Patients in control

If things go right, establishing this position would lead to the creation of a better-educated, more-confident patient population with a greater sense of self efficacy regarding their health. While specific goals would vary from one healthcare organization to the other, such an initiative would ideally lead to improvements in key metrics such as A1c levels population-wide, drops in hospital admission and readmission rates and simultaneously, lower spending on more intense modes of care.

Not only that, you could very well see patient satisfaction increase as well. After all, patients may not feel capable of making important health changes on their own, and if you help them do that it stands to reason that they’ll appreciate it.

Ultimately, engaging patients with their health calls for participation by everyone who touches the patient, from techs to the physician, nurses to the billing department. But if you put a patient engagement officer in place, it’s more likely that these efforts will have a focus.

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.

Engaging Patients With Health Data Cuts Louisiana ED Overuse

Posted on September 15, 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.

Maybe I’m misreading things, but it seems to me that few health IT pros really believe we can get patients to leverage their own health data successfully. And I understand why. After all, we don’t even have clear evidence that patient portals improve outcomes, and portals are probably the most successful engagement tool the industry has come up with to date.

And not to be a jerk about it, but I bet you’d be hard-pressed to find HIT gurus who believed the state of Louisiana would lead the way, as the achingly poor southern state isn’t exactly known for being a healthcare thought leader.  As it so happens, though, the state has actually succeeded where highfalutin’ health systems have failed.

Over one year, the state has managed to generate a 23% increase in health IT use among at-risk patients, and also, a 10.2% decrease in non-emergent use of emergency departments by Medicaid managed care organization members, thank you very much.

So how did Louisiana’s top healthcare brass accomplish this feat? Among other things, they launched a HIE-enabled ED data registry, along with a direct-to-consumer patient engagement campaign. These efforts were done in partnership with the Louisiana Health Care Quality Forum, which developed statewide marketing plans for the effort (See John’s interview with the Louisiana Health Care Quality Forum for more details).

They must have created some snazzy marketing copy. As Healthcare IT News noted, between August 2015 and May 2016, patient portal use shot up 31%, consumer EHR awareness rose 23% and opt-in to the state’s HIE grew by 3%, Quality Forum marketer Jamie Martin told HIN.

Not only that, the number of patients asking for access to or copies of electronic health data increased by 12%, and the number of patients with current copies of their health information grew by 9%, Martin said.

This is great news for those who want to see patients buy in to the digital health paradigm. Though it’s hard to tell whether the state will be able to maintain the benefits it gained in its initial effort, it clearly succeeded in getting a substantial number of patients to rethink how they manage their care.

But (and I’m sorry to be a bit of a Debbie Downer), I was a bit disappointed when I saw none of the gains cited related to changing health behaviors, such as, say, an increase in diabetics getting retinal exams.

I know that I should probably be focused on the project’s commendable successes, and believe it or not, I do find them to be exciting. I’m just not sure that these kinds of metrics can be used as proxies for health improvement measures, and let’s face it, that’s what we need, right?

Study: Health IT Costs $32K Per Doctor Each Year

Posted on September 9, 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.

A new study by the Medical Group Management Association has concluded that that physician-owned multispecialty practices spent roughly $32,500 on health IT last year for each full-time doctor. This number has climbed dramatically over the past seven years, the group’s research finds.

To conduct the study, the MGMA surveyed more than 3,100 physician practices across the U.S. The expense number they generated includes equipment, staff, maintenance and other related costs, according to a press release issued by the group.

The cost of supporting physicians with IT services has climbed, in part, due to rising IT staffing expenses, which shot up 47% between 2009 and 2015. The current cost per physician for health IT support went up 40% during the same interval. The biggest jump in HIT costs for supporting physicians took place between 2010 and 2011, the period during which the HITECH Act was implemented.

Practices are also seeing lower levels of financial incentives to adopt EHRs as Meaningful Use is phased out. While changes under MACRA/MIPS could benefit practices, they aren’t likely to reward physicians directly for investments in health IT.

As MGMA sees it, this is bad news, particularly given that practices still have to keep investing in such infrastructure: “We remain concerned that far too much of a practice’s IT investment is tied directly to complying with the ever-increasing number of federal requirements, rather than to providing patient care,” the group said in a prepared statement. “Unless we see significant changes in the final rule, practice IT costs will continue to rise without a corresponding improvement in the care delivery process.”

But the MGMA’s own analysis offers at least a glimmer of hope that these investments weren’t in vain. For example, while it argues that growing investments in technologies haven’t resulted in greater administrative efficiencies (or better care) for practices, it also notes that more than 50% of responders to a recent MGMA Stat poll reported that their patients could request or make appointments via their practice’s patient portal.

While there doesn’t seem to be any hard and fast evidence that portals improve patient care across the board, studies have emerged to suggest that portals support better outcomes, in areas such as medication adherence. (A Kaiser Permanente study from a couple of years ago, comparing statin adherence for those who chose online refills as their only method of getting the med with those who didn’t, found that those getting refills online saw nonadherence drop 6%.)

Just as importantly – in my view at least – I frequently hear accounts of individual practices which saw the volume of incoming calls drop dramatically. While that may not correlate directly to better patient care, it can’t hurt when patients are engaged enough to manage the petty details of their care on their own. Also, if the volume of phone requests for administrative support falls enough, a practice may be able to cut back on clerical staff and put the money towards say, a nurse case manager for coordination.

I’m not suggesting that every health IT investment practices have made will turn to fulfill its promise. EHRs, in particular, are difficult to look at as a whole and classify as a success across the board. I am, however, arguing that the MGMA has more reason for optimism than its leaders would publicly admit.

Improving Clinical Workflow Can Boost Health IT Quality

Posted on August 18, 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.

At this point, the great majority of providers have made very substantial investments in EMRs and ancillary systems. Now, many are struggling to squeeze the most value out of those investments, and they’re not sure how to attack the problem.

However, according to at least one piece of research, there’s a couple of approaches that are likely to pan out. According to a new survey by the American Society for Quality, most healthcare quality experts believe that improving clinical workflow and supporting patients online can make a big diference.

As ASQ noted, providers are spending massive amounts of case on IT, with the North American healthcare IT market forecast to hit $31.3 by 2017, up from $21.9 billion in 2012. But healthcare organizations are struggling to realize a return on their spending. The study data, however, suggests that providers may be able to make progress by looking at internal issues.

Researchers who conducted the survey, an online poll of about 170 ASQ members, said that 78% of respondents said improving workflow efficiency is the top way for healthcare organizations to improve the quality of their technology implementations. Meanwhile, 71% said that providers can strengthen their health IT use by nurturing strong leaders who champion new HIT initiatives.

Meanwhile, survey participants listed a handful of evolving health IT options which could have the most impact on patient experience and care coordination, including:

  • Incorporation of wearables, remote patient monitoring and caregiver collaboration tools (71%)
  • Leveraging smartphones, tablets and apps (69%)
  • Putting online tools in place that touch every step of patient processes like registration and payment (69%)

Despite their promise, there are a number of hurdles healthcare organizations must get over to implement new processes (such as better workflows) or new technologies. According to ASQ, these include:

  • Physician and staff resistance to change due to concerns about the impact on time and workflow, or unwillingness to learn new skills (70%)
  • High cost of rolling out IT infrastructure and services, and unproven ROI (64%)
  • Concerns that integrating complex new devices could lead to poor interfaces between multiple technologies, or that haphazard rollouts of new devices could cause patient errors (61%)

But if providers can get past these issues, there are several types of health IT that can boost ROI or cut cost, the ASQ respondents said. According to these participants, the following HIT tools can have the biggest impact:

  • Remote patient monitoring can cut down on the need for office visits, while improving patient outcomes (69%)
  • Patient engagement platforms that encourage patients to get more involved in the long-term management of their own health conditions (68%)
  • EMRs/EHRs that eliminate the need to perform some time-consuming tasks (68%)

Perhaps the most interesting part of the survey report outlined specific strategies to strengthen health IT use recommended by respondents, such as:

  • Embedding a quality expert in every department to learn use needs before deciding what IT tools to implement. This gives users a sense of investment in any changes made.
  • Improving available software with easier navigation, better organization of medical record types, more use of FTP servers for convenience, the ability to upload records to requesting facilities and a universal notification system offering updates on medical record status
  • Creating healthcare apps for professional use, such as medication calculators, med reconciliation tools and easy-to-use mobile apps which offer access to clinical pathways

Of course, most readers of this blog already know about these options, and if they’re not currently taking this advice they’re probably thinking about it. Heck, some of this should already be old hat – FTP servers? But it’s still good to be reminded that progress in boosting the value of health IT investments may be with reach. (To get some here-and-now advice on redesigning EMR workflow, check out this excellent piece by Chuck Webster – he gets it!)

Patient Portal Security Is A Tricky Issue

Posted on April 25, 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.

Much of the discussion around securing health data on computers revolves around enterprise networks, particularly internal devices. But it doesn’t hurt to look elsewhere in assessing your overall vulnerabilities. And unfortunately, that includes gaps that can be exposed by patients, whose security practices you can’t control.

One vulnerability that gets too little attention is the potential for a cyber attack accessing the provider’s patient portal, according to security consultant Keith Fricke of tw-Security in Overland Park, Kan. Fricke, who spoke with Information Management, noted that cyber criminals can access portal data relatively easily.

For example, they can insert malicious code into frequently visited websites, which the patient may inadvertently download. Then, if your patient’s device or computer isn’t secure, you may have big problems. When the patient accesses a hospital or clinic’s patient portal, the attacker can conceivably get access to the health data available there.

Not only does such an attack give the criminal access to the portal, it may also offer the them access to many other patients’ computers, and the opportunity to send malware to those computers. So one patient’s security breach can become a victim of infection for countless patients.

When patients access the portal via mobile device, it raises another set of security issues, as the threat to such devices is growing over time. In a recent survey by Ponemon Institute and CounterTack, 80% of respondents reported that their mobile endpoints have been the target of malware the past year. And there’s little doubt that the attacks via mobile device will more sophisticated over time.

Given how predictable such vulnerabilities are, you’d think that it would be fairly easy to lock the portals down. But the truth is, patient portals have to strike a particularly delicate balance between usability and security. While you can demand almost anything from employees, you don’t want to frustrate patients, who may become discouraged if too much is expected from them when they log in. And if they aren’t going to use it, why build a patient portal at all?

For example, requiring a patient to change your password or login data frequently may simply be too taxing for users to handle. Other barriers include demanding that a patient use only one specific browser to access the portal, or requiring them to use digits rather than an alphanumeric name that they can remember. And insisting that a patient use a long, computer-generated password can be a hassle that patients won’t tolerate.

At this point, it would be great if I could say “here’s the perfect solution to this problem.” But the truth is, as you already know, that there’s no one solution that will work for every provider and every IT department. That being said, in looking at this issue, I do get the sense that providers and IT execs spend too little time on user-testing their portals. There’s lots of room for improvement there.

It seems to me that to strike the right balance between portal security and usability, it makes more sense to bring user feedback into the equation as early in the game as possible. That way, at least, you’ll be making informed choices when you establish your security protocols. Otherwise, you may end up with a white elephant, and nobody wants to see that happen.

Medical Website Design: Jedi Credibility via Technology

Posted on March 17, 2016 I Written By

Medical Website Design
In the case of a medical emergency, a successful clinical portal has to meet the following two conditions at once: it should pop up in the back of the person’s mind and at the front of search results. To achieve this level of influence, your medical website’s design needs that wicked Jedi mind power to attract visitors, engage them and make them come back again and again.

A resource’s ultimate goal is to become a patient’s Master Yoda guide to the twists and turns of their health. A great medical website is able to meet patients halfway, educate and comfort them, and leave them more confident about their well-being.

Supported by cutting-edge technologies and breakthroughs, healthcare is one of the most important industries for human lives. Unfortunately, only examination and treatment are subject to first-priority innovation (for example, in vitro diagnostic medical equipment developments). So, persuading a caregiver to revamp or optimize their medical website can be challenging, as this effort is far outside their focal point.

So, the first question is – why should health providers pay extra attention to their websites?

An integral part of the Meaningful Use criteria, patient engagement, encourages individuals to contribute to their own well-being, thus reducing readmissions and improving care outcomes.

And the first tool to provide effective patient engagement – hug your patients at the doorstep, shake their hands and lead them into a physician’s office  –  is your website.

We’ve gone through a number of top clinical websites and noticed that they have several common characteristics. These are only some key features, but they will help your medical website stand out from other health resources.

1. Designed to Persuade and Help

Master Yoda sas, at the head of every clinical portal user interface should be, patients are most in need of humane and friendly words empowered with:

  • Responsive design
  • Straightforward navigation
  • Credible messages that speak directly to patients
  • Comprehensive and illustrated service descriptions
  • Moderate use of medical jargon

We put responsive design at the top as Healthcare IT News states that mobile healthcare technology makes NIH’s (National Institutes of Health) list of 14 goals for the next 5 years.  Moreover, mHealth technologies correlate with ACA’s plan to reduce excessive preventable readmissions. And, finally, Medicare spends more than $17 billion on avoidable readmissions annually.

Should any acute situation occur, a person might find themselves under an extreme pressure, panicky and irrational. What’s in their hands right now, a mouse or a phone? You can guess it. So, either the website is flawless across devices or you are blamed for falling short of the person’s expectations at the moment of utmost need.

2. Content Personalization. Jedi or Sith?

Content personalization is the light saber of a medical website. Without this influential tool, the resource is standing at the crossroads while needing to choose a side. If you decide to go on with the light side, get ready to accept the robe, the saber and the following consequences.

The Jedi side is the right personalization. You don’t overuse it, you’re careful, respectful and – what is most important – precisely targeted. Personalization is about picking and using the right details to bring patients what they need. So, you improve your revenue while nurturing and caring about your patients through:

  • Relevant services shown according to the patient’s previous visits. For example, if an individual has checked some information about implant dentistry or plastic surgery on your website, during the next visit they can continue where they left off via the recently visited section.
  • Clinic locations search offering the closest facilities first
  • Pages providing personalized promotions
  • Loyalty systems with cumulative discounts, bonus points and other incentives

To efficiently personalize content, medical websites can use patients’ personal information, such as:

  • EHR/EMR system health data (we make sure they are compliant with HIPAA rules)
  • Browsing history from previous visits
  • Current browsing behavior
  • And the trickiest part: information about family members

On the other hand, the wrong personalization makes your website a Sith, undermining the promising relations with patients and making them apprehensive about the service quality of the whole medical practice. If a barren woman opens a website and sees a page offering a personalized discount on fetal ultrasound, she might feel insulted and even mocked. She may even consider abandoning this medical provider.

3. Protected Functionality Starships

We consider the patient portal as a very important, next-to-mandatory element of a medical website. Patients want to have health data at their fingertips, and secure. Privacy must be at the core of patient portals. From resource to resource, secure features typically include:

  • Appointment scheduling options
  • Examination results
  • Diagnoses
  • Prescriptions and medication refill request form
  • Online billing

Again, this is just the basic scope serving most patients’ needs. We are sure that only through further customization with careful research and testing a medical provider can highlight the more peculiar details that enable an open dialogue with patients.

Jedi Website: Credibility via Technology

What do your patients need? Usability that won’t let them down in acute situations, access to health data, and personalized offers embedded into a protected system. Being able to communicate with physicians and track down their current treatment progress and lab results, patients feel more confident and empowered.

By shedding the light on the health problem, showing care and attention and giving the patient the needed information, you are creating a forceful halo of engagement. So let’s create a useful patient portal, include personalization and ensure responsive design with a friendly UI. That’s what transforms a medical website into a Master Yoda.

By Vadzim Belski, PHP Department Coordinator at a software development company ScienceSoft. With over 10 years of experience, he has taken part in large-scale web projects with a primary focus on the healthcare industry.

Patient Engagement Panel – Inaugural Online Medical Conference

Posted on September 11, 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.

John Bennett, MD reached out to me recently about a unique opportunity to be part of the 1st International Online BioMedical Conference. The conference was unique because it was being organized completely online using Google Hangouts as the platform for speakers. Having done a number of Google Hangouts on Healthcare IT myself, I thought it would be a unique opportunity to test out the online conference waters.

As part of the conference, I brought together a panel of social media and healthcare IT rockstars to talk about Patient Engagement (in all its facets) and the challenges of patient engagement. Plus, I wanted to be sure we talked about how it could help and hinder care. On the panel were Colin Hung (@Colin_Hung), Dr. Nick Van Terheyden (@DrNic1), Dr. Charles Webster(@wareflo), and myself (@ehrandhit). With such a wide set of experiences, it made for a really great discussion. You can watch it below:

Thanks to each of my fellow panelists for participating with me and to Manuel and Dr. Bennett who organized the conference.

Is HIPAA Misuse Blocking Patient Use Of Their Data?

Posted on August 18, 2015 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, a story in the New York Times told some troubling stories about how HIPAA misunderstandings have crept into both professional and personal settings. These included:

  • A woman getting scolded at a hospital in Boston for “very improper” speech after discussing her husband’s medical situation with a dear friend.
  • Refusal by a Pennsylvania hospital to take a daughter’s information on her mother’s medical history, citing HIPAA, despite the fact that the daughter wasn’t *requesting* any data. The woman’s mother was infirm and couldn’t share medical history — such as her drug allergy — on her own.
  • The announcement, by a minister in California, that he could no longer read the names of sick congregants due to HIPAA.

All of this is bad enough, particularly the case of the Pennsylvania refusing to take information that could have protected a helpless elderly patient, but the effects of this ignorance create even greater ripples, I’d argue.

Let’s face it: our efforts to convince patients to engage with their own medical data haven’t been terribly successful as of yet. According to a study released late last year by Xerox, 64% of patients were not using patient portals, and 31% said that their doctor had never discussed portals with them.

Some of the reasons patients aren’t taking advantage of the medical data available to them include ignorance and fear, I’d argue. Technophobia and a history of just “trusting the doctor” play a role as well. What’s more, pouring through lab results and imaging studies might seem overwhelming to patients who have never done it before.

But that’s not all that’s holding people back. In my opinion, the climate of medical data fear HIPAA misunderstandings have created is playing a major part too.

While I understand why patients have to sign acknowledgements of privacy practices and be taught what HIPAA is intended to do, this doesn’t exactly foster a climate in which patients feel like they own their data. While doctor’s offices and hospitals may not have done this deliberately, the way they administer HIPAA compliance can make medical data seem portentous, scary and dangerous, more like a bomb set to go off than a tool patients can use to manage their care.

I guess what I’m suggesting is that if providers want to see patients engaged and managing their care, they should make sure patients feel comfortable asking for access to and using that data. While some may never feel at ease digging into their test results or correcting their medical history, I believe that there’s a sizable group of patients who would respond well to a reminder that there’s power in doing so.

The truth is that while most providers now give patients the option of logging on to a portal, they typically don’t make it easy. And heaven knows even the best-trained physician office staff rarely take the time to urge patients to log on and learn.

But if providers make the effort to balance stern HIPAA paperwork with encouraging words, patients are more likely to get inspired. Sometimes, all it takes is a little nudge to get people on board with new behavior. And there’s no excuse for letting foolish misinterpretations of HIPAA prevent that from happening.

Transferring Custody of a Chart to the Patient – Could That Drive Patient Engagement?

Posted on August 11, 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.

I recently wrote about the concept of health information disposal and how we’re going to have to reevaluate how we approach disposing of patients charts in this new digital world. Plus, EHR vendors are going to have to build the functionality to make it a reality. However, some replied to that article that in this new world we shouldn’t ever dispose of charts.

We’ll leave that argument for that article (or in the comments) and instead discuss another concept that Deborah Green from AHIMA told me about. Deborah suggested that one possible solution for digital chart disposal would be to transfer custody of the chart to the patient. I think that terminology might not sit right with some people since the patient should have access to the chart regardless. However I think the word custody has a slightly different meaning.

When a healthcare organization is ready to dispose of an electronic chart based on their record retention laws (which usually vary by state), then it’s the perfect time to give patients the opportunity to download and retain a copy of their paper chart before it’s destroyed. In that way, the healthcare organization could worry less about deleting the electronic chart since they’ve transferred “custody” of the chart to the patient.

This removes the responsibility of storing the patient chart from the healthcare organization and puts it on the patients that want to have their entire medical chart. The perfect custodian of the patient chart is the patient. At least it should be.

I wonder if a healthcare organization informing patients that their old charts will be deleted would be enough to actually drive patient engagement and download of their electronic record. While meaningful use has required the view, download and transmit of records by patients, most people have been gaming that requirement without patients really getting the benefit. I have a feeling that patients hearing the words “deleted chart” would wake a lot of them up from their slumber. They wouldn’t know why they’d want the paper chart, but I imagine many would take action and preserve their medical record. Once they download the chart, it would be the first step towards actually engaging with their health data.

What do you think? Is transferring custody of the electronic record the right approach to health information disposal? Would this drive a new form of patient engagement? Would it wake up the sleeping giant which is involved patients?