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Validic Survey Raises Hopes of Merging Big Data Into Clinical Trials

Posted on September 30, 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.

Validic has been integrating medical device data with electronic health records, patient portals, remote patient monitoring platforms, wellness challenges, and other health databases for years. On Monday, they highlighted a particularly crucial and interesting segment of their clientele by releasing a short report based on a survey of clinical researchers. And this report, although it doesn’t go into depth about how pharmaceutical companies and other researchers are using devices, reveals great promise in their use. It also opens up discussions of whether researchers could achieve even more by sharing this data.

The survey broadly shows two trends toward the productive use of device data:

  • Devices can report changes in a subject’s condition more quickly and accurately than conventional subject reports (which involve marking observations down by hand or coming into the researcher’s office). Of course, this practice raises questions about the device’s own accuracy. Researchers will probably splurge for professional or “clinical-grade” devices that are more reliable than consumer health wearables.

  • Devices can keep the subject connected to the research for months or even years after the end of the clinical trial. This connection can turn up long-range side effects or other impacts from the treatment.

Together these advances address two of the most vexing problems of clinical trials: their cost (and length) and their tendency to miss subtle effects. The cost and length of trials form the backbone of the current publicity campaign by pharma companies to justify price hikes that have recently brought them public embarrassment and opprobrium. Regardless of the relationship between the cost of trials and the cost of the resulting drugs, everyone would benefit if trials could demonstrate results more quickly. Meanwhile, longitudinal research with massive amounts of data can reveal the kinds of problems that led to the Vioxx scandal–but also new off-label uses for established medications.

So I’m excited to hear that two-thirds of the respondents are using “digital health technologies” (which covers mobile apps, clinical-grade devices, and wearables) in their trials, and that nearly all respondents plan to do so over the next five years. Big data benefits are not the only ones they envision. Some of the benefits have more to do with communication and convenience–and these are certainly commendable as well. For instance, if a subject can transmit data from her home instead of having to come to the office for a test, the subject will be much more likely to participate and provide accurate data.

Another trend hinted at by the survey was a closer connection between researchers and patient communities. Validic announced the report in a press release that is quite informative in its own right.

So over the next few years we may enter the age that health IT reformers have envisioned for some time: a merger of big data and clinical trials in a way to reap the benefits of both. Now we must ask the researchers to multiply the value of the data by a whole new dimension by sharing it. This can be done in two ways: de-identifying results and uploading them to public or industry-maintained databases, or providing identifying information along with the data to organizations approved by the subject who is identified. Although researchers are legally permitted to share de-identified information without subjects’ consent (depending on the agreements they signed when they began the trials), I would urge patient consent for all releases.

Pharma companies are already under intense pressure for hiding the results of trials–but even the new regulations cover only results, not the data that led to those results. Organizations such as Sage Bionetworks, which I have covered many times, are working closely with pharmaceutical companies and researchers to promote both the software tools and the organizational agreements that foster data sharing. Such efforts allow people in different research facilities and even on different continents to work on different aspects of a target and quickly share results. Even better, someone launching a new project can compare her data to a project run five years before by another company. Researchers will have millions of data points to work with instead of hundreds.

One disappointment in the Validic survey was a minority of respondents saw a return on investment in their use of devices. With responsible data sharing, the next Validic survey may raise this response rate considerably.

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.

What Data Do You Need in Order to Guide Behavioral Change?

Posted on June 2, 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.

This is an exciting time for the health care field, as its aspirations toward value-based payments and behavioral responses to chronic conditions converge on a more and more precise solution. Dr. Joseph Kvedar has called this comprehensive approach connected health and has formed both a conference and a book around it. BaseHealth, a predictive analytics company in healthcare, has teamed up with TriVita to offer a consumer-based service around this approach, which combines access to peer-reviewed research with fine-tuned guidance that taps into personal health and behavioral data and leverages the individual interests of each participant.

I have previously written about BaseHealth’s assessment engine, which asks individuals for information about their activities, family history, and health conditions in order to evaluate their health profile and risk for common diseases. TriVita is a health coaching service with a wide-ranging assessment tool and a number of products, including cutely named supplements such as Joint Complex and Daily Cleanse. TriVita’s nutritionists, exercise coaches, and other staff are overseen by physicians, but their service is not medical: it does not enter the heavily regulated areas where clinicians practice.

I recently talked with BaseHealth’s CEO, Prakash Menon, and Dan Hoemke, its Vice President of Business Development. They describe BaseHealth’s predictive analytics as input that informs TriVita’s coaching service. What I found interesting is the sets of data that seem most useful for coaching and behavioral interventions.

In my earlier article, I wrote, “BaseHealth has trouble integrating EHR data.” Menon tells me that getting this data has become much easier over the past several months, because several companies have entered the market to gather and combine the data from different vendors. Still, BaseHealth focuses on a few sources of medical data, such as lab and biometric data. Overall, they focus on gathering data required to identify disease risk and guide behavior change, which in turn improves preventable conditions such as heart disease and diabetes.

Part of their choice springs from the philosophy driving BaseHealth’s model. Menon says, “BaseHealth wants to work with you before you have a chronic condition.” For instance, the American Diabetes Association estimated in 2012 that 86 million Americans over the age of 20 had prediabetes. Intervening before these people have developed the full condition is when behavioral change is easiest and most effective.

Certainly, BaseHealth wants to know your existing medical conditions. So they ask you about them when you sign up. Other vital signs, such as cholesterol, are also vital to BaseHealth’s analytics. Through a partnership with LabCo, a large diagnostics company in Europe, they are able to tap into lab systems to get these vital signs automatically. But users in the United States can enter them manually with little effort.

BaseHealth is not immune to the industry’s love affair with genetics and personalization, either. They take about 1500 genetic factors into account, helping them to quantify your risk of getting certain chronic conditions. But as a behavioral health service, Menon points out, BaseHealth is not designed to do much with genetic traits signifying a high chance of getting a disease. They deal with problems that you can do something about–preventable conditions. Menon cites a Health 2.0 presentation (see Figure 1) saying that our health can, on average, be attributed 60 percent to lifestyle, 30 percent to genetics, and 10 percent to clinical interventions. But genetics help to show what is achievable. Hoemke says BaseHealth likes to compare each person against the best she can be, whereas many sites just compare a user against the average population with similar health conditions.

Relative importance of health factors

Figure 1. Relative importance of health factors

BaseHealth gets most of its data from conditions known to you, your environment, family history, and more than 75 behavioral factors: your activity, food, over-the-counter meds, sleep activity, alcohol use, smoking, several measures of stress, etc. BaseHealth assessment recommendations and other insights are based on peer-reviewed research. BaseHealth will even point the individual to particular studies to provide the “why” for its recommendations.

So where does TriVita fit in? Hoemke says that BaseHealth has always stressed the importance of human intervention, refusing to fall into the fallacy that health can be achieved just through new technology. He also said that TriVita fits into the current trend of shifting accountability for health to the patient; he calls it a “health empowerment ecosystem.” As an example of the combined power of BaseHealth and TriVita, a patient can send his weight regularly to a coach, and both can view the implications of the changes in weight–such as changes in risk factors for various diseases–on charts. Some users make heavy use of the coaches, whereas others take the information and recommendations and feel they can follow their plan on their own.

As more and more companies enter connected health, we’ll get more data about what works. And even though BaseHealth and TriVita are confident they can achieve meaningful results with mostly patient-generated data, I believe that clinicians will use similar techniques to treat sicker people as well.

Patient Engagement Will Be Key to Personalized Medicine and Healthcare Analytics

Posted on February 16, 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.

When I wrote about personalized medicine solutions that are available today, I mostly covered the data aspects of personalized medicine. It’s a logical place to start since the basis of personalized medicine is data. In that post I highlighted the SAP Foundation for Health and the SAP Hana platform along with the work of ASCO and their CancerLinQ project. No doubt there are hundreds of other examples around health care where data is being used to personalize the care that’s provided.

It makes a lot of sense for a company like SAP to take on the data aspects of personalized medicine. SAP is known for doing massive data from complex data sets. They’re great at sorting through a wide variety of data from multiple sources and they’re even working on new innovations where they can analyze your data quickly and effectively without having to export every single piece of data to some massive (Translation: Expensive) enterprise data warehouse. Plus, in many cases they’re doing all of this health data analytics in the cloud so you can be sure that your healthcare analytics solution can scale. While this is a huge step forward, it is just the start.

As I look at the discussion around personalized medicine, what seems to be missing is a focus on creating a connection with the patient. Far too often, analytics vendors in healthcare just want to worry about the data analysis and don’t build out the tools required to engage with the patient directly. This leads to poor patient engagement in two ways: improving patient communication and collecting patient data.

Improving Patient Communication
As we look into the future of reimbursement in healthcare, it’s easy to see how crucial it will be to leverage the right data to identify the right patients. However, you can’t stop there. Once you’ve identified the right patients, you have to have a seamless and effective way to regularly communicate with that patient. As value based reimbursement becomes a reality, no healthcare analytics solution will be complete without the functionality to truly engage with the patient and improve their health.

Patient engagement platforms will require the following three fundamentals to start improving care: interaction between patient and caregiver, privacy, and security. No doubt we’re already starting to see a wide variety of approaches to how you’ll communicate with and engage the patient. However, if you don’t get these three fundamentals down then all of the rest doesn’t really matter. The basis of improved patient communication is going to be efficient communication between patient and caregiver in a secure and private manner.

Collecting Patient Data
Too many analytics platforms only focus on the data that comes from the healthcare providers like the EHR. As the health sensor market matures, more and more clinically relevant data is going to be generated by the patient and the devices they use at home. In fact, in some areas like diabetes this is already happening. Over the next 5 years we’re going to start seeing this type of patient generated data spread across every disease state.

Health analytics platforms of the future are going to have to be able to handle all of this patient generated health data. The key first step is to make it easy for the patient to connect their health devices to your platform. The second step is to convert this wave of patient generated health data into something that can easily be consumed by the healthcare provider. Both steps will be necessary for personalized medicine to become a reality in health care.

As we head into HIMSS 2016 in a couple weeks, I’ll be looking at which vendors are taking analytics to the next level by including patient engagement. While there’s a lot of value in processing healthcare provider data, the future of personalized medicine will have to include the patient in both how we communicate with them and how we incorporate the data they collect the 99% of their lives spent outside of the hospital.

SAP is uniquely positioned to help advance personalized medicine. The SAP Foundation for Health is built on the SAP Hana platform which provides scalable cloud analytics solutions across the spectrum of healthcare. SAP is a sponsor of Influential Networks of which Healthcare Scene is a member. You can learn more about SAP’s healthcare solutions during #HIMSS16 at Booth #5828.

Beyond the Buzz: The Myths and Realities of Consumer and Patient Engagement

Posted on September 29, 2015 I Written By

The following is a guest blog post by Peter Edelstein, MD, is the Chief Medical Officer at Elsevier.
Peter Edelstein, MD
Today’s healthcare reform world is filled with buzzwords.  “Population Health Management.”  “Value-Based Care.”  “Patient Engagement.”  I am in no way suggesting that these topics do not play critical roles if we are to realize the enormous potential of healthcare reform.  However, if you ask ten people to define any one of these buzzwords, you’ll receive twelve different definitions.  And in a world of threatening reimbursement penalties and expanding healthcare legislation, the sooner that we come to some consensus on the basic meaning of these terms, the sooner we can understand the associated myths and realities.

Relative to the patient population (that is, the general population), the population of providers (doctors, nurses, and other clinicians) represents a fairly homogeneous and small group to target with initial reform efforts.  In addition, we are all painfully aware of the unacceptable number of preventable deaths and complications which occur at the hands of providers each and every day.  Thus reform legislation has first focused on reducing variability, elevating quality, and controlling the cost of care delivery through programs focused on providers (hospitals and healthcare systems, as well as the physicians, nurses, other clinicians who work in such institutions). 

Again, this makes sense as a starting point.  That said, to believe that we will achieve our ultimate goals of evolving into a system dominated by preventative care and outpatient and home health maintenance (leaving hospitals to serve only those whose chronic conditions can no longer be controlled in the outpatient setting) solely by changing how providers deliver care is a myth of epic proportions.  Far-and-away our greatest opportunity to shift our population’s health from reactive, acute, and expensive to proactive, preventative, and cost-efficient is by directly engaging and educating and empowering the general population of patients and future patients themselves. 

This perspective is based on two major realities.  First, studies (as well as our own experience) confirms that even individuals with chronic conditions spend on average only a handful of hours annually in front of a professional care provider.  (How many hours did you or your spouse spend under the direct care of a provider in the previous twelve months?  For the overwhelming majority of you, the answer is less than a couple.)  Second, patients who demonstrate interest in and ownership of their health have better clinical outcomes and reduced costs of care.  In a nutshell, people spend virtually all of their lives away from doctors, nurses, and hospitals, and as with virtually any complex processes, those who are more involved and knowledgeable have better outcomes.

Now we come up against another reality:  limited resources.  Hospitals and healthcare systems have limited staff and finances, and Patient Engagement often draws the short straw when competing with electronic health records, computerized order sets, and other provider-specific support solutions.  But, as I’ve suggested, de-prioritizing Patient Engagement as “less important” or “less impactful” is a myth which greatly limits our potential to increase the value (elevate quality/reduce costs) of healthcare delivery.  Thus, the most important first step for healthcare stakeholders to accept is the reality that assigning resources to Patient Engagement must be as great a priority (if not greater) as allocating staff and money to products and solutions which target only traditional providers.

Once healthcare leaders accept the critical importance of Patient Engagement, they again have to consider their limited resources.  It is another common and perilous myth when trying to allocate resources and develop and implement Patient Engagement strategies to consider all patients within a healthcare system’s catchment area as a homogeneous population.  The reality here is that not all individuals have the same potential for or barriers to becoming engaged patients.  And understanding with which patient subpopulations you can get “the most bang for your buck” is a necessity which is often overlooked. 

For example, any of us who have directly cared for a large cohort of patients knows that there are some individuals (comprising a patient subpopulation) who simply have no intention of ever lifting a finger to care for themselves.  I think about the roughly 50% of Americans with chronic conditions who fail to take their medications as prescribed.  Or the diabetics who simply cannot be troubled with checking their blood sugars.  Every provider can immediately call to mind dozens of patients who, understanding how to better their own health, simply refuse to do so.  The reality is that as in all areas of life, there are simply some people who just will not engage, be accountable, take ownership.  To waste valuable resources trying to engage this patient subpopulation is foolish, disillusioning for staff, and wasteful, and it is best to quickly identify these individuals and accept that all you can do is provide reactive care when they become ill.

A second and large patient subpopulation is well worth the resources and efforts to engage.  These are the folks with limited literacy and numeracy skills.  Multiple studies have demonstrated the inverse relationship between literacy and healthcare outcomes.  Thus, assigning resources to clearly engage and educate these individuals so that they have the knowledge and understanding necessary to engage is worthwhile.

The third large patient subpopulation worth targeting is comprised of people whose upbringing or culture serves as a barrier to engagement.  Perhaps the largest of these cohorts is elderly Americans, many of whom were raised never to question a physician or ask for clarification.  Such patients are unable to engage because they refuse to address their lack of understanding of recommendations for their self care.  Another large faction are those who were raised in cultures (often outside of the United States) where, as with elderly Americans, the provider is God, never to be questioned.  Thus, these folks don’t really understand what they can do to improve their health, and they refuse to ask for further clarification.

The reality for these two large patient subpopulations is that the appropriate use of resources to understand and directly address the obstacles to true engagement and education can result in great successes.

In the end, our ability to achieve truly dramatic and impactful healthcare reform depends to a great extent on engaging and educating the patients of today and tomorrow.  Appreciating this reality, and understanding the realities related to identifying patient subpopulations which can truly be engaged and educated is the best approach to achieving successful reform.

About Peter Edelstein, MD
Peter Edelstein, MD, is the Chief Medical Officer at Elsevier. Edelstein is board certified by the American College of Surgeons and the American Society of Colon and Rectal Surgery. He has more than 35 years of experience practicing medicine and in healthcare administration. Edelstein was in private practice for several years before serving on the surgical faculty at Stanford University, where he focused on gastrointestinal, oncologic and trauma surgery. He then spent more than a decade as an executive in the Silicon Valley medical device industry. Edelstein’s most recent role was as Chief Medical Officer for the healthcare business at LexisNexis Risk Solutions, a Reed Elsevier company. He is also the author of the recently published book, ‘Own Your Cancer: A Take-Charge Guide for the Recently Diagnosed & Those Who Love Them’.

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.

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?

Patients Demand the Best Care … for Their Data

Posted on June 22, 2015 I Written By

The following is a guest blog post by Art Gross, Founder of HIPAA Secure Now!.
Art Gross Headshot
Whether it’s a senior’s first fitting for a hearing aid, or a baby boomer in for a collagen injection, both are closely scrutinizing new patient forms handed to them by the office clerk.  With 100 million medical records breached and stolen to date, patients have every reason to be reluctant when they’re asked to fill out forms that require their social security number, driver’s license, insurance card and date of birth — all the ingredients for identity fraud.  Patients are so squeamish about disclosing their personal information, even Medicare has plans to remove social security numbers on patients’ benefits cards.

Now patients have as much concern about protecting their medical records as they do about receiving quality care, and they’re getting savvy about data protection.  They have every right to be assured by their physician that his practice is as concerned about their privacy as he is about their health.

But despite ongoing reports of HIPAA violations and continuous breaking news about the latest widespread patient data breach, medical practices continue to treat ePHI security as a lesser priority.  And they neglect to train front office staff so the patient who now asks a receptionist where the practice stores her records either gets a quizzical look, or is told they’re protected in an EHR but doesn’t know how, or they’re filed in a bank box in “the back room” but doesn’t know why.

In some cases, the practice may hide the fact that office staff is throwing old paper records in a dumpster.  Surprisingly this happens over and over.  Or, on the dark side, the receptionist accesses the EHR, steals patients’ social security numbers and other personal information and texts them to her criminal boyfriend for medical identity theft.

Another cybercrime threatening medical practices comes from hackers who attack a server through malware and encrypt all the medical files.  They hold the records hostage and ask for ransoms.  Medical records can vanish and the inability to access critical information about a patient’s medical condition could end up being life threatening.

Physicians should not only encrypt all mobile devices, servers and desktops, regularly review system activity, back up their servers and have a disaster recovery plan in place, etc. they should also share their security practices and policies with the patient who asks how his office is protecting her records.

Otherwise, the disgruntled patient whose question about security is dismissed won’t only complain to her friends over coffee, she’ll spread the word on Facebook.  Next time a friend on Facebook asks for a referral the patient tells her not to go to her doctor — not because he’s an incompetent surgeon but because he doesn’t know the answer when she asks specifically if the receptionist has unlimited access to her records.

And word gets out through social media that the practice is ‘behind the times.’  The doctor earns a reputation for not taking the patient’s question seriously, and for not putting the proper measures in place to secure the patient’s data.  This is the cockroach running through the restaurant that ends up on YELP.

It’s time to pull back the curtain and tell patients how you’re protecting their valuable data.  Hand them a HIPAA security fact sheet with key measures you’ve put in place to gain their confidence.  For example, our practice:

  • Performs annual risk assessments, with additional security implemented, including encryption and physical security of systems that contain patient information.
  • Shows patients that the organization has policies and procedures in place
  • Trains employees on how to watch for risks for breaches
  • Gives employees limited access to medical records
  • Backups systems daily
  • Performs system activity regularly

Practices that communicate to patients how they are protecting their information, whether it’s provided by the front office staff, stated in a fact sheet or displayed on their websites, not only instills confidence and maintains their reputations, they actually differentiate themselves in the market place and attract new patients away from competitors.

About Art Gross
Art Gross co-founded Entegration, Inc. in 2000 and serves as President and CEO. As Entegration’s medical clients adopted EHR technology Gross recognized the need to help them protect patient data and comply with complex HIPAA security regulations. Leveraging his experience supporting medical practices, in-depth knowledge of HIPAA compliance and security, and IT technology, Gross started HIPAA Secure Now! to focus on the unique IT requirements of medical practices. Email Art at artg@hippasecurenow.com.

Full Disclosure: HIPAA Secure Now! is an advertiser on EMR and HIPAA.

Healthcare Big Data Use, Real Patient Engagement, and Practice Marketing

Posted on May 5, 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 use to do these a lot more and I think people enjoyed them. So, maybe I’ll start doing them again. It’s basically a short Twitter round up of some interesting tweets and often some pithy commentary about the tweets. Let me know what you think.


This seems about in line with my own personal experience talking to people. Although, some might argue that 100% are clueless. We’re all still trying to figure out all the data.


Great article by Michelle. I agree with her that I hate patient engagement. I love engaging patients, but I think that meaningful use requirements have forever corrupted the term patient engagement. We better move on to a new term, because I assure you that what’s happening with meaningful use is not engaging patients.


This is a little self serving, but Wednesday (5/6/15) I’ll be doing a webinar on the topic of practice marketing. I’m going to cover quite a bit of ground from a high quality practice website, to search engine optimization (SEO), reputation management, and meaningful patient engagement (sorry I had to use the term after my last comment). I hope many of you will attend and then let me know what you thought of it.

13 Insights for Conquering Healthcare Challenges

Posted on April 30, 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 was recently asked to take part in a “From the Experts” series where they asked us to contribute an insight into how you conquer the healthcare challenges of the future. My response was, “The most valuable prep for #valuebasedcare is to create deep patient connections.” I think that’s still really good advice for healthcare organizations.

Check out the other 12 insights from a wide variety of experts in this embedded slideshare below: