It has only been about two generations since traveling medicine shows were common forums for medical information. Phony research and medical claims were used to back up the sale of all kinds of dubious medicines. Potential patients had no real method to determine what was true or false, let alone know what their real medical issues were.
Healthcare has come a long way since those times, but similar to the lack of knowing the compositions of past medical concoctions and what ailed them, today’s digital age patients still don’t know what is in their medical records. They need transparency, not secret hospital –vendor contracts and data blocking, like the practices being questioned by the New York Times. One patient, Regina Holliday resorts to using art to bring awareness to the lack of patient’s access to their own medical records.
There are many reasons patients want access. Second opinions, convenience, instant access in a medical emergency and right of ownership—I paid for them, I own them. Other reasons patients need to view their records is for accuracy and validity. Inaccurate record keeping has even caused the EHRI Institute to cite incorrect or missing data in EHRs and other health IT systems as the second highest safety concern in its annual survey, outlining the Top Ten Safety Concerns for Healthcare Organizations in 2015.
Healthcare system executives, from CIOs to CEOs are very aware of the increasing requirements from patients asking for their records and the various state and federal laws that come into play. However, they are also aware that by making it too easy for patients to access records they risk liability and HIPAA issues. They also don’t want to provide documents that can easily enable cost comparisons or raise questions about charges.
Riding the wave of interest in accessing personal medical records are organizations like Get My Health Data. Org. The organization was founded in June 2015 as a collaborative effort among leading consumer organizations, healthcare experts, former policy makers and technology organizations that believe consumer access to digital health information is an essential cornerstone for better health and better care, coordinated by the National Partnership for Women & Families, a non-profit consumer organization. On July 4 it launched #DataIndependenceDay to create awareness for the HIPAA law which states that patients must be granted access to their health information with very few exceptions. An update to those laws that was finalized in 2013 extends these rights to electronic health records.
Despite the introduction of personal health records (PHRs), Blue Button technology and product introductions from blue chip technology leaders, such as Microsoft and Google, there has been no significant, unifying technology to ignite pent up demand for their medical records by consumers. This lack luster interest and ongoing interoperability issues might be the unifying force to drive many consumers to consider Personal Health Information Exchanges (PHIEs) as an alternative to EHRs and Health Information Exchanges (HIEs) that unnecessarily duplicate data and risk HIPAA violations.
Will PHIEs Ignite the Patient Record Access Movement?
Frost & Sullivan, in its research report, “Moving beyond the Limitations of Fragmented Solutions Empowering Patients with Integrated, Mobile On-Demand Access to the Health Information Continuum”, identifies personal health information exchange (PHIEs). They are described as providing individual patients, physicians, and the full spectrum of ancillary providers with immediate, real-time access to medical records regardless of where they are stored by using an open API.
The PHIE can provide access to the entirety of an individual patient record, regardless of the number of sources or EHR systems in which the patient data resides. This technology is made possible through fully interoperable integration servers that can access any EHR system with available APIs and portray the integrated data in a viewable, secure and encrypted format on a mobile device.
By leveraging the powerful simplicity of open APIs, PHIE technology can also access medical records in a way that is much more comprehensive than the closed EMR portals commonly used by doctors’ offices. Despite their pervasive use, these portals are cumbersome and expensive for patient’s use. The portals also include the same lack of interoperability that plagues hospital EHR systems.
Despite significant efforts from the healthcare industry to improve methods to securely communicate protected patient health data, many consumers remain unaware of their rights and options to view and manage their personal health information. Access to health details can benefit patients in multiple ways, from making it easier to remember health history when filling out forms at a new doctor’s office to helping to care for a family member in need of assistance.
“Using our smart devices with a Blue Button-enabled application enables any of us to receive and share our personal health records using the same secure methods used by doctors today,” said Aaron Seib, NATE CEO. “These Blue Button-enabled applications can help patients make sure their information is accurate, make it easier for you to share your information with all of your doctors, and generally have it available whenever and where ever you need it.”
The Workgroup for Electronic Data Interchange (WEDI), a nonprofit authority on the use of health IT to create efficiencies in healthcare information exchange, released the findings from its recent survey on industry awareness and adoption regarding the usage of the “Blue Button” implementation guide for exporting patient healthcare records.
WEDI conducted its first survey on Blue Button in 2013, and as a follow up on the progress of industry adoption since that time, WEDI re-evaluated the industry in 2014. WEDI conducted the survey from Oct. 31, 2014 to Dec. 8, 2014, which included 274 respondents across multiple stakeholders, including providers, health plans, vendors and clearinghouses.
The full survey results can be viewed online and summarized through WEDI’s March 13 letter to the Department of Health and Human Services (HHS). Some key observations WEDI notes from the 2014 survey in comparison to the 2013 findings include:
Relying on integrated electronic health record and medical device data to populate personal health records (PHRs) increased. While provider respondents remained relatively consistent in their use of integrated EHRs, a significant increase occurred for government respondents from 60 percent in 2013 to 100 percent in 2014.
Ensuring awareness of Blue Button as an industry-wide tool remains an opportunity.
Offering the PHR to all patients when implementing a PHR continues to be significant. There is a high percentage (80 percent in 2014) of respondents that are offering the PHR to all patients/members as opposed to only making it available to select subsets of their patients/members.
Enabling the patient/member to retain control over who has access to their PHR data through privacy controls continues to be important.
Transmitting data to patients, providers or authorized third parties appears to occur through DIRECT. Health plan and provider respondents both showed an increase in use of DIRECT for transmitting data, while government and technology developer respondents showed a decrease in use of DIRECT.
Providing patients with a better overall experience continues to show traditional communication methods as top priorities.
Guest post by Bettina Experton, MD, MPH, president and CEO, Humetrix.
Mobile technology core to HIT implementation, a silent revolution which took place on September 23 this year when the HIPAA omnibus rule took effect, giving Americans the right to obtain electronic copies of their health records. But how can this new right be exercised at scale to transform healthcare nationwide? How do we help patients better coordinate their care and ensure their safety by getting their health records in their own hands?
The scalable computing device of choice in the hands of many is a smartphone, now owned by more than 50 percent of the population, and for many the only computing device they use daily to access information on the Internet. Clearly, electronic access to health records would be best provided on the very mobile device most of us carry at all times, especially when navigating a complex health care system with multiple and dispersed providers.
Electronic copies of health records on CDs or flash drives are not only tools of the past, but also perpetuate the barriers and complexity most of us have to face when requesting copies of our records. Desktop and portal-only solutions are also not the optimum approach to consumer-directed health information exchange, since these cannot be available at the point of care where patients need to share their medical history in the most convenient and expedient way. Mobile is, therefore, central to health information exchange policies and new care delivery models built on patient-centered care, and should not be an afterthought or secondary implementation to dated patient portal systems.
In its latest edition of Health Tech Report, a CDW publication, the publication brings up a few of what it calls the top health IT trends to come in the next few months including EHR user satisfaction and BYOD and its risks.
The trends — though some are obvious and some are aspirational — are all worthy of taking a closer look at. Some of the trends listed, like raising the bar on meaningful use and HIEs gaining steam, have already had plenty of attention, but are likely to continue playing a huge role in healthcare and health IT.
What’s particularly interesting from the perspective of the magazine’s editors is that there seems to be a real shift from getting healthcare into IT to hot the technology is changing the business of healthcare and opening opportunities and inroads not previously explored.
Guest post by Tyler Hayes is co-founder and CEO of Prime, the personal social network for your health.
Despite numbers the VA and ONC have shared, Blue Button is effectively not being used. Consumers haven’t heard of it. Developers aren’t implementing it. It’s not blossoming into what it can and should be.
This is happening for several reasons. I’d like to share some brief thoughts on our industry’s relationship with Blue Button, why it lacks adoption, and its currently troubled future.
First, there’s its identity crisis.
Blue Button is not the same as Blue Button+. Blue Button+ is Blue Button on steroids. That’s a good thing. But Blue Button+ is really two things, which makes it more confusing. That’s a bad thing. Blue Button+ is really Blue Button+ Push and Blue Button+ Pull. I hear the former may be renamed to Blue Button+ Direct and the latter to Blue Button+ REST API. Thoughts on the names aside, this is again more room for confusion.
This confusion, just from these few terms, is turning developers off from adopting Blue Button. When developers are confused, you can guarantee consumers are confused. We’ve seen both first hand in non-trivial amounts. That’s very bad.
From this point forward, I’m going to refer to all of these as just one whole: Blue Button. To do otherwise is to descend into madness. This is how Blue Button should exist right now anyway.
Even if Blue Button were to fix its identity crisis, it would still suffer from fragmentation of resources like documentation and community efforts.
Farzad Mostashari, national health IT coordinator, says more progress has been made in health IT in the last 20 months than during the last 20 years. It’s a statement he made during the first day of National Health IT Week in September.
Increased adoption of electronic health records and the push toward meaningful use have been the catalysts for this movement, most of which has been driven by the financial incentives associated with meaningful use.
The ultimate goal of meaningful use, and the subsequent adoption of the healthcare technology, is data collection. A subset is patient engagement.
To a lot of different people, patient engagement means a lot of different things. For some, it’s about patients having access to their information, and for others it has nothing to do with “giving” patients information, but more about making them the center of care, Mostashari said recently.
Health and its information are owned by its community, he said, and the community must have access to its information. Policies and practices need to be set in place to unleash and unlock the activities of the community.
One effort to encourage this is “Blue Button.”
“Blue Button is national symbol for the concept of ‘give me my data,’” he said during his address at National Health IT Week in September 2012.
But the effort is transcending patients. It’s being brought to the vendor community, and their commitment is being requested. Mostashari has challenged vendors to make it easy for consumers, by as early 2013, to view, download and transmit to another party their health information through Blue Button. Engaging the vendor community is exactly the kind of effort the market needs since they have a seat at the table.
So far, several vendors have committed to meeting the deadline for the challenge, which is by the HIMSS Annual Conference in early March 2013. The current list of vendors to accept the challenge (those deserving some recognition) include:
Greenway Medical Technologies
Engaging the vendor community in this effort, for an early push toward view, download and transmit, is the right thing to do and it’s encouraging to to see Mostashari putting ONC’s muscle behind this effort.
Vendors are the folks playing a huge part in the overall effort for a transformed healthcare system and they plan to gain the most because of it. As such, it’s good to see them encouraged to take greater ownership of this process and play a larger role in encouraging the patient engagement process.
Perhaps creating an opportunity is nothing more than observing the details and taking action once one has been identified.
Lack of opportunity, on the other hand, might be the opposite – keeping your head down and barreling through life without taking an adequate measure of the terrain in which you are navigating.
The feds missed an opportunity. During their planning and roll out of meaningful use, in their effort to collect the health data of this country’s population, specialists, in many cases, were not considered as recipients of their meaningful use incentives.
For many specialties, this might not apply. But pediatrics are different entirely. Not so much for the physicians’ sake, but for the patients they serve.
Given the direct marketing plan that the federal government has undertaken with its latest healthcare pet project, Blue Button, I’m surprised by its lack of foresight related to patient involvement to this group when it comes to meaningful use.
As the feds work desperately to change the perception of electronic data collection, and to move the most information into electronic records as possible, one might think the best way to ensure absolute adoption is by requiring the one group of physicians who might be able to affect the longest term change to participate in the incentive program.
Pediatricians, like it or not, have not been given special treatment as far as meaningful use is concerned. They, like another large group of physicians, OBGYNs, are left to fend for themselves. You can read more about OBs and their fierce independence in my recent interview with digiChart’s CEO Phil Suiter. The reason is well known and obvious: these groups of caregivers don’t necessarily rely on the government (Medicare/Medicaid) to keep their doors open.
The nature of pediatric practice is such that Medicare is not a significant part of their practice so meaningful use incentives don’t apply here. Therefore, the only avenue left for pediatrics is the Medicaid option – and it only works for practices that have more than 20 percent of their volume as Medicaid. In most cases, these groups of physicians don’t meet the minimum requirements of serving Medicare and Medicaid recipients to qualify, and, also in most cases, they don’t go out of their way to do so.
Therefore, given the logic that A+B=C, they are not lining up to get their share of the incentive checks.
But, one would think the feds would try to find some way to make an exception for pediatricians to participate in meaningful use without having to meet the minimum requirement that 20 percent of their population participate in Medicare. I’m not trying to re-open an issue that I know has been discussed countless times; I’m trying to make a different point.
That is, given the new push for patient engagement and the social media-like approach being taken through the Blue Button movement, I believe the importance of pediatricians has been overlooked.
Why? Well, it’s obvious to me that to engage a population, it’s best to change the population’s behavior. To do so, you have to catch them young; so young that they never knew a difference otherwise.
For example, children today will never know what life was prior to the web. They won’t be able to imagine life before mobile devices turned us into an always on society. There’s a lot they’ll never know.
Thus, if they are exposed to electronic health records in their doctor’s office as they grow up, by the time they reach adulthood, they’ll expect their doctors to use nothing but electronic health records. In fact, they won’t even know what to do with a paper record – how to read and understand it – and, therefore, won’t give their money to doctors without the systems.
It’s really the most direct route to changing a population’s behavior.
Sure, engaging the adult population through a service like Blue Button is important, and will certainly help fill the gap currently experience in healthcare’s ownership issue, but as we’ve seen in every other area of life, true change won’t come until those who know no other way become the majority and know no other way.
As the self-proclaimed ONC Blue Button movement gains steam and more members of the public sign up to make sure their data gets downloaded, it seems the Office of the National Coordinator, among others in the fold, have borrowed a marketing campaign from office supply chain, Staples.
The “Easy Button” is vernacular for something that get done at the press of a button, even if said task isn’t necessarily as easy as just pushing as button. Obviously, that’s the point.
Same goes for the Blue Button. From a marketing perspective, the concept is genius. With the simple push of a button, you too (read: “consumer/patient”) can have instant access to every last bit of your media records and personal health information like never before.
With the campaign just getting started, there are already more than one million people who have signed up for the Blue Button service (sounds sort of like “black tie event” when I read it like this). Eventually, the movement will take hold, no doubt, and the consuming public will be on board like never before. I anticipate Blue Button will grow enormously, similar in nature to the culture that social sites the likes of Facebook and Twitter have become. Not that we’ll sit around sharing our records with those who “like” us or posting comments about each others ailments and conditions, I think people will perceive blue button to have the same value.
It’s about access to information – information that until now many people have not realized they owned or had access to – instantly, as long as Blue Button is available to them.
That’s the catch after all, isn’t it? Blue Button has to be available to consumers for them to be able to push that little easy button. Seems like there are only a couple things that might keep someone from it. The most obvious is that a patient’s physician must have a meaningful use EHR in place. Another is that the practice must choose to offer the service.
It goes without saying, then, that consumers without insurance most likely won’t have access to Blue Button as they’ll likely not have access to a regular physician with a certified EHR. The current healthcare reform may change this slightly as more people will be “encouraged” to insure themselves. And, as practices move to EHR, access to Blue Button will increase.
All of these details are beside the point. Right now, it’s about the marketing. Making sure patients know that the health information that is rightfully theirs can be in the palm of their hands as easily as pushing a little button.
As we know, or so we’ve hypothesized, that the more you can engage patients in their care, the better care they’ll take of themselves.
And you’ve got to hand it to the ONC. Creating a message that directly engages the public rather than hoping that physicians and their vendors will carry the task is something I have long advocated for.
So getting us, as patient consumers, to engage in and to own our care really took little more effort than developing an app and marketing it directly to the people.