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Archive for the ‘PHR’ Category

Yesterday, I was in Washington DC to attend ONC’s Consumer Health IT Summit. While having high hopes for some breathtaking new developments, ultimately walked away disappointed as this event ultimately devolved into a Blue Button promotional event. Now I have nothing wrong with some promotion, after all my background is heavily steeped in marketing. What I do have a problem with, as an analyst, is major hype around any concept, technology, etc. that is not balanced with some serious, thoughtful critique.

There were times when I thought this event felt more like a channeling of a Health 2.0 event with the clarion call of “Give me my damn data” being chanted. At times like that I had to pinch myself to remember, no, I’m in the grand hall of the Hubert Humphrey Building. Of course the multiple, large portraits of past HHS Secretaries hanging from the walls was also a clear reminder of exactly where I was.

But despite some shortcomings, the event was focused around what may be the government’s (VA & CMS) finest contributions to promoting patient engagement – the Blue Button. The Blue Button was first released in 2010 by the VA to allow veterans to gain access and control of their personal health information (PHI). CMS later released their own version of Blue Button that allowed beneficiaries access to their claims data. The VA thought Blue Button would be a success if they saw 25K Vets use this capability. The VA passed that number long ago and now, two short years later, the doors have literally been blown off that original estimate with some one million patients now using Blue Button to gain access and control of their PHI.

That is a phenomenal rate of adoption especially when one considers what they actually have access to.

A Blue Button download does not give one a well formatted easy to read file of their PHI. No a Blue Button download is nothing more than a simple ASCII text file and when you look at such a file dump, it isn’t pretty. Thankfully, ASCII has been around since we were hunting the great wooly mammoth during the ice ages so just about any piece of software (e.g., legacy EHRs and claims data bases) can easily create an ASCII file and developers can likewise take an ASCII file and repurpose that text into something fairly legible.

One company doing just that is Humetrix who I first met at the HDI Forum in June. They were also present at this event where they gave me a quick demo of their latest version of iBlueButton – a nice piece of mHealth software that takes the ASCII file from a Blue Button download and reformats it into a very easy to read and decipher file that a consumer can share with their care team. There is even an iPad version designed specifically for physicians, which gets to my next point.

Whenever I am in the company of physicians, I often ask them how they are coping with the changes taking place and specifically adoption of HIT. Had one such conversation Sunday while I was doing the charity Jimmy Fund Marathon walk for cancer research. On this walk there are always quite a few oncologists and nurses and seeing as you’re walking for a good many miles, plenty of time to talk.

I asked one oncologist about HIT adoption at Dana Farber and meaningful use to which he quickly replied: “Meaningful use is the bane of our existence right now.” So I asked further: What problem could HIT really solve for him? He had a ready answer: “Rather than a new patient showing up with a mound of paper records that I must laboriously review, I want a digital version of a new patient’s record with labs, pathology, images, meds, etc. all readily laid out so I can make a more rapid assessment to define a treatment plan for that patient.”

Now we could wait until all the HIEs are in place, all DURSAs are signed resulting in frictionless data flows between healthcare institutions. We could wait until every certified EHR for Stage Two is deployed and physicians start using Direct messaging. We could also wait for patients to request under Stage Two that their provider transmit records to another (still not sure how complete those records need to be to meet Stage Two). Or we could enable Blue Button, educate the public and let them take direct control of their PHI and share it with whom they see fit. Plenty of options but if we really want to change healthcare, the last one is the most impactful, the most viable, but unfortunately like the others, it will take some time, though likely less than getting those DURSAs signed.

Getting back to yesterday’s event and my disappointment, following is what I would like to see in the future:

Honest and frank discussion on giving patients access to their records. The American Hospital Association was in vehement opposition to the Stage Two rules on patient access to their records. Let’s put them on stage to explain why, to give that contrarian viewpoint, to provide balance.

Enlist providers to discuss the benefits and challenges of giving patients access to their records. How does patient access to records change the conversation of care? How does it impact the workflow of a practice? What fears may physicians have and how do we address them?

Fewer panels of talking heads and more real world perspectives. The event had a wonderful moment when a Vietnam veteran talk about his healthcare challenges and how Blue Button contributed significantly to his self-management. Let see more of that, e.g. a Medicare patient using Blue Button.

And my biggest disappointment of all had nothing to do with this event – it had to do with Stage Two.

If indeed the feds really believe in the Blue Button the same way they believe in Direct then why the h*ll did they not directly put it into the certification criteria for EHRs. Clearly something went amiss and it is unfortunate.

Thankfully, many vendors have stated they will support Blue Button in a forthcoming release including Allscripts, athenahealth, Cerner, Greenway, and many others. Our last HIE report also found just over 25% of vendors profiled intend to support Blue Button in 2012. There is momentum here already, now we just need to on-board physicians to talk to their patients about the value of having access to and control of their PHI for as we move to more capitated models of care, the engaged patient may indeed be the miracle drug to rescue our healthcare system from financial collapse.

Addendum: Have received feedback regarding Stage Two and patient access to their records so let me clarify. Stage Two does indeed grant a patient the ability to access, view and transmit their records. This is incredibly powerful, especially with the push towards standards and the transmitted file being in a CDA standard format. As Keith Boone so clearly articulates, the content package that is transmitted under Stage Two is a fairly complete, summary document of care received and an individual’s health status. But Stage Two does not support an ability to transmit a full and complete longitudinal record. It is my understanding that the Blue Button, at least the instance at the VA, allows a patient to download their complete record thus why I took the argument down the path I did. 

In time it is my hope that the Blue Button becomes a symbol, as Keith puts it, “a verb,” that all will understand instinctively – click this, get your data and move on. Other services will take that data dump, transpose it the way you want it for the purposes you intend. The technology and standards behind it will simply become irrelevant to the user. It just works. Getting there will be the task of the S&I Framework workgroups. I wish them God’s speed in accomplishing that task for the benefit of all citizens.

Many in both the private and public sectors are working hard on that vision – keep up the good work!

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Recently upon leaving my doctor’s office I was presented with a print-out of my visit summary. Knowing I worked it the HIT space my doctor proudly stated that this was one the ways that they planned to meet one of the menu objectives of Stage One meaningful use (MU). This is great I thought, until I began looking over that visit summary.

A significant portion of the summary listed the basics such as who I was, why I paid them a visit etc., all pretty boiler plate – nothing new. Then I turned the page to see the lab results of the routine blood-work – YIKES! nothing but acronyms, values and acceptable ranges. I think I was able to decipher about 10% of those lab results and I work in this industry! I can only imagine how difficult and mind-numbing these figures may appear to an “ordinary” patient/consumer.

So seeing some out of range values I began asking my doctor:

What does this acronym stand? Why is this out of range? Is this something I need to worry about?

Being the great doctor that he is, he took the time to explain my results (some of those out of range values are the result of meds) but also expressed a certain level of frustration stating: “I’m not a big fan of passing this information on to a patient for I worry that they won’t understand results such as these and then I need to take time out to walk the patient through their results which can be quite time consuming. Is this another contributor to physician burnout I wondered?

Now I am all for patient/consumer empowerment and do believe that providing patient’s access to their personal health information (PHI) as a critical component of such empowerment. But does providing a patient a visit summary really empower them or does it simply make them confused (as I was) and resigned or worse endanger?

Stage 2 meaningful use rules released last week state that an eligible physician or hospital will be required to:

Use Certified EHR Technology to identify patient-specific education resources and provide those resources to the patient.

But what will that “patient-specific education resource” look like? Will it solve the problem I encountered?

I want more than a generic here is what these type of acronyms and values mean that litter the internet. I want personalization. I want a system that will take my lab results, my problem list, match it up with my meds, allergies etc. and provide me with personalized knowledge of what these results mean to me and my future health. I then want to be provided suggestions as to how to improve those values? This is what I see as true patient/consumer empowerment.

Unfortunately, what I have actually experienced as a result of this grand HITECH effort under Stage One falls far short of empowerment, if anything, it is closer to disempowerment.

Getting a bunch of data in a visit summary without putting it into context is not meaningful, it is meaningless.

My hope is that there are some novel, creative solutions now being developed that will leverage the new concept in Stage Two, the Base EHR, and provide a module that automatically digs into a patient’s PHI and presents the patient with an empowering visit summary. This is one of the ultimate intents of the HITECH Act, I now want to see it happen.

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One guarantee in the healthcare sector is that when it comes to personal health information (PHI), there is no lack of issues and pundits to discuss security and privacy of such information/data. If one does not jump up and down bleating on about the sanctity of PHI and the need to protect it at all costs, well then you may be labeled a heretic and burned at the proverbial stake.

Now don’t get us wrong. Here at Chilmark Research we firmly believe that your PHI is arguably the most personal information you have and you do have a right to know exactly how it is used. Whether or not you own it remains to be seen for we have seen, read and heard on more than one occasion – some healthcare providers believe that it is their data, not yours, and may only begrudgingly give you access to some circumscribed portion of your PHI that they have stashed in their vast HIT fortress, or worse, scattered in a number of chart folders.

But where we do differ with many on the sanctity of PHI is that the collective use of our de-identified PHI on a community, regional, state or even national level can give us some amazing insights into what is working and what is not in this convoluted thing we call a healthcare system in the US. Using PHI for such purposes needs to be strongly supported. Unfortunately, we do a terrible job as a country in educating the populace on the collective value of their data to understand health trends, treatments and ultimately ascertain accurate comparative effectiveness. This leaves the door wide open for others to use the old FUD (fear uncertainty and doubt) factor to keep patients from actively sharing their de-identified PHI.

One of the more popular and edgy online dating sites, OK Cupid, has done some great things with the data they collect on their users. They take the vast amounts of data they collect and do some pretty fantastic and fun (fun is good, fun is engaging) analysis to understand their users and what makes them tick. For some reason, the healthcare industry just doesn’t do fun things with the data – always so morbid!

Imagine if we could collect similar data on health, or heck, even better, imagine taking some of OK Cupid’s findings on body image and sex drive, (see chart 7 & 8) and using that to educate the public on why it may be in their best interest to keep their weight in check. Sure doesn’t seem like the threat of diabetes, heart failure, etc. is doing the trick to lower obesity rates, maybe hitting them below the belt will work.

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What is a fair price to charge a consumer to provide them a copy of their records? That is a question I’ve been pondering since a friend of mine showed me the bill from the local Steward IDN which is owned by private equity fund, Cerebus.

My friend is switching doctors due to a change by her employer in health plans. As a result, she requested a copy of her records to bring with here to her new physician. Seems like a pretty simple, straight-forward request. Steward was more than happy to provide those 10 pages of records and following is the cost breakdown they wished to charge her:

Clerical fee: $18.04
Cost/pg: $0.61
Mailing cost: $1.16

Total Cost:  $25.30

Two dollars and fifty cents a page – Outrageous!

When I asked for a full copy of my pet’s records, about 20pgs, the Vet was more than happy to oblige, for free. When I asked for  full copy of my car repair records (5yrs worth) as I was selling the car, my local mechanic was more than happy to oblige, again for free. So why is that when one asks for a copy of their medical records, which frankly they already paid for in their office visit charges, a company like Cerebus/Steward feels they have the right to charge such an exorbitant sum? Creating such hurdles to a patient’s ability to access their own personal health information (PHI) does nothing to improve healthcare delivery. Its time to put an end to such charges once and for all.

Sad thing about this whole story though is that under Massachusetts statute, Steward is allowed to charge up to $25.00. They discounted the bill $0.30 and lowered the bill to $25.00  Needless to say, I advised my friend to ignore the bill.

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Chilmark Research tends to shy away from the thorny, nearly intractable issues of privacy and security of Personal Health Information (PHI) (we’ll leave that to the lawyers and policy wonks to figure out). However one thing is very clear: As we continue to conduct more and more of our daily activities, both business and personal, via some form of digital device all those little messages, those bits and bytes of data we create are being collected by someone, somewhere to create a more accurate profile of us. In my own case, how else would my favorite site for weather (weatherunderground) know I’m an outdoor enthusiast and have a banner ad for backcountry?

Despite our reluctance to tread into this domain, it is one of extreme importance.  The healthcare industry is undergoing a digital transformation at roughly the same time as consumers increasingly use an ever wider set of digital tools from social media (twitter, facebook, etc.) to text messaging services (txt4baby) to various health & wellness apps on smartphones and even biometric sensors (Nike+, fitbit, Withings, etc.). We’re not sure where all this will lead but at the very least, the public needs to gain a better understanding of how their digital bits and bytes are being used and maybe begin to think twice as to how and where and with whom they share their PHI.

Today, we found one such educational tool, an animated video by Michael Rigley which is quite powerful using MMS as an example.

If this is what the telecoms can now do with a simple MMS, just imagine what they might do with some of that rich health-info you may be communicating.

As an aside, Dr. Searls is doing some interesting work at Harvard Law’s Berkman Center on the concept of VRM, (Vendor Relationship Management). Much of the principles he outlines could easily be transposed to the healthcare sector and the management of one’s PHI.

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Let you in on a little secret. February happens to be the month in which I was born. So to celebrate, I’m giving you dear readers a birthday gift. For the month of February you can get a free copy of the full report: iPHR Market Report Analysis & Trends. Be forewarned that this report is dated (yes, it does have a profile of Google Health), having been published in May 2008, but trust you’ll still find some worthy tidbits contained therein.

Happy reading!

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Since its start in 2007, Chilmark Research has kept a fairly low profile as analyst firms go, focusing on a few discrete domains of healthcare IT (HIT). First there was patient and consumer engagement that led to the publication of our first report on Personal Health Records (PHRs). That first research effort led to a significant amount of consulting work and subsequently no reports published for broader market consumption until 2010. That year Chilmark research expanded into the mHealth domain, with the assistance of analyst Cora Sharma, and published the report: mHealth in the Enterprise.

In early 2011, Chilmark published what is arguably its most important, or certainly most popular body of research, a report on the Health Information Exchange (HIE) market. It was this report that clearly cemented Chilmark Research as a well-respected analyst firm providing unbiased, objective, and in-depth research on the domains it covers.

But there was a problem. By and large the vast majority of this work was done by one individual, myself, the founder of Chilmark Research. Over the course of 2011, particularly during the fall when a significant number of consulting assignments came in the door, I quickly came to the realization that I needed help. I was reaching burnout and the model needed to change.

What’s New:
In 2012, Chilmark Research is launching a subscription service called the Chilmark Advisory Service (CAS). This service will provide subscribers one of our annual market research reports (an updated HIE report is forthcoming, others in the works), a number of other content deliverables and direct access to Chilmark Research analysts for specific inquiries. More will be forthcoming regarding this service but encourage you to contact us directly (info @ chilmarkresearch dot com) if you wish to learn more immediately or schedule a meeting at HIMSS to discuss this service further.

Our research agenda for 2012 will look quite similar to our past work for we strongly believe these are the most important topics in healthcare IT today:

Patient & Consumer Engagement
Why it’s important: As the industry migrates to reimbursement models based on outcomes and providers take on more risk, it will become increasingly important to truly engage the patient and their loved ones as part of the care team. Also, in highly competitive markets, providers will be seeking new approaches to not only engage consumers, but build loyalty.

What we’ll be covering: Patient/consumer engagement and outreach strategies of both providers and payers including patient portals (Stage 2 meaningful use requirements are key market driver), telehealth, privacy & security (including consent management) and new models of care & outreach to not only improve consumer/patient satisfaction but improve outcomes.

mHealth
Why it’s important: No doubt about it, the growing ubiquity of smartphones and how they have become such an integral part of our lives (we store family pictures there, we record our expense reports on them, we answer emails, etc.) and an ever growing number of consumers are doing mobile searches to answer health-related questions. Couple this with near saturation of physician adoption of smartphones and the growing use of touchscreen tablets by providers, it is not too hard to imagine a future where mHealth becomes the touch-stone for provider-patient engagement.

What we’ll be covering: Primarily address consumer-centric and clinician-centric mHealth Apps, how the market is developing, what is being adopted and used and why, and lastly, what is the trajectory for this rapidly evolving, ever changing market.  Currently, we are in the midst of producing a report (ready by HIMSS’12) that takes a close look at mHealth Apps for provider-patient engagement.

Health Information Exchange
Why it’s important: The HIEs being put in place today are the fundamental infrastructure, “the pipes,” that will enable one, be it clinician or consumer, to create a true longitudinal, patient record which will lead to safer, more effective care (at least basic logic points to such). These pipes will also allow researchers, public health officials and others to perform advanced analytics on this clinical data that can lead to better, more effective and responsive care. Lastly, as we move to new outcomes-based reimbursement models, HIEs will become an absolute necessity for virtually all medium to large size healthcare organizations.

What we’ll be covering: As mentioned above, last year’s HIE Market Report put Chilmark Research firmly on the map as a firm providing unmatched coverage of this market. We have every intention of keeping that title. First off, we will be releasing an update of the HIE Market Report (target HIMSS’12 release date) with in-depth profiles of some 25 vendors. Second, we are launching a major research project in early February on end users’ experiences and future strategies for their HIE deployments. We have much more planned for this market, but that is a very good start!

How We’ll Do It:
As mentioned previously, I had some help, but not enough and certainly not enough to launch a major expansion of Chilmark Research. To address this issue I went out and found some incredibly bright young people (always believed in the adage, surround yourself with people smarter than you) to join Chilmark Research. They are:

The returning Cora Sharma who’s research use to be the mHealth domain but has now moved to Patient & Consumer Engagement Strategies & Tools.

The former Washingtonian who has returned to his New England roots, Naveen Rao. Naveen’s research focus will be HIE & analytics/BI domains.

And last but certainly not least, my son, John Moore III who in addition to leading an mHealth start-up of his own, will be focusing his research efforts at Chilmark on, you guessed it – mHealth.

Brief bios on these three stellar additions to the Chilmark Research team are over in the “About” section of this website.

I do not hire readily (learned my lessons there long ago) and have been very judicious in choosing only those who show significant promise. I have no doubt in my mind that with some mentoring, these three have the chops to become some of the finest analysts in the industry and the credibility that Chilmark has established in the market will continue to grow.

Speaking on behalf of the Chilmark Research team, we look forward to continuing to provide this vitally important industry that impacts us all with the critical research that is needed to help guide it forward in the successful adoption and use of IT to truly improve healthcare delivery. Each of us are very passionate about this issue, it is a mission for us and through our research we intend to make a positive impact.

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