Privacy of Information

There's a fun video posted to the ACLU web site - it is worth watching as it raises some legitimate issues on the privacy of information and the consequences of the sharing and linking of that information. You can watch the video here

What is interesting about this video is how close we are already to this reality. Many private companies can already link existing public sources of data to create an extensive and fairly detailed profile of individuals, their buying habits, preferences etc. You only have to visit your local Jiffy Lube to see how quickly they can pull up all the details on your car and based on this offer the best "treatments" for the "health" of your car! In this case best is probably as much about your car as it is for selling you additional services. In the case of you supermarket shopping card this tracks your purchases in excruciating detail and there have been many instances of this data being used against the individual. In this particular instance it turns out the data used while correct proved to be a red herring and in the words of Bruce Schneier:

The moral of this story is that even the most innocent database can be used against a person in a criminal investigation turning their lives completely upside down.

Clearly today we already see data usage beyond what might be expected, and many would say beyond reasonable limits. But at the same time I think most patients would agree that any visit to a medical office is an extremely frustrating experience. Such visits require patient's to hand write all their data onto a paper form. Data that already exists in many other systems and often in the very system that it is destined to be entered into.

So where is the balance - I believe unfortunately that as Lord Acton said:

Power tends to corrupt, and absolute power corrupts absolutely. Great men are almost always bad men

I also firmly believe that the sharing of information is essential to the delivery of high quality care. So while it is clear to me that ready access to the complete medical record is the most helpful to clinicians there has to be some limitations to accessibility.

So how do we balance the need to share relevant medical information with the concern that the sharing of that information could be used against you. The answer is unclear and the issue complex but several groups are working towards this goal, trying to balance the need for information with the need to protect everyone from the inevitable abuse that comes with total access and power.

Some of the EMR companies have a "Break the Glass" approach to urgent access - providing emergency access to anyone with a corresponding oversight in all cases where they felt the need to break the glass and access all the patient's data. The Voluntary Universal Healthcare Identifier (VUHID) group has taken a slightly different approach by creating a voluntary identifier which allows the individual to control and manage access to their clinical information on an ongoing basis:

.....to enable error-free linkage of clinical information,
enhance the privacy of patient information, improve the quality of
medical care, reduce the rate of medical errors, decrease the incidence of healthcare-related identity theft, and help control healthcare costs.

There are others solutions and ideas and no doubt there will be more added as the systems and ideas develop - whatever we end up with it is clear this is complex area and will require continued debate, careful consideration and ongoing participation by all parties from the vendor community, through government all the way to the individual to ensure we come out with a solution that everyone can live with

EMR Adoption in Small Practices

Why all the resistance and difficulty in getting EMR's adopted and in use across the board. Why is there not a queue along the street as there was for the Apple iPhone v1 and v2?

Is it the usability, the coolness, price point, ROI, design and features, overall complexity or just basic lack of time that prevents the adoption and take up of this technology.

In a recent posting on Mr HISTalk Jonathan Bush started a discussion on why getting small groups to use EMR's. The spirited discussion highlights some interestiung points including one of the reasons not to need an electronic medical record - in the words of one physician:

All I have to do is ask and someone will get me the information

It is hard to imagine a more frustrating experience for a patient let alone a doctor being asked the same question over and over again. Not to mention the implication that the physician has the time, full recall and insight into the patient's condition and possible risk factors to ask all the relevant and necessary questions to reach an accurate diagnosis. With the explosion of clinical data this seems an increasingly unlikely proposition. Far better to have the technology help guide that process, capture and store that information so that it can be reviewed quickly prior to and during the patient interaction. I am reasonably confident that I can review a chart (digital or otherwise) and garner more relevant clinical information in a shorter period of time than going through a question and answer session with a patient. I can pretty much guarantee that this is true if the information is presented in a consistent, structured format.

Cost pressures and the cost of implementing tied to the suitability seems more likey to create a barrier to suucessful adotpion. An attitude of:

We’ll take care of the aggravating stuff

Is more likely to engender success. Perhaps not lines down the street but certainly decrease resistance and increase the desire to use technology to help. There's a reason why we have appliances dotted around our house - most are there to make our lives easier. Some are those poor choice impulse buys that remain on the shelf but all the others do make life easier.

There is another big driver looming - the desire of individuals to have access to all their personal health records:

Consumers want access to their info online, hence PHR

There are those who consider this unimportant and even undesirable and there remains resistance to this concept of personalized
healthcare with
concerns ranging from confidentiality of information to patient’s inability to
understand complex medical diseases and the fear that a patient’s record may
become contaminated by inaccurate medical information if we allow patients to
enter and interact with their own medical record.

I fall clearly on the side of patient empowerment and providing more information and like many other areas I believe consumers want more access and more information. As Regina E. Herzlinger, the author of “Who Killed
Healthcare?” stated in a recent presentation that consumer driven healthcare with improved
access to information will follow the same course as we have seen with cars and
personal computer (PC). Consumers don’t need or even want to know all the
workings of a car or PC but ready access to performance, quality comparisons
and details on cars and PC's allows for intelligent choices and overall improvement of quality
and decrease in price by market pressures brought to bear by the informed
consumer. Healthcare needs to follow the same course and it is the consumer
that will be a key driver of this march towards electronic medical records, easier access and sharing of information and the resulting higher quality care

Getting Technology that Actually Works in Healthcare

There is a article in the fox news site titled: Let's See Gadgets That Actually Work which talks about the frustrations of twenty years of dealing with technology and the fact we are still "fussing" with it.

My own experiences are best represented by one of my favorite people who remains firmly in the camp of "technology needs to be simple to use and does what I need it to do"...

A lot of this has to do with the simple fact that I don't enjoy playing
with machines. I just want them to do what I need them to do with
minimum fuss.

Much of this has to do with a disconnect between designers and users....Motorola had a break out product when they made these two groups the same in designing the original Razr. They gave their engineers carte blanch to build a phone to specifications they would want as users; the result was the Razr which was a smash hit and redefined mobile phones for many.

In a recent thread discussion on the AMDIS listserv one of the participants asked for help in preparing a presentation: "Can IT actually improve medicine without killing the physicians". One of the insightful responses made this exact point:

IT folks tend to work physically isolated from clinicians, but physically proximate to one another, where they reinforce each others' views (and misconceptions).

Exactly! The author suggested that one of the ways to combat this is bring IT folks into your practice, force them to be there during busy working periods and to experience everything you experience from the failures and successes of the technology you deal with. I couldn't agree more...and have made this very point in every company I have ever worked in. Engineers, designers, coders, product managers, and others needs to immerse themselves in the working clinical environment..... maybe instead of bring a child to work day we should have bring an engineer to work day!

At the end of the day - to use Jonathan Weber's words

I just want tools that work. And in that, I don't think I'm alone

I think he's right and this is true in healthcare with some variations in tolerance for the failure and difficulties in using the technology represented by the typical adoption curve




For technology to be successful and rapidly adopted we have to appeal to the larger cohort of users in the tail of the chart. That's the "early and late majority" and that boils down to ease of use and the functionality the tools offer. If the tool makes a clinicians life easier, speeds up a process or reduces the time to carry out a process or procedure then adoption will be faster....

So how about it..... bring an engineer or programmer to work with you next week. However just for the record I disagree with Jonathan on the iPhone. It is cool, it is useful and it is functional but as always YMMV

What to Believe in Todays Information Tsunami

It is a confusing world we live in and making choices is becoming increasingly difficult
Today is a great example of the conflicting nature of information available for our own personal healthcare

Half of overweight adults may be heart-healthy, which includes statements such as

The first national estimate of its kind bolsters the argument that you can be hefty but still healthy, or at least healthier than has been believed.

and Obese people not always unhealthy

... 1/4 of people who were a healthy weight actually had health problems such as high blood pressure, low levels of good cholesterol and high levels of bad fats in the blood.

....over half of overweight adults and almost a third of obese adults did not have these problems.

Versus the long standing advice you can see here, and here, and here
and published articles such as this one published yesterday: Measures of Obesity and Cardiovascular Risk Among Men and Women from the American College of Cardiology that concludes:

This study adds to extensive prior findings, which associate adiposity, in particular abdominal adiposity, with increased risk for CVD

On the same day as news feeds such as CBS and the Times included Why elderly joggers just keep on running.The conclusions included:

California Couch potatoes might not like to hear it, but running regularly has long-term health benefits that last well into old age, according to a study.

Elderly joggers remained fit and active for longer than non-runners and were half as likely to die early, scientists at the University of California at Stanford found. They were also less likely to succumb to age-related illnesses, including heart disease, cancer and neurological disorders.

It's a complex world and making sense of all of this "information" is a significant challenge for everyone, users, patients and professionals alike. The key to helping sort through this data is providing ready access to latest validated research and pushing this data into the consciousness of the users and clinical professionals. Pushing means we need to comprehend the clinical findings, signs, symptoms and tie them back to our clinical databases. This will link the knowledge and information in these clinical databases and push out supporting information to the decision makers which includes the clinical professionals as well as patients themselves. Capturing clinical information as data is one of the first steps in this process - entering it as items on digital forms is one way but that process can be laborious and time consuming so providing alternatives that match current processes is helpful. Dictation of clinical documentation is a prime example that needs to update the way it captures this data and how we achieve this should reflect this growing need for data not text.

As we think about the future of documentation, the data content locked in our traditional documents must be set free to help our healthcare providers and patients start to make sense of the conflicting information feeding in to our clinical decision making

Oh..... and for what it's worth; exercise good and obesity bad.

The Medical Transcriptionist - Knowledge Based Workers Setting Clinical Data Free

Sitting in the Medical Transcription Industry Association Board meeting recently the group spent some time discussing the future of the industry and the changes we need to demonstrate the key value that our members and their organizations bring to the healthcare setting.

The Medical Transcription Industry is transforming and will become increasingly important to the successful implementation of electronic medical records to meet the burgeoning need for better more cost effective healthcare.

Clinical information is critical to the systems that are necessary to support our increasingly complex healthcare delivery. Clinical information comes from the patient via the clinician, the vast majority of whom are dictating that information for a medical transcriptionist to transcribe. Years ago this was done with tapes or even wax drums and type writers..... we have moved on from this paper based communication to digital information and sharing of data like every other part of society as detailed in a report The Digital Workplace and the Information Worker:

...the nurse who enters patients' vital signs into a patient-tracking system on a wireless PDA
...the pilot who uses a laptop to download flight manuals and who calculates flight plans based on weight and balance inputs

and in our personal lives as well.... I am sure many can relate to my experiences with my own 81 year old mother who is digitally connected despite distance and time to me and my family. I am grateful to receive regular e-mails and text messages and we both know what is going on in each others lives and schedule. This connection has morphed from traditional (snail) mail and letters, through telephone calls, faxes into full digital connectivity and near instantaneous updates.

Medical Transcription and the medical transcriptionist have moved on too and the transcriptionist, like everyone else, has become a knowledge based worker and increasingly applies technology to assist in producing accurate, timely clinical documents. And it is this production of documents that remains a barrier to the growth. 60% of the current inputs to the EMR are clinical documents that have been dictated and transcribed. It is hard given the length of time we have depended on documents and in particular paper to leave that paradigm behind but to grow into the value added profession that clinical documentation specialists/medical editor/medical transcriptionist needs to become, it is imperative to move away from two dimensional documents and start to think about clinical data that has been locked away in these documents and needs to be set free.

Those in the profession already know the extensive clinical knowledge stored by those in the industry. This was brought home to me some years ago when I discovered that a favorite past time amongst transcriptionist's was to guess the final diagnosis for the patient as they transcribed a dictation - before reaching that point in the dictation. That's a tremendous amount of clinical knowledge available to be applied and will make this transition to knowledge based worker a breeze!

And the technology is heading that way too - documents are so version 1.0. Structured encoded clinical data in semantically interoperable form is available today in the HL7 Clinical Document Architecture and the CDA4CDT format is available and implementable and brings the value of structured clinical data moving away from v1.0 documents to v2.0 clinical data container (I don't like this term either but I'd be interested in suggestions for another term that doesn't use "document" and captures the idea of data and knowledge)

We are all knowledge based workers. Knowledge and in particular clinical data is one of the key ingredients necessary to help automate clinical care and provide safer more cost effective care. Dictated documents contain clinical data and knowledge that is locked in a proprietary format that is human readable but not machine readable. Clinical documentation specialists/medical editor/medical transcriptionist provide the key to unlocking this data and placing that data into a CDA computer readable format.

Medical Transcription Knowledge Based Workers - Increasing Demand

A working from Home blog "Undress4Success - Work From Home" posted an interesting article on the Medical Transcription industry and the increased demand for Medical Transcriptionists

.... (Overseas) rates are going up too, particularly in India, because they’ve realized that they can demand higher prices thanks to growing need and scarce availability of experienced MTs

The author is right on target - Medical Editors are going to be in high demand. They are and will become key knowledge workers in healthcare. As Tom Harnish says in the blog

...qualified medical transcriptionists (MTs) are in short supply

Good news for those who fear the flatening of the world and the application of technology. Speech recogntion will improve the productivity by automating the rote task of converting the spoken word into text:

The (speech recognition) technology may increase costs by 15% to 20%, but it can increase output 100% to 200% according to one MTSO owner

But to add even more value to this process knowledge based workers will need to do more than just listen to the audio and convert this into text (either by pure typing or editing/proofing a draft output from a speech recognition engine). Adding clinical data that is machine readable and semantically interoperable between all the clinical systems being implemented in our healthcare system will become a must. That process is mostly manual and much information is lost in the avalanche of text based documents that contain the information but only in human readable form. Knowledge based workers will need to provide data elements and structure to these documents turning them into data that can be fed into clinical systems.

CDA4CDT provides an ideal common environment that is designed to flexibly cope with the varied levels of data encoding but still provide the healthcare system with the text based document that can be printed and used as it is currently. But the additional information incorporated into this file allows for semantic interoperability and data exchange at a level that EMRs want and need turning the huge volume of clinical text documents into clinical data inputs to the medical record that can be shared and exchanged between systems

Medical Editors can provide this manually by tagging documents and encoding using the CDA4CDT standard or by using speech understanding technology. Speech understadning outputs a document that is tagged and structured with clinical data. This merges the role of medical editor with a true knoweldge based fuctnion of reviewing and correcting clincal data embedded in the file and clinical document.

Medical Editors are knowledge based workers and are in short supply......

Only 14% of Doctors Using an EMR

The July 2008 For the Record newsletter contained an interesting article that reaffirms the lack of penetration of EMRs in healthcare today

Electronic health records seem so intuitive. Most of us assume our medical records are digitized to save time and help doctors track patients’ medical history. Americans would probably be surprised that a mere 14% of doctors in the United States use electronic medical records (EMRs)

In this particular instance the point is brought home in relation to the daughter of the Queens who was diagnosed with a rare condition DiGeorge syndrome that requires multiple visits and complex treatments. It is true that this example is at the higher end of complexity and requires many more medical interactions and participation but we will all experience some level of medical interaction that will certainly not be getting simpler or less detailed. Medicine continues to innovate at an ever increasing pace and customized drugs therapy and treatments and personalized medicine is within sight. So the problems this family faced which included

....when a procedure was delayed for more than fours hours, while doctors and nurses waited for Courtney’s lengthy file to arrive from another hospital floor. Finally, the records arrived when an aide brought the soaring stack of papers and manila folders on a wheelchair

Will be our problems now and in the future as well. We can look to other countries for their experiences and perhaps even be a little envious as the article cites:

• 90% of doctors in Sweden
• 60% in the United Kingdom

Although the United Kingdom's experiences is not without its own set of challenges and problems and there are those in the US that would question the value derived from such implementations, in general, clinicians and the health care community is agreed - we need to implement electronic medical records for everyone and allow this information to be shared. There is and will continue to be discussion and disagreement on what should be shared, who can see the information and even how it is shared but sharing medical knowledge effectively and efficiently is highly desirable.

Even the technology press is getting in on the commentary with an article from ComputerWorld that makes the point that much of the lack of success in rolling out these systems boils down to the old adage

"Follow the Money"

But the biggest obstacle may be a payment model that offers little financial incentive for most health care providers to invest in using electronic records internally, let alone share them with other providers.

And John Halmka, the CIO for Harvard Medical School and Beth Israel Deaconess Medical Center is quoted as saying

"The provider bears the cost, but most of the benefits accrue to other parties," mainly "payers" -- insurance companies -- and patients who reap the benefits of higher-quality care

So while we wait for the government agencies to fix the incentive problem we need to show value in the implementation and improve the working environment for our clinicians. Taking a leaf out of Apple's play book might help given the impressive (recent stock slides aside) of Apple in the Music Player business (one they were not even in until 2001) and the more recent iPhone. They do come with faults, contrary to the pleadings of your average teenager everyone does not need an iPhone and lining up for hours or even days to get the latest model is not typical behavior. But with their attention to detail and focus on ease of use and intuitiveness I have to believe that with that same level of attention to detail and actually designing a solution that physicians want to use we could accelerate adoption. I'd bet that an EMR designed to be accessed using an iPhone would be a lot more attractive and receive wider uptake and participation by clinicians than one designed using older technology.

And the market is large:

....there are 921,904 physicians, 723,118 practices and 5,756 hospitals in the U.S., according to the American Medical Association and the American Hospital Association.

But more importantly based on the US Census population clock there are around 304 Million customers and the numbers increasing....so perhaps the key driver as Grannis suggests will be Personal Health Records

....efforts by Microsoft Corp., Google Inc. and others to build personal health record repositories...... will put pressure on the industry to embrace EMRs

I know Courtney Queen and her parents are grateful for some level of EMR's in the "Vandy Zone" but I am willing to bet that everyone would benefit. 304 million people asking for electronic records and real sharing of their medical information rather than endlessly filling in the same information on paper forms has to carry some weight....