EHR Initiative - Is it a Monkey on the Back

In an interesting post by Evan Steele in his EMR Straight Talk blog: "Government EHR Teetering on the Backs of Physicians" talked about the recent HIT Policy committee response to the CMS proposed Meaningful Use regulations and the disconnect between the regulatory requirements and the practicalities of introducing these technologies into the complex clinical environment.

All this was nicely summarized in this graphic

As Evan points out

The government continues to ignore the fundamental problem that has discouraged EHR adoption in the past, particularly for high-volume, community-based specialists—and that is the EHR products themselves. The government has created an unstable program, basing it on unproven, difficult-to-use, traditional EHRs, and then has imposed additional layers of complexity on top of these products.

Demanding direct data entry by the provider into a Computerized Physician Order Entry System (CPOE) is a sure fire way to limit adoption. Did we learn nothing from the Cedars-Sinai failed CPOE implementation back in 2003

Cedars-Sinai failed despite having a very strong track record and deep experience in informatics, strong leadership, and substantial resources. There were several reasons for this failure: many decision-support mechanisms were introduced at the outset, especially for drug-drug interactions; with the way the application was set up, alerts could not be overridden; and it was hard to achieve buy-in from the very large number of providers using the system (Ornstein C. Hospital heeds doctors, suspends use of software: Cedars-Sinai physicians entered prescriptions and other orders in it, but called it unsafe. Los Angeles Times, January 22, 2003: B1)

So despite deep experience they failed and had to suspend use of the system. Meanwhile we see the government meaningful use objectives mandate CPOE from the start. The impact on physicians is likely to be negative and the impact on the vendors and their products will likely create more challenges:

First, EHR vendors will have to rush to modify their products to meet HHS certification requirements, resulting in even more cumbersome EHR products. Then, over the next five years, they will have to constantly hustle to keep up with the continuously evolving meaningful use criteria, as well as implementing the Y2K-like conversion from ICD-9 to ICD-10. In the technology world, rushing development efforts to meet unrealistically aggressive timeframes typically results in unusable and clumsy software. Unfortunately for physicians, the government will expect them to use these more complex EHRs to meet onerous meaningful use requirements that become increasingly stringent from 2011 to 2013 and 2015.

Building on existing processes and systems and in particular clinical practice that collects information as a natural part of the clinical interaction with patients would seem to be a much more constructive approach that would garner support all round. The narrative has been the mainstay of clinical practice and to date the most efficient way of capturing that narrative has been dictation. Facilitating and including the narrative dictation and building on it to satisfy the data needs of EHR's and even CPOE systems is the bridge between these two opposing views and the Healthstory Initiative creates an open and widely accepted infrastructure of standardized implementation guides for the common note types. The project members have been submitting commentary on the Meaningful use specifications and continue to push for the inclusion of narrative in the specifications.

EHR's should be in our future but on terms we can accept and will work in the complex and demanding clinical environment - that requires inclusion of narrative in meaningful use and sensible standards that focus on flexibility and adaptability of technology to meet the needs of clinicians.

Data Input Is Difficult

A recent survey by the Texas Medical Association (TMA) (one page summary here -pdf and the survey results here - doc) shows an increase in the number of people reporting use of an EMR(43% in 2009 up from 33% in 2007). There is also a continued trend of physicians expecting to implement an EMR that is being helped by the Health Information Technology for Economic and Clinical Health (HITECH) Act with 59% of respondents looking to qualify for these incentive payments.

But it is the likes and dislikes of existing users that makes for interesting reading. 76% of respondents like electronic charting which I interpret to be the accessing the clinical data in digital form, the ability to process and manipulate and re-purpose in different formats. And features clinicians don't like..........

data input difficult or time consuming

Shock horror - clinicians don't like being data entry clerks (I can't see my patient's because I am at the Screen Entering Data and Doctor Please look at me not Your EMR). None of this is surprising and this remains the most significant barrier to adoption of EMR's in the busy and complex clinical setting. Designing a brilliant user interface to capture clinicians input into discreet fields may suit the needs of the data driven EMR but it falls well short of the clinical needs and in particular the physicians need for information. Physicians are pushing the federal Health and Human Service department to include the narrative as part of the proposed regulations for electronic health records and rightly so. As the eWeek article "Doctors Say Narrative Missing from Proposed EHR Regulations" stated:

No matter how good [EHR records] are, you'll never get the flavored nuance of the patient's [situation] if you don't have an unstructured note," said Dr. Steven Schiff, the medical director and service chief of cardiology at Orange Coast Memorial Medical Center, in Fountain Valley, Calif

The comparison between a template generated note:

The occurrence was one hour prior to arrival. The course of pain is constant. Location of pain: Head leg. Location of bleeding: None. Location of laceration: None. The degree of headache is mild. The other degree of pain is moderate. The degree of bleeding is negative. Mitigating factor is negative. Immobilization no backboard in place and no cervical collar in place. Fall description tripped. Intoxication: No alcohol intoxication. Location accident occurred was home

and the narrative created by a physician:

The patient is a 74-year-old female who presents with a complaint of fall, 74-year-old female presents with complaint of neck pain, headache. She states that she had mechanical fall at home where she tripped and fell downstairs, approximately 9 steps and landed on her back. She complained of shortness of breath right after the event. She noted that she had pain in her left ankle and left knee. She is not sure whether she had loss of consciousness and the patient further complains of the pain in the right wrist

makes this point with 97% of the survey saying they prefer the human generated note. It's unlikely that that any EMR system will pass the Turing Test anytime soon!

Patients too will start to insist on getting the full Health Story as Steven Schiff points out in his article on in the Huffington Post "Have you Thought About Your Health Story?". As patients increasingly become partners int eh care process rather than the traditional bystander information will need to be transferred between the patient and the clinicians and computer template generated notes are not going to work. There's a good reason that the:

written patient medical record had its birth in the 19th century and as such, has remained almost entirely unchanged for well more than 100 years. During this time, literally everything else in medical care has evolved

It was a very effective means of communication and has served the healthcare providers well but the transition from paper to electronic remains a major issue and the importance of the narrative in the progress note is essential:

From the outset, we need to agree on the critical importance of such notes. It is necessary to tell a patients story, and to assess the significance of that history. At this time, it simply is unrealistic to think that all healthcare givers will develop the typing skills needed to function adequately in this environment. At best, it will require a full generation of doctors, nurses, technicians, and therapists to come and go before that is as ubiquitous a skill as handwriting is now. It is clear to me that the answer to many of the physician challenges that surround electronic medical record adoption and full patient utilization of these records lies in the use of voice recognition software

Electronic health records coupled with voice recognition technology allows me to document in the chart while I am seeing the patient. The note is often created with the active participation of patients and family members; and is then finished at the end of the patient encounter and is faxed to the referring doctor. Additionally, a copy is printed out at the checkout desk and handed to the patient as they leave the office. The notes are error-free for the most part, and are immediately available in the chart. There is no reading, correcting, signing, and mailing to be done. Most importantly, the notes can be highly descriptive, capturing not only the raw facts, but the nuanced details that are unique to that patient.

You're unique; your health record should be too

Right on! EMR's need speech has an integral part of capturing clinical data. Turning that into shareable information that can be accessed and consumed by the data centric EMR is the function of the Healthstory Project that sets out an open Clinical Documentation Architecture (CDA) standard for Common Document Types. Tied to speech understanding and you bridge the divide and overcome the 50% of physicians surveyed who say they dislike the EMR because:

"Data input difficult or time consuming"

The pieces are all in place - we just need to put them together intelligently into the existing workflow and healthcare process.

What are you doing to capture or collect patient clinical documentation. Do you use voice or templates. What do you love or hate about your clinical system?

Time with the Doctor

Scientific American publish an article titled "Are Doctors getting slower or are patients getting sicker" that was based on a paper written and published in the Archives of Internal Medicine: Primary Care Visit Duration and Quality: Does Good Care Take Longer? Chen et al. Arch Intern Med.2009; 169: 1866-1872. (unfortunately subscription required). Apparently people are going to the doctor's office more often and for longer visits than 9 years ago. Whether this is because we need more medical attention or because there are more treatments available, the end result is the same as it is for imaging and radiology. Fewer resources spread over more work. In radiology the explosion of images (imagine the effect of single slice CT to 64 and more slices CT exams) has created less time to review per image for the number of radiologists available.

In medicine in general, if we the patient are consuming more time with more visits and for longer consultations - assuming the number of clinicians stays constant this should result in a decline in time per consultation. This represents a challenge in achieving the goals of modern healthcare

Two of the most pressing goals for the U.S. health care system are to deliver higher-quality care and to lower costs

Since most studies suggest that better care is linked to time spent with the clinicians - especially in complex cases. It turns out according to this study that

(they) found no evidence for the commonly held belief that physicians are spending less time with their patients or that quality of care has diminished

Time spent had increased from 18 minutes per consultation to 20.8 minutes. The investigators discount clinicians inefficiency as the reason for the increase:

Although it is possible that physicians are becoming less efficient over time, it is far more likely that visit duration has increased because it takes more resources or time to care for an older and sicker population

And while I think the complexity has increased in care delivery I think it is far more likely a combination of both (complexity of care and inefficiencies in the clinical care system) contributing to increase in time necessary to spend with the patient. Unfortunately much of this inefficiency is the new clinical systems and the complexity of capturing the information that has added significantly to the time required. No doubt we will see more studies that segment the time in more detail. In fact in some results published in this article in the Healthcare Ledger (Medical Transcription Relevance in the EHR Age - warning pdf) a study suggested that documentation time had quadrupled adding more than 110 minutes per day!

There is consensus on the value of clinical systems and digital information in particular the opportunity of providing more useful data at the time of the doctor-patient interaction. But it was clear from recent discussions that there is a divide in the way in which doctors and clinical staff should interact with these systems to capture and record information. There are those who view additional resources appropriate for assisting (Moving Transcription Back into the Hospital). And there are those that see a need for a change in approach and style to adapt to this process and incorporate into the doctor-patient interview. My own personal experiences support both answers. In some instances the interaction with the clinical system forces a change in the way doctors interact with patients and the process, work flow, methods and materials suit a new way of working. But in a recent experience at a clinician specialist's office (in this case a pulmonologist) it was very clear watching the interaction and in particular the flexibility and dynamic nature of the paper based note taking that any imposition of a digital system would not only slow the consultation to a grinding halt but would reduce the information captured dramatically. This is not to suggest that there is not (or will not be) a solution to this problem but the "standard" digital note capture system would be hopeless in this setting and be quickly rejected.

The comments to the article demonstrate some of the strong feelings - those of doctors overwhelmed with administrivia

Patients are NOT sicker and Doctors are slower, but only because of the inordinate amount of documentation required. My office note 40 years ago might have been: Sore throat-----Penicillin. We all knew what a sore throat was and that Penicillin was prescribed. In contrast Today's visit must include all vital signs, past history, a history of the presenting complaint, history of allergy, plus a rather extended physical exam, otherwise we do not get paid by the insurance companies or the Government. I used to see 50 or more patients a day and see them very well. Now, with all the rules I"m lucky to see 30 and am exhausted after doing so.
Dr. Michel Hirsch, FP, FAAFP (1967-present)
Donaldsonville, LA.

and the patients who feel they are getting less at a higher cost

I must live on another planet. Nurses have always performed all of the routine stuff like vital signs etc. I am 54 years old and have type 1 diabetes. I have never had a doctor spend more than 10 minutes with me, ever. It's usually 5 minutes and $70.

Both are right - doctors are required to do more in less time and patients are getting less. I like many others buy the vision of electronic medical records but perhaps not exactly as they exist today. The current large scale implementations and clinical systems struggle to account for the variations in specialties and their needs and while there is some element of best of breed approach many shy from this concept given the historical challenges of integration and intelligent sharing of information between systems from different providers. Things have improved - Healthstory (using HL7 CDA) as an example of an open standard that allows sharing of clinical data. This is a journey not a destination....and if there is a destination Ill bet that will be constantly changing! The challenge in the coming months and years will be guiding the beleaguered, over worked and underpaid clinicians through the maze of systems, their features and functions and helping them adapt their technology to their practice and vice versa.

How important is the digital record and if given the choice of doctors with and without what would you choose. For the practicing physicians that has an electronic medical record - is it a good or bad experience. For doctors still working in the paper world - can you see this changing or are your needs met currently and cannot be sustained in any of the digital models you've seen?

Moving Transcription Back Into the Hospital

What's old is new again......A recent article in USA Today (High-tech 'scribes' help transfer medical records into electronic form) highlighted the latest innovation in healthcare documentation - "High-Tech Scribes" who help "transfer medical records into electronic form. Is it just me or does that sound like something that is already going on in the electronic documentation industry with medical transcription and editing for the last 20+ years?

The challenge of capturing clinical documentation in digital format have remained the same and the continued struggle of adoption is highlighted by the poor adoption rate of electronic medical record systems

Today, only 1.5% of hospitals have a "comprehensive" electronic health record, and 8% have a basic version, according to Jha's March study in The New England Journal of Medicine. Most hospitals are intimidated by the cost, which can range from $20 million to $200 million.

Pretty poor given how long the industry has been working on this and despite the length of time still no clear exchange format or standard to facilitate the sharing of information

because there are no common standards for these records, doctors who do implement electronic charts may not be able to share them with a hospital across the street

But the value of digitizing medicine and implementing these systems has been clearly established and the terrifying level of errors that do occur as detailed in the landmark "To Err is Human - Building a Safer Health System" published in 2001 and many follow on reports and studies including he 2005 Health Affairs study that reported:

The country could eliminate 200,000 drug mistakes and save $1 billion a year if doctors in all hospitals entered their orders on computers

Despite these drivers we are still languishing in single digits of adoption and continue to struggle to roll out healthcare technology that effectively improves quality and safety without crushing efficiency and effectiveness of clinicians. So the University of Virginia Doctors elected to employ "scribes" to document the clinical encounter and these individuals such as:

Leiner, 22, a University of Virginia graduate who plans to apply to medical school

Who follow the doctors around and capture the clinical interaction on laptops. The consensus appears to be this will not catch on although a recent debate on the AMDIS list server offered some differing opinions that included some potential to reduce mistakes given the second set of eyes reviewing the documentation and the capture of the information real time with the patient. There is complexity in this approach made worse with gender conflicts (female patient and male scribe for example) but this approach appears to represent a modification of the current documentation process that uses dictation and transcription and perhaps offers some potential to free up clinicians to interact with patients rather than focusing on the clinical documentation and the electronic health record.

Moving the medical editor out of the bowels of the hospital just formalizes one of the well known methodologies in many transcription departments that attempts to link doctors to the same transcriptionists so they learn to "work together" (albeit remotely). This would make the bond stronger, the connection greater and the opportunity for error reduction using a trained and qualified "scribe" to document with the clinician. The medical editor is qualified, experienced and a highly knowledgeable resource that is currently disconnected from the clinical process.

Technology just becomes a facilitator in this process with speech understanding and speech recognition providing tools that can be used by one or both of the documentation team. The electronic medical record becomes integral to the documentation process. And although the real time aspects of alerts, evidence based medicine and the application of real time clinical knowledge to the interaction is still once removed from the physician the real time team documentation can provide direct access to the clinician through a combined approach to the capture and recording of the patient encounter.

How would you feel about a scribe being part of the clinician patient interaction - as the patient, as the clinicians or as the scribe?

Is Speech Recognition Ready for Prime Time - You Bet

In a posting on the American Medical News site titled: Is Speech Recognition Ready for Prime Time - You Bet Pamela Dolan refers to the history of speech recognition and how the technology was cited as one of the best things to hit healthcare - 10 years ago. In fact in 2005 I wrote an article for Health Management Technology Magazine (now available for purchase through Amazon): "Is Speech Recognition the Holy Grail":

Speech recognition technology has been lauded as the best thing to happen to healthcare technology since the advent of the computer, but is it really the Holy Grail? Speech recognition has the potential to overcome one of the most significant barriers to implementing a fully computerized medical record: direct capture of physician notes. Industry estimates from physicians and chief information officers at hospitals suggest that 50 percent of physicians will utilize speech recognition within five years. Coupled with this is the growing demand for medical transcriptionists, which is projected to grow faster than the average of all occupations through 2010

In pulling up the original article from my archive it made for interesting reading and while there were still problems with the technology in 2005 it had reached a tipping point and the summary at the end was pretty much on the money:

Speech recognition is good technology, but it is neither a panacea nor the Holy Grail. Speech recognition has been two years away for the last 10 years, but we may be approaching the Grail — finally.

Developments over the last several years have incrementally improved speech recognition systems to the point that some have intelligent speech interpretation—extracting the meaning, not just the literal translation of words—and producing high-quality documents with minimal human intervention. Further integration and embedding speech recognition with mainstream EMR solutions will allow for expedited capture of documentation as part of the clinical care process, offering clinicians a choice of methods to document creation. The last significant development in speech recognition technology was the recognition of continuous speech. The next big leap in this technology will be the merger of NLP and CSR to create natural language understanding. This development will take the technology to the next level and will offer a realistic opportunity to make speech recognition the de facto method of data capture for the medical community. The question is, When?

As the article from the American Medical News says:

"It (speech recognition) wasn't ready for prime time," Dr. Garber pointed out. "Now it is. No question"

But I disagree on the impediment to EMR usage that is linked ot the lack of discreet data. This is true with old style speech recognition - the process of converting the spoken word into text

The problem is when you talk into it, the data is not discrete ... it's still like a Word document

but not for speech understanding which is the the merger speech recognition and natural language understanding - available today. Already in use in many sites and delivering data in Healthstory CDA4CDT format.

So to answer the question - Is Speech Recognition Ready for Prime Time: You Bet!

So are you using it, what are your experiences or would you rather be entering data using forms and computer screens?

I Can't See My Patients Because I'm At A Screen Entering Data

As with so many services the world is getting flatter (per Thomas Friedman: The World is Flat - A Brief History of the Twenty-first Century) and medical services and in particular medical care is no exception. Everyone must run faster just to stay in place even the health care profession. We are seeing increasing interest and uptake of "Medical Tourism" (this term seems wrong to me - it reminds me of "Friendly Fire") and a recent posting on the Wharton Site on Health Economics: Bangkok's Bumrungrad Hospital: Expanding the Footprint of Offshore Health Care (Props to HISTalk). As with many of the offshore medical facility there are questions regarding safety and oversight (see this web site regarding Jim Goldberg's 23 year old son who died there and he is convinced there is a cover up and conspiracy).

That aside the interview with Mack Banner CEO of Bumrungrad makes for interesting reading especially when it comes to the implementation of their Electronic Medical Record system (in this case Microsoft's Amalga) and their move towards a totally digital hospital. This is interesting not least of all because Microsoft is exploring this vertical in another country and developing a solution that we will likely see being rolled out in this country once they have worked out all the issues and filled in feature/functionality gaps. But from a documentation standpoint as Kenneth Mays (the Hospital's Director of Marketing) points out:

We talk to our colleagues in the States and they're all facing the same challenge of getting doctors to enter things into computers. It's wonderful in theory. It makes your system more efficient. It makes it faster. It takes out a big source of errors. But it requires doctors to type in these things and it's not easy to get doctors to do that. It could also take something away from the doctor-patient interaction if the doctor has his head buried in a computer rather than looking at the patient and having a dialogue with the patient.... Hospitals, not just our hospital but I think hospitals everywhere, are facing this challenge.

This challenge is significant and one that remains unanswered in the limited roll out of EMR's. In fact a recent Washington Post article: "Electronic medical Records not seen as a cure-all" Alexi Msotrous makes the point that while everyone appears to agree that American Medicine needs to go digital (it is probably broader than that and I would suggest worldwide medicine needs to go Digital) the results are less than stellar and in some cases

suggest that computer systems can increase errors, add hours to doctors' workloads and compromise patient care

Yikes! The Senate Finance Committee has sent a letter to 10 major vendors demanding to know what steps have been taken to safe guard patient data - I expect the responses will be made public which should make for interesting reading. Meanwhile David Bluementhal rightly points out that

the critical question is whether, on balance, care is better than before and he (David Blumenthal) said. "I think the answer is yes"

I agree - we cannot continue the paper based record and we need data to feed these systems to make them useful. But to get this data in creates a data entry challenge that one physician said

I can't see my patients because I'm at a screen entering data

AND

his department found that physicians spent nearly five of every 10 hours on a computer, he said. "I sit down and log on to a computer 60 times every shift. Physician productivity and satisfaction have fallen off a cliff"

And my own daughter (as a patient) from her experience interacting with a physician office said "I wish the doctor would look at me as much as she looked at her computer" (See Doctor Please Look at Me not Your EMR).

The answer lies in using the current methodologies for capturing information - dictation, forms, and other tools that are blended to provide the easiest and most facile way to capture the data for clinicians. Making the data capture part of the clinical interaction without taking it over is essential. Clinicians talk faster than they can type - capturing that information and making this narrative tagged with semantically interoperable data that is usable by the EMR is possible today. Technology, standards and resources exist that allow for this today.

What would you rather be doing - typing at a screen or talking to your patients?

Cause and Effect - Unintended Consequences

It was the story of the story of the Indiana Grandmother of Triplets whose picture ended up on the front page of her local newspaper titled "Drug Sweep" for the crime of buying two boxes Cold medication that got me thinking about the effect each of us has and fail to realize. She was arrested and prosecuted by the local Prosecutor (Nina Alexander) :

The public has the responsibility to know what is legal and what is not, and ignorance of the law is no excuse

whose inability to see past rules and regulations and direct transference of the problem directly to "the customer". As James Shott writes in Observations in his piece "Citizens deserve service from Lawmakers" the prosecutor clearly lost site of who precisely she was serving:

But does the public not also have a reasonable expectation that laws will be rational and bureaucrats will use common sense?

It would appear not in this case nor in this case. Working the other way was the surprise to the prison authorities in the United Kingdom who introduced anti bacterial hand gel pumps but quickly withdrew them when they discovered inmates were drinking the gel: "HM Prisons ban Anti Bacterial Hand Gel" - interesting they also mention the Royal Bournemouth Hospital was having the same problem and said:

it was one of many hospitals removing alcohol-based hand cleaning gel from reception areas in a bid to stop visitors drinking it

Who would have thought it!

But the same is true with money focused on healthcare reform already approved which according to Mark Leavitt from CCHIT and his presentation at AHIMA last week amounts to $36 Billion. As Kelly Mclendon from HIXPerts pointed out in his presentation this proposals are no longer proposals and the regulation went into effect September 23, 2009 (enforcement may be delayed but it's coming) with a series of focus areas:

• Incentives Meaningful Use and Certified EHR's
• Workforce Expansion
• HIPAA - Privacy and Security
• Data Exchange
• Regional Centers (CER)

As quoted in the presentation - the Office of the National Coordinator (ONC) said on Meaningful use:

To some providers, particularly small or already stretched physician practices or small, rural hospitals, the path toward meaningful use may still seem arduous. To others, who would just prefer to stick with the "status quo," it may seem like an unwanted intrusion. We believe that the time has come for coordinated action. The price of inaction – in adverse events, lost patient lives, delayed or improper treatments, unnecessary procedures, excessive costs, and so on – is just too high, and will only get worse

This train has left and if you are left in any doubt as to the likelihood of the digitization of medicine is coming - ready or not. In the current documents for certification published on the CCHIT web site (warning pdf: Comprehensive Certification Handbook) a quick search of the for the following terms revealed the following number of hits:

Transcription - 0
Dictation - 0
Narrative - 1 ("Textual narratives must be present in each required section")

And the same in the Document (warning pdf: Meaningful Use Matrix Tagged for CCHIT Reference):

Transcription - 0
Dictation - 0
Narrative - 0

While this is neither scientific or conclusive it does represents the potential for unintended consequences. I wonder how many physicians can imagine their lives without Dictation, Transcription and Narrative. There are studies questioning the effects of technology on healthcare with the widespread implementation. Unfortunately subscription required for full articles - Journal of Biomedical Informatics: Qualitative studies to Improve Usability of EMR) - interference with worklfow as one of the posible challenges. More data continues to emerge that suggests that even for the oft cited "young" physician who grew up in an era awash with technology, computers keyboards still fail to transition easily to documentation using a keyboard and mouse once they enter a busy clinical practice overwhelmed with patients. As the Healthstory consortium states:

Approximately 1.2 billion clinical documents are produced in the United States each year. Dictated and transcribed documents make up around 60% of all clinical notes

With the looming regulations and incentives that currently take very little account of this enormous block of data. In fact in many instances have been promoting how they plan or propose to get rid of it, ostensibly to "save money" offers an opportunity to watch untended consequences grind the system to a halt. Anecdotal stories of physicians who are forced to spend more time on documentation for the purposes of clinical systems and in the case of the NPR story today: How the Modern Patient Drives up Health Costs that featured a tearful Dr Teresa Moore whose Keysville practice is overwhelmed with paperwork that finds her

stay(ing) at her office late into the night, trying to complete paperwork so that she is able to spend enough time with her patients during the day — enough time to explain why this test is probably not necessary, why that pill wouldn't be a good idea. And her children, she says, pay the price

In this story the focus is the additional burden of the educated patient questioning care, asking for alternatives or bringing in internet print outs and adverts. But the principles and issues remain the same - and as she says when asked if she preferred the old passive patient or the newer more demanding modern patient

But I do like an educated patient who's willing to read about their health issues. So I guess I'd like someone in the middle

Having others deal with the burdens of documentation (or in this case insurance that in her words: "Sometimes you have to request a form just to get the correct form — you do. You have to fill out a form stating the preauthorization form that you need") would help alleviate the strains placed on the clinical providers. But without involvement and participation of the providers of clinical documentation services we may be caught up in unintended consequences both from the perspective of the patient but also from an industry.

Be part of the solution and get involved - join Healthstory, get involved in Advocacy and provide input to the Rule Making and definition of Meaningful use.

The Challenge of Integrating the EHR into Clinical Practice

It probably comes as no surprise to read a recent report published on the "Society of Teachers of Family Medicine". In a their January 2009 "Family Medicine Journal - Vol 41, No 1": First Year Medical Students Can Demonstrate EHR Specific Communication Skills: A Control Group Study (abstract here - and full text here - pdf) they reviewed the teaching of medical students in relation to EHR specific interactions. Not surprisingly students that received communications and skills training for EHR usage performed better that the control group when judged on 10 EHR communication skills

That skills measured in this instance were divided up into 3 major categories - geography, Doctor/patient/EHR relationship and using the computer to teach and enhance care as follows:

• Adjust the geography

1. Student did not have their back to me during the exam.
2. Student adjusted the chair to be at eye level with me.
3. Student adjusted the screen so I could see it easily.
4. Student moved close enough for me to read the screen to construct a triangle between student/patient/computer (Signals like “Can you read the screen OK?”)

• Triad: doctor-patient-EHR relationship

1. Student introduced him/herself before turning to computer.
2. Student introduced the computer into the triad.
3. Student visually shared EHR information on the screen during the exam to bring me into the triad, rather than keeping me outside of his/her computer work.
4. Student maintained good eye contact with me during the encounter.
5. Student alerted me verbally when turning attention from me to the computer.

• Using the computer to teach/enhance the quality of care

1. Student showed me my vital signs.
2. Student graphed my vital signs or showed flowsheets or showed trends about my health.
3. Student asked if I’d like a copy of my data.
4. Student accessed other online patient education materials for me.

There are no real surprises to discover training an education can help improve the use of the EHR in the clinical setting but it was the feedback from the medical students that was interesting:

Medical students have expressed concerns about their ability to integrate the EHR into patient encounters. In a 2007 study, Rouf and colleagues reported that of 33 third-year medical students conducting electronic ambulatory encounters, only 64% were satisfied or very satisfied with doctor-patient communication when using an EHR.6 Further, only 24% thought the EHR improved their ability to establish rapport with patients, and only 21% believed that their patients liked them using the EHR. In addition, 48% of students reported they spent less time looking at the patient because of the EHR, and 34% reported spending less time talking to the patient.

So while a large number were satisfied with the doctor-patient communication when using the EHR they recognized that only 21% of patients liked them using the EHR. (the patient feedback directly would have been more useful). The 21% is not statistically significant since it is hearsay of the medical students not the patient but if my own personal family experience is anything to go by (Doctor please look at me not your EMR) then this may well underestimating patient dissatisfaction.

In fact I suspect patients are much like doctors in that they like the output and the improvement in communication and availability of information that comes with the EHR but like doctors hate the process of capturing this information and how this detracts from the patient-clinician interaction.. Solving this conundrum would push the adoption of these tools well past tipping point and into common use in every clinical setting. The dream of automating this task was captured in a still famous video from Hewlett Packard in the early 1990's "Imagine". Those that saw this were caught by the ease of interaction and the simplicity of sharing data. As the patient was wheeled into the Emergency Room the Emergency Medical Technician and nurse are documenting the vitals, history and related clinical findings directly into the EMR into the relevant fields - not with a keyboard and mouse but with their voice. Key data was identified and linked to the EHR database allowing the clinician to access the information and pull up related studies.

While we may not be quite there yet voice enabling the interaction still represents the most efficient method for capturing information. Capturing text has been possible for some time easily but the transition to structured clinical data is occurring now. The narrative is captured in its entirety (more on this next week) and within this narrative key data elements are identified and tagged and held in Healthstory format ready to be passed into structured data fields of the EHR.

Are you getting the full story?

Information Overload in Healthcare

Physicians are drinking from fire hoses that are fed by the expanding number of systems and information sources. Dealing with this information explosion was the subject of a recent posting by KevinMD on his blog titled "How a wealth of information takes attention away from the patient" (it was a reposting from Abraham Verghese blog originally called "A Theory of Attentivity"). Despite a prime time for working inpatient coverage as residents and senior residents reach the end of their training year and are better and more experienced it has as he describes it, gotten more challenging for the mountain of data that:

...exists on each patient. It’s a surprise every time, a feeling analogous to revisiting Bombay or Madras after years of being away and finding that a city you did not think could get more congested, has done just that

We add voluminous quantities of notes and data to a patient that represents the ever increasing haystack of patient data. IN fact as he quotes from a 1969 lecture:

What information consumes is rather obvious: it consumes the attention of its recipients

Or as he paraphrases TS Eliot with an excellent quote:

knowledge can get lost in information, just as wisdom can get lost in knowledge

Leading to a lack of attention to the patient. It's not just data as I highlighted in this post "Doctor Please Look at me not Your EMR" that stemmed from my daughter's visit to our local pediatricians office. While I understand the desire to push a "poverty of attention and agree that the computer should not rule the interaction as this hinders and in some cases destroys the clinical diagnostic process we do need to address this information problem.

The clinician interaction needs to be captured. Providing a point and click technology to capture that detailed process that he suggests to his student that demands:

getting as much as he can from listening to the patient, from sounding the body

Will never be captured in a drop down list or check box. This is the information in the narrative. But if we just load narrative it will provide little value as it just adds to the hay stack and clinicians will be relegated to turning pages of information in the eBook reader (better known as an EMR). For this information and knowledge to be useful it must be computer interpretable and usable by machines automatically. This is the strength that Healthstory format and structure brings. Allowing for the capture of the narrative but attaching codes and structure to that content that makes it useful.

The case is made - we need to keep the clinician patient interaction and preserve that content but it needs to be made useful. Filling in forms and selecting from drop down lists is not going to satisfy that need and worse may well limit the capture of rich detailed knowledge that is an essential part of that patient discovery process. Helping to bridge that gap is the Healthstory project that allows for both worlds to coexist happily.

Have you joined?

Standards and Interoperability

It has been an interesting week of rhetoric and emotional outbursts for and against healthcare reform. In amongst the many articles I found this post from David Kibbe on the Healthcare Blog: Why Standards Matter - the True Meaning of Interoperability; a word that he believes that the American people are skeptical of.

You only have to take a quick visit to one of the personal health record systems Google Health or Microsoft HealthVault) to understand why when he says:

interoperability is a hugely important word in the context of today's ongoing debate about the use of EHR technology by physicians, hospitals, and patients too

It is not just an important work, it is an essential component of any future innovation in healthcare. At a recent meeting of the HIT committee several of the members acknowledged that

didn't really know" what interoperability means

Yikes! Frightening if the advisers don;'t have a good handle on what this should mean. He is right that there is complexity in a precise meaning of interoperability since there are many levels and the post contains some good descriptions on the various levels and elements of interoperability - for instance data, words, formats, layout etc. But as he rightly points out capturing medical information in PDF format does not make it truly interoperable and in the example h cites of loading his living will into Google Health this is simply an online version of the Amazon Kindle. Interesting and may be useful to have but not really interoperable.For it to be interoperable the information contained in the files should be in a standard format and the example here is XML (the underlying basis of web pages that you are reading this blog on). XML is an open standard and has a lot of flexibility (as we have seen with the advent of even more creative web pages and Web 2.0 type applications)

The essence here is the need for standards that are the industry and users of the information need to agree on the standard. We need to move past the VHS/BetaMax or BluRay/HDDVD debate and to a set of standards that everyone can use.

At this point standards have not been agreed and there are still some competing standards but XML does seem to be an underlying technology format of choice and is in use Healthstory. Based on Clinical Document Architecture (CDA) that uses XML this format allows for the capture of free form narrative linked to encoded content such that the Diabetes in the note can be identified by a computer systems as ICD9 Code of 255.0 - Diabetes Mellitus). Already some systems will import medical information encoded using XML type standards and this is likely to increase. As you think about your health record you should be looking for providers and technology that will export your information in a meaningful format that can be reused in other systems and applications. Start looking for your records in interoperable format - and insist on the full story not just extracts or sub sets of the data.

More is Not Better

It is customary to believe that more is better. Higher availability and more access = better care...right? Wrong! A recent interaction at the pediatricians office amplified the point and the influence that the patient can have. In a case of extended week long general malaise some level of investigation and therapy was warranted and we agreed on some basic blood work. But in the conversation with the pediatrician she explained that many of her patients were insisting on "Lyme Titre's" based on local reporting of "huge increases in Lyme disease". Nationally the incidence runs around 0.04% and is considered "rare". I could have insisted but logically it made no sense - there had been no possible instance of exposure to risk factors (tick bites) so what would that test bring. But my choice was clearly not the norm.

It is this excess utilization driven by the system that is detailed in in Atul Gawande article penned a another insightful piece in the New Yorker that shreds the notion that we are getting better care just based on higher access. "The Cost Conundrum" is the talk of the town and rightly so.

In his tale of two cites - 800 miles apart in Texas the data available on healthcare costs and results shows that McAllen, Texas is spending approximately twice the cost (~ $15,000 per enrollee). Currently Medicare income per capita is $12,000....! In El Paso - some 800 miles away the costs are half as much running at around $7,504 per enrollee. Similar mix of demographics and public health statistics.

His discussions with local residents and providers was revealing in the wide variation of possible causes:

• McAllen is providing unusually good care (it's not)
• Better technology availability (it's not)
• More doctors (no difference)
• The service is better
• Malpractice is a bigger problem (not based on the recent Texas law capping malpractice claims)

In Fact on the quality metrics published by Medicare:

Nor does the care given in McAllen stand out for its quality. Medicare ranks hospitals on twenty-five metrics of care. On all but two of these, McAllen’s five largest hospitals performed worse, on average, than El Paso’s.

Not only is the cost troubling but the outcomes show that the population is not getting value for their expenditure. As is so often the case if you follow the money" the answer becomes evident. Our system incentivise use not results. As the cardiologists put it when asked about a hypothetical patient with chest pain that goes away and has no associated family history or other clinical indicators to suggest heart disease...

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

And for many patients this would be a great outcome. They got the test they needed and ruled out heart disease. Not so for the sub group who are unfortunate to suffer complications some minor and transient and some major and permanent (you can get a good overview of the procedure and complications here):

The1-2% of people who get major complications from the procedure, the 0.08% who die from the procedure, the 0.03% who have a myocardial infarction precipitated by the procedure, the 0.06% who have a devastating stroke or the 0.62% or 0.06% depending on the approach Hospital Acquired Infection, the 1% who have an allergic reaction to one of the many agents used, the 1% who may go on to develop renal dysfunction....still feeling good about the investigation?

In McAllen the analysis of the Medicare data revealed some troubling variation compared to El Paso:

Between 2001 and 2005, critically ill Medicare patients received almost fifty per cent more specialist visits in McAllen than in El Paso, and were two-thirds more likely to see ten or more specialists in a six-month period. In 2005 and 2006, patients in McAllen received twenty per cent more abdominal ultrasounds, thirty per cent more bone-density studies, sixty per cent more stress tests with echocardiography, two hundred per cent more nerve-conduction studies to diagnose carpal-tunnel syndrome, and five hundred and fifty per cent more urine-flow studies to diagnose prostate troubles. They received one-fifth to two-thirds more gallbladder operations, knee replacements, breast biopsies, and bladder scopes. They also received two to three times as many pacemakers, implantable defibrillators, cardiac-bypass operations, carotid endarterectomies, and coronary-artery stents. And Medicare paid for five times as many home-nurse visits.

As Atul Gawande put it:

The primary cause of McAllen’s extreme costs was, very simply, the across-the-board overuse of medicine.

The good news is that just having the technology does not necessarily translate into over use. The Mayo clinic in Rochester has some of the highest levels of technological availability but one of the lower rates of Medicare spending (in the lowest 15% of the country at $6,688).

At the core of this story is data - the lack of insight and availability of data was troubling:

It was a depressing conversation—not because I thought the executives were being evasive but because they weren’t being evasive. The data on McAllen’s costs were clearly new to them. They were defending McAllen reflexively. But they really didn’t know the big picture of what was happening.

The most expensive piece of equipment in the hospital is a doctor's pen. But this tool has been heavily influenced by knowledge and availability of best practices. Where best practices are well defined there is close alignment in the clinical choices. Where the science is unclear the variations arise from high levels of investigation (in areas of low cost healthcare delivery) to low levels and conservative treatment (in areas of low cost healthcare delivery). Overall the intent is not to over charge or provide more care but the underlying drivers change behavior for clinicians who try to cope with a complex and overwhelming system that they have little training to deal with.

To borrow form the Six Sigma and Deming's "Plan-Do-Check-Act" Cycle Six Sigma attacks problems with DMAIC

• Define high-level project goals and the current process.
• Measure key aspects of the current process and collect relevant data.
• Analyze the data to verify cause-and-effect relationships. Determine what the relationships are, and attempt to ensure that all factors have been considered.
• Improve or optimize the process based upon data analysis using techniques like Design of experiments.
• Control to ensure that any deviations from target are corrected before they result in defects. Set up pilot runs to establish process capability, move on to production, set up control mechanisms and continuously monitor the process.

Rinse lather and repeat. Critical to this process is developing measures and collecting the data to measure. But healthcare has lived in a wilderness of data both clinical and financial. Everything about the current system is focused on increasing volume in part to offset the decreasing levels of reimbursement. Creating systems like the Mayo that deliver care where "the needs of the patient come first" is at the core of the changes necessary. What is interesting is that most here would love access to the Mayo care but in the political battlefield the concepts and ideas are tainted as rationing and limits to our supposedly great service.

Everyone likes to bash the NHS in the United Kingdom and roll out the legion of complainers who list the reasons why the system is not working while failing to acknowledge the integrated care and access helps deliver better care. While the NHS may not be the perfect system it does encompass elements that we should learn from. I know which care I'd prefer to receive - that of the Mayo style; balanced and high quality. I avoid the McAllen experience where possible recognizing that the "MD" at the end of my name can influence the clinical interaction positively or negatively. I can invariable force the investigation or test if I choose to but I elect to be far more conservative in my approach for me and my family. As I did with the Lyme Titre and do repeatedly - I remain conservative bucking the trend.

Do you? Would you have insisted on the Lyme Titre or just accepted it when it was mentioned simply because you had heard about Lyme disease, were worried and your physician had mentioned it? More is not always better. What's your experience?

Risk Assessment in Healthcare

Bruce Schneier posted an article in his newsletter "Why People Don't Understand Risks" that referred to a piece in the Minneapolis Star on Infant Death and their front page headline "Co-sleeping kills about 20 infants each year" (btw this case is more complex than this headline suggests as there are drugs and alcohol involved - babies have slept with their parents and in their parents beds for hundreds of years and without drugs and alcohol represents the a normal safe way for those that like this idea). As he points out - the article is useless since it provides not context or additional information to draw any kind of

The only problem is that there's no additional information with which to make sense of the statistic.

As was made clear with this cartoon:


the science of extrapolation is not quite that simple

The context is of course the usual for the media - shock value and attention grabbing headlines - in this case the tragic case of an infant death from smothering in their sleep. But nowhere so we see details of

• How many infants don't die each year?
• How many infants die each year in separate beds?
• Is the death rate for co-sleepers greater or less than the death rate for separate-bed sleepers?

And the media is only trotting after the marketing machines in some companies - the latest instance of marketing taking over was featured in this piece on USA Today on Tanning Facilities and needless to say disputed by the "The Sunbed Association" disputes this and says:

"there is no proven link between the responsible use of sunbeds and skin cancer"

Well not according to the latest research published that sunbeds cause melanoma. Well proven links that the more sun or UV you expose your sun to the higher the risk of skin cancer.

And there lies the challenge in assessing risk. Filtering information requires some deep insight and sifting through the veritable tsunamis of available sources which represents a significant challenge for the every day user. The issue of Sudden Infant Death (SIDS) is very emotive and reminds me of the major change promoted some years back that had a big impact on incidence - place the baby on their back not on their front. "Back to Sleep" was the campaign back in 1994

So as you approach the headlines and marketing of technological advances take it with a pinch of salt, ask for all the data. Use the web and resources to research your decision in the same way you would do when you make a major purchase. As we discovered recently in our household - not all ear piercing is created equal.... the Ear Piercing Gun and the mall option at Clare's maybe no a good choice. Item no 3 in this search revealed the problems associated with the Ear Piercing Gun.

What are your experiences. How do you filter information - share your tips and tricks

Three Body Problem - Transcription Productivity and Speech Understanding

As an official Space Aficionado who "Applied to Ride" in an attempt to get a spot on a Russian rocket into space in the 80's and was beaten to that spot by the scientist from "Mars" - the confectionery maker I can't resist finding a link between current Apollo 11 memories and healthcare and clinical documentation........

The moon shot was a triumph in so many areas - the science alone was complex, challenging and with the level of computer sophistication at the time even more incredible for its success. Bear in mind that the Lunar Lander had a computer that had the same power as a wristwatch today (actually it was probably less). It is clear from this insightful Op-ed piece in the NY Times - "One Giant Leap to Nowhere" that much of the drive and success of the moon shot was less about the technology and more about the vision of one individual. Wernher von Braun was the philosopher who created the vision and orchestrated the various components into place to successfully place a man on the moon and return him safely to earth. The original drive was more military than scientific despite the fact that any possible attack from space remains challenging by virtue of the "three body problem".

Clinical documentation needs to solve an equally complex three body problem of Medical Editors, productivity and Speech Understanding. There are clear benefits to be had from implementing technology but these benefits accrue not just from the technology but from addressing all the elements. Imposing requirements on physicians on the way they dictate (pronunciation, terms, punctuation etc), on what they use to dictate (audio quality is a big contributor to ability of a speech understanding technology) and even simple workflow improvements that remove the necessity to dictate patient information or repeat information that is already captured and can included automatically are all key elements that can contribute to successfully using technology to improve efficiency. That said I would advocate some variations including less demand on changing physician behavior and having the technology adapt to the physician rather than the other way around - but not all technology is capable of this smarter approach.

In fact Jay Vance in his Blog The XY Files in an MT World talked about these points in a recent posting "Transitioning to Speech Recognition Editing". As he points out there is more than just technology at play. As he rightly points out:

This leaves the impression that 100% of the permanent physicians' dictations are being successfully recognized by the system....I've never seen this level of successful implementation, ever

And the point is well taken there is more at work here than just technology. The medical editor remains a key resource in this equation and part of the three body problem. But just applying technology won't make medical editors more efficient and more productive and importantly better compensated. Addressing the productivity gains and educating not just the clinicians but the editors and management is essential.

I'd add an additional element to this equation one I believe is essential to clinical documentation companies and specialists in this field.... this is not just documentation this is clinical knowledge and information. Generating "reports" or blobs of text be they in RTF, PDF, DOC, or TXT format is not solving the problem or addressing the needs of the sector. Clinical documentation specialists should be using their human intelligence and knowledge to generate "Meaningful Clinical Documents". We require vision and drive towards the creation of clinically actionable data from the documentation industry. We have the necessary infrastructure to help achieve that - I've talked extensively about Healthstory and the importance of preserving the narrative while making the information contained semantically interoperable or computer interpretable for consumption in our increasingly digitized world of medicine. The industry needs to rally around generating useful information not plain old text.

In many respects I think the industry needs the philosopher visionary who can, like Wernher von Braun, articulate the reason why transcription remains an essential component of healthcare delivery and not a dieing industry. His response to the frequently raised question of space exploration and why we Robots were not the solution to space exploration:

there is no computerized explorer in the world with more than a tiny fraction of the power of a chemical analog computer known as the human brain

Has much in common with healthcare, medicine and in particular the process of documenting and capturing clinical information where I would say:

There is no computerized system in the world with more than a tiny fraction of the power of a chemical analog computer known as the human brain, that can replace the knowledge workers in healthcare

Are you that resource and can you be part of that vision or even lead that vision. This is a rallying cry for Clinical Documentation to shoot for Mars and generate Meaningful Clinical Documents that contain the complete Healthstory.

Self Service Medicine

No doubt the title will raise a few eyebrows but there is a growing trend of self service in many other industries as detailed in this posting last month by Tim Egan at the NY Times - The Self Service City and also in this posting by David Strom - Surviving the Self Service Internet. In each of these pieces the authors describe the slow erosion of personal service in favor of automated systems and technologies. In almost all cases this is not for the benefit of the consumer but for the benefit of the service provider. In the case of cameras "it turned out to be a revenue-generator" and the local government "took to it with a vengeance":

Who needs a human being when you can write ten times as many tickets without overtime pay?

But in fact as Tim points out

Numerous studies have found that robo-cams make intersections less safe. People panic knowing the camera is on them, trying to beat the recording click of their license plate. In Alexandria, Va., one study found that accidents increased 43 percent at intersections where cameras were used to enforce red lights.

But you won't find easy links to those studies as the governments have found a new way to tax the citizens thinly disguised in the name of safety. In fact this is subject to a concerted effort in my home state to combat the rising tide of cameras (you can find out more here)

And the story has been repeated with frightening frequency from the original trail blazer of ATM cash machines to check in desks at air lines. How about the local little league baseball match, even professional games umpired by cameras. Perhaps that is good news for healthcare as the industry is certainly currently in the face-to-face contact world. But there are moves to change this - this the latest in self service healthcare in the PBS piece - Bill of Health: Self Service Medicine. The concept is still in its infancy and centered around capturing registration and basic details but we are seeing the idea moving into the healthcare realm. It is hard to assess this and there are of course concerns expressed over the safety of such an enterprise since no "professional" will have reviewed or checked the information and diagnostic process. Equally the application of a good data base could actually apply more information to a consultation given the limited capacity of the human mind to recall all relevant information. In fact in a recent posting on online symptom checkers that took a look at a few of the same tools being offered in a self service world. No question there are challenges but some of the tools I have seen show great promise and even the potential to bring more data analysis to each and every consultation. Today your success and treatment choices are very much driven by the first touch. This is well demonstrated in oncology where your the likelihood of your treatment being surgical is much higher if the first person you see is a surgical oncologists. Similarly for radiation (radiation oncologist) and chemotherapy (medical oncologist) - yet we know that there are some clear benefits to the correct sequencing of treatments for best possible outcomes with minimal side effects

So is self service medicine a good or bad thing......I'm going with good. But for it to be effective patients need to have complete detailed health records that they own and have full and ready access to. Part of that ownership includes the need to provide useful translation of complex terms into more readily understood information that can be read, understood and processed by automated clinical tools. In other words patients need the full healthstory that they can read and feed into these systems.

Imagine the circumstance where you have an incidental finding on a routine x-ray that is ignored because it does not fall in the typical patient profile for the clinicians specialty that you are visiting. But feeding that information into an online personal health record provides additional background and alerts that make you a better more informed patient that can discuss the findings and determine the best next steps in conjunction with a clinician.

There are challenges of privacy, insurance and even excess investigation but like your airline flight.... wouldn't you rather know why the aircraft is sitting on the ground or should the pilot just assume that he knows best and keeping you informed is unnecessary until such time as he is certain on the reason and the possible outcome. I know which one I prefer - full and complete disclosure. Unpleasant news is always hard to take but prevention is a key element to successful treatment and outcomes and without full disclosure getting to that early diagnosis is will be that much harder and take longer.

Do you have personal experiences good or bad. Do you agree - online checkers or self service medicine is good - or perhaps you disagree and you think this should be stopped at all costs. Let me know

Meaningful Use and the Missing Ultrasound

Imagine you show up for a follow up appointment with your physician to review the Ultrasound you had done 10 days ago. An ultrasound that was performed in the same hospital system as the one you are visiting that you fully expect to be available for your physician to review with you - but when you arrive they have no information, report or even knowledge of the study every being performed.....well you don't have to imagine this at all as I would bet it is happening on a routine basis in many facilities.

So it was for a recent visit in our family. Fortunately I had insisted on a digital copy of the Ultrasound delivered on a CD in DICOM format. A quick visit to download a free DICOM Viewer - in this case OsiriX and a potentially wasted visit turned into productive experience. But were it not for the standard of DICOM making these images available easily, and my mission of collecting all medical records personally it would have been a very different story. In my mind the facility woud not have passed the first hurdle of meaningful use - no one involved in care was getting meaningful use of the imaging study or the information from that exam.

Which brings me to the the HITECH act and Meaningful Use standard. Health and Human Services convened hearings on Meaningful use in April this year and issued a set of recommendations that were open to public comment up to June 26, 2009. It is an important question because the incentive funds are linked to implementation that fulfills "Meaningful Use". Naturally everyone is scrambling to determine if their product/solution will meet the requirements and for those on the purchasing or user side wanting to know what Meaningful Use means to them. The Association of Medical Directors of Information Systems (AMDIS) submitted their combined response - the result of discussion that took place at the cleverly nabbed domain www.meaningfuluse.org. The AMDIS response can be found here (pdf). AMDIS promotes Meaningful use based on broad high level themes that include

• Meaningful use should be from the patient’s eyes and in particular make the information available to them
• Clarification of the requirements to receive funding - what must be met to receive payouts
• Focus on data capture and sharing
• Defer reporting requirements of quality measures on the basis that this will become a natural byproduct of implementing systems that capture this information appropriately
• Defer requirements for CPOE implementation as this represents a huge technical and administrative challenge
• Support the criteria with certification of systems that ensure they can talk to other systems - sharing of the data

Great additions to the debate and ones that include a common theme of the patient and importantly easy access to their own records and clinical information.

Not surprisingly the common theme of shareability of information is also evident in the Healthstory response which can be found here (Word Document). Healthstory focused on:

• Incentives to make information sharing a core component of any system and process
• Make the information shared available in "meaningful" form that includes structure and consistency
• Include additional codification of the data that makes it useful to both humans and electronic healthcare systems
• Create incentives for reporting of quality measures

The common thread is the ready sharing of information for the Personal Health Record. As presented in an organization chart that I remember from years back at ground breaking and innovative facility Health Care International Hospital (HCI) in Glasgow Scotland the patient is the king and appears at the top of the organization chart. So while the comment period has closed your ability to look for meaningful use and getting the full healthstory has not. Insist on receiving your information in usable form - it may save you and your physician a lot of time.

Have you had similar experiences - did you get your medical record in usable form or did you meet with full blown resistance. Let me know the good and the bad.

Declare Your Rights to YOUR Health Data

A small group of individuals including Adam Bosworth, Jamie Heywood, David C. Kibbe, Gilles Frydman, Alan Greene, and Sarah Greene, began drafting the Declaration and reaching out to others for feedback and improvement. The refined Bill is available at this site and is summarized at the end of this posting A Declaration of Health Data Rights

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A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
   
   
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

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What a great concept founded on the same principles from a couple of hundred years ago as part of the formation history of this country. It is the end of the secret code and hidden meanings in patients notes (think GOMER, Turf, Bounce and many others). Something that was highlighted in the ground breaking book by Samuel Shem; "The House of God" that was released in 1978 and was one of the first to reveal some of the struggles in the medical field and coping mechanisms that included coded abbreviations describing patients in less than complimentary terms. But all of that is a good thing and the full sharing of notes and information with the rightful owner has some added value - things that are wrong can be corrected. e-PatinetDave generated a big swell of interest when he highlighted the junk that exists in your medical records as he started to review his own making the point that we must get our data, manage it and review it. In fact as I said before - we need to become our own Primary Care Physician. Dave deBronkhart needless to say is an early supporter and in his post on the declaration makes the point:

These rights are as inalienable as the right to life itself.
Whose life depends on the data's accuracy, its availability?
Whose data is it, anyway?

I could not agree more and am reminded of a discussion I had three times prior to the birth of each of my children. I had the privilege of delivering my kids but took no clinical responsibility. The hurdle and message I had to get through to the obstetrician (OBGYN here) and midwife was that there was possibly only one other person in the room with bigger vested interest in the successful outcome - that would be my wife. So they had to know and believe that I would not get in the way or hinder their ability to deliver care in the event that medical intervention was required. Fortunately in all three cases we had normal and successful deliveries but had that not been the case I was ready to step aside at a moments notice. The same principle applies to my medical record - I want it to be correct and am more likely to have the time and knowledge to review and correct any mistakes.

There is of course a fly in the ointment here - one of knowledge of terminology (something that technology and support infrastructure may help along with review in conjunction with experienced clinical professionals). BTW - I see an emerging role for a patient supporter who has additional knowledge and training to help with this. Interestingly the Medical Editor has much of the knowledge necessary to help process and understand this data and this might well become one of the future roles of these knowledge workers. But there is also the issue of pre-existing medical condition coverage and the general mess that exists in the US related to patients inability to get coverage when they have a conditions - and in some cases being "turfed" out of the insurance plan after they are diagnosed with a condition. This creates an incentive to lie about conditions and conceal diagnostic information. The answer here of course is to fix the insurance problem and create an all encompassing affordable insurance system that spreads risk across the whole population not just the healthy. There is no incentive in the United Kingdom's NHS system to conceal clinical data for fear of lack of coverage since the system treats all.

As someone put it on the site - you can bet that Steve Jobs insisted on getting his Medical Records in Digital form and in a form that he could review and transfer to other doctors. I bet he got it too. But this is about everyone else's rights and our need for easy access to our information.

Go endorse these rights here or add a tweet with the HashTag #myHealthData and become a fan of the FaceBook Page that is here

Proportional News Coverage - Skewing Health Perception

Our perception of health and risk is all wrong and instantly accessible media is one of the key reasons. The recent coverage locally in the Washington area demonstrates the point well. A quick Google search of "Metro Crash" in the news reveals a total of 6,132 results (no doubt this will increase over time). A tragedy occurred on the Washington DC Metro when one train collided with one car riding up and over the other. There were several fatalities (9 at the time of writing this post) and a range of injuries from severe to minor. Coverage in the hour long evening news on the night of the tragedy could be summarized as follows:

• Evening News Length: 60 Minutes
• Advertisements Time: ~20 mins
• Time dedicated to the Crash: 35 mins
• Time dedicated to remaining news: ~5 mins

This disproportionate level of attention skews our perception of risk. Anyone watching the news last night would find themselves focusing on the safety of the Metro system. A quick search for statistics (interestingly the Wiki Page on the Washington DC Metro's Security and Safety had already been updated with details of the latest crash!) reveals a list of accidents but no suggestion of significant problems or challenges facing this system. In fact the overwhelming commentary suggests "The DC Metro has a very good safety record". When compared to data on Traffic Fatality Rates for DC:

• Traffic's most recent data for 2007: 44 fatalities (US total fatalities 41,059)
• DC Metro 15 (subject to change based on the most recent crash) over the last 20 years

Healthcare is the same and our perception of risk is skewed based on media coverage and our own personal experiences. If the news media gave proportional coverage based on risk and causes of death it might look something like this

• Evening News Length: 60 Minutes
• Advertisements Time: ~20 mins
• Time dedicated to the Heart Failure and Cancer: 20 mins
• Time dedicated to Cerebrovascular Disease: 4 mins
• Time dedicated to remaining causes of death 6 mins
  

How can technology help - in this instance it appears not to be. The instant availability of news, our ability to blog and tweet the latest information and the way in which information can take on a life of its own (can anyone say Swine Flu H1N1). We need to filter information and it is the link to our clinician that helps provider that input and balance. Id be the first to encourage everyone to be their own primary care practitioner - in fact I said so last week but this has to be balanced with appropriate input from trained experienced professionals. There are a range of tools to help diagnose problems including some online symptom checkers and they have a place in the range of choices available to us. But this is not about replacing the education and experience of your clinical team. This is about supporting them with appropriate information.

In a recent discussion with a clinical colleague he was adamant that clinicians must use technology and clinical systems to be able to deliver better and safer care. I agree that technology must be used to help support the decision making - in fact I think it is as much about information as it is about technology. Technology just helps bring the information closer to the decision making point. This can be as simple as patients searching for information and bringing in printed material to the consultation (I know to some clinicians this is their nightmare but I remain convinced that there is no stronger more dedicated advocate for the successful outcome than the patient themselves).

But getting to this data and providing it not only in digital form but better yet in a form that can be consumed and processed by electronic systems takes this to the next level. Linking this information to the full Healthstory allows for some automated processing and relevance mark up that will help in filtering useful from distracting data.

Personal health management includes the capture of information and the intelligent sharing of this between the patient, the clinician and clinical systems. This is a team approach and the team will help balance the perception of risk. Finding balance is one of the keys to navigating through life. Have you found balance and if so how. What's your perception of coverage, risk and the media coverage distorting our perception of risk.