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.

AHRQ Patient Videos - Become your Own Primary Care Provider

In an interesting use of technology and social media AHRQ (Agency for Healthcare Research and Quality) have a series of public service announcements directed at patients encouraging them to ask more questions before during and after your medical appointment and in one case have a song and dance spot (wmv file) encouraging patient participation and asking questions:

DOCTOR (spoken): Any questions?
PATIENT (spoken): No.
DOCTOR: You know...
DOCTOR: (begins singing): We're not magicians, we can't read your mind!
BACKGROUND (singing): Read your mind!

Fun video - important points. Questions are the answer. As the AHRQ group puts it you play a critical role in improving your own healthcare and making wise medical decisions. As I heard recently in one presentation - we all need to become our own Primary Care Provider - managing our own healthcare and understanding the choices available to us. As was pointed out in one of the videos - we spend more time asking questions when we order food or buy a cell phone than we do when we go meet out doctor for a check up or clinical problem. No doubt some of this is time challenges faced in busy clinical practices and a degree of intimidation that persists in relation to patients and their relationship with their clinical provider.

Part of the process must include bringing information to the appointment and referring to it as well as extracting as much information both verbally but more importantly in electronic form from the clinical visit. Asking for a copy of your medical record should be a standard request - over time this may become a more electronic activity and even include requests that ask for the record to be sent digitally to your own Personal Health Record. But for now a paper print out is already an improvement and will allow a better understanding of the appointment. There is no better advocate for a successful outcome that you and your family members and oftentimes more time available for you to focus on doing the research on your own condition and understanding of the choices available if not the personal choice to be made. The AHRQ site gives some guidance on questions to ask here - extensive list and not all questions are necessary for all interactions but a good starting point. It's your health - start taking care of it and participating in the process actively not as passive observer.

Had good or bad experiences share them here - maybe your doctor actually volunteers your record and discussion or maybe your clinical office refuses to provide you with all your records. Whatever your experience I'd love to hear from you.

Documentation and Coding Burdens

Medical economics published a great article "The Perfect Storm" and Peter Basch provided some additional commentary on this article and how the perfect storm should mean the end to E&M coding. As he points out prior to 1995 physicians were not paid for documentation but paid for services rendered. The main driver in recent years has been generating sufficient documentation to support the E&M Billing code.

Fear of failing a coding audit has made many senior physicians unlearn documentation skills developed over decades, regardless of whether they handwritten notes, dictate, or use an EHR.

The process of delivering care has been hijacked for the purposes of creating billing codes. In fact diagnostic coding systems can be traced back to King Henry VIII reign and the adoption of ICD coding in the early 1900's for morbidity and mortality. The codes were designed to track reasons for death and have been hijacked in attempt to fulfill a range of other purposes.

Multiple calls for scrapping what is an unfair burdensome system have occurred

In 2002, the Department of Health and Human Services convened a committee that concluded almost unanimously that the E&M system should be scrapped. Among its conclusions: The E&M system was not a fairer way of judging physician effort than the previous self-attestation method, it failed to add any new value, and it added an unreasonable burden to an already overburdened healthcare system

The Medicare Modernization Act of 2003 recommended to the Secretary of HHS that pilots of alternate payment systems be conducted

Unfortunately we remain locked into a process that adds little or no value to the process of caring for patients. There is an opportunity to focus on the value of clinical documentation to contain useful information that helps in the care and treatment of patients.

This is the right time for the Centers for Medicare & Medicaid Services to reissue its call for pilots of payment and documentation schema without E&M coding requirements. This is the right time for physicians to reject the shameful organizing metaphor of E&M coding—"it's not what you do, it's what you document"—and replace it with a renewed focus on what our patients deserve: better healthcare

He's right - for the longest time the call to documentation has been about the coding and billing. We have an opportunity to demonstrate the value of rich meaningful clinical documentation. Instead of asking our clinicians to be data entry clerks filling in forms for the purposes of coding use existing technology and solutions to allow for the capture of rich detailed clinical content that includes the narrative but is computer interpretable. It is possible today - we have technology, solutions and a whole industry of medical knowledge workers that delivers much of what is required already. We can create the additional information necessary to feed the data hungry EMR as part of that process and as a residual benefit this information can feed a new payment system focused on delivering high quality efficient healthcare

Doctor Please Look at Me not Your EMR

A recent personal experience with a pediatric office that I have been attending with my children for the last 7 years provides some valuable insight into the effect of an electronic medical record on a typical busy general pediatric clinical practice.

A little history - this practice has been servicing patients in our area for many years. Currently there are 7 physicians on staff and they have regular hours and see patients 6 out of 7 days providing on call coverage at all other times. They are great, my kids like them and my wife and I both love the practice. I have been to the practice and watched the impact of the implementation of an Electronic Medical Record (EMR) over the last 18 months. I was there shortly after they went live with their new system and watched as the clinicians struggled with a large unwieldy tablet using a combination of tablet and keyboard entry that clearly was uncomfortable and difficult for a physician who in previous visit had been highly efficient with a pen and paper based record.

The most recent visit was simple physical examination immunization and paper work for participation in sports programs. What should have been a brief efficient visit was not but it was my 10 year old who pretty much summed up the experience

She (the doctor) spent more time looking at her computer than at me

Practical medicine is about body language, facial expressions and interpreting more than just what someone says. The picture below dates back some years to an implementation of an EMR I was involved with in 1993 - the patient in the bed is ignored by the 5 doctors focused on the EMR screen in the corner:

When you ask a patient if there anything else that's bothering them you don't just listen to the answer but look at their face and the way they behave. There are clear indication if this patient is going to drop some significant additional piece of information on you with the classical line, often delivered as the patient is standing up and reaching for the door know

Oh and by the way doc..."insert interesting/relevant piece of clinical data"....thought that might be relevant"

It's a well known phenomena - part of our general make up that prevents from arriving at the doctors office for a "routine visit" and when first asked if you have any problems opening with

Yes, I have been bleeding rectally for the last 3 days, it's fresh blood

We all dread sharing what in our heart of hearts we know is bad news even though most know that early detection, treatment and dealing with problems is a much better strategy than putting our head in the sand:



To be clear I am not leveling criticism at our physicians - they are doing the best with the hand they have been dealt. Their perception of the EMR has changed over the course of this implementation. Prior to the implementation (which predates the economic crisis and the current rush towards a set of incentives currently linked, albeit with poor clarity, to implementing an EMR) they were not excited by the prospect of imposition of technology. Their decision was driven by their lead physicians drive towards modernization and the belief that current paper based systems were failing them in delivering the best possible care. They reviewed the choices and selected based on their needs. During the implementation the sentiment was very clear - everyone was fed up with the additional overhead required to cope with the new system and the huge change required in their day to day work flow and clinical practice.

Now many months on things have settled down. In the words of one of their physicians - they love the ready access to all the information on their patients when they are seeing them. For the most part the presentation of patient data is helpful and easily navigated..........but the capturing of this information is a burden and interferes with the clinicians/patient relationship.

Clinicians need to look at their patients, they need to interact with their patients and technology should not interfere with this essential component of the diagnostic process. Computers can be part of that interaction but currently in the vast majority of implementations they are a distraction and interfere. As my 10 year old said

Why is the doctor more interested in her PC than in me?

In fact in a recent exchange the story is even more disturbing with the roll out of these EMR's. A clinicians recently shared with me that his clinical interaction had changed since the new EMR system had been implemented. Since the system presented him with a series of choices to questions he would ask questions designed to elicit responses that were featured in the list. If he thought a question might elicit a response that was not featured in the list of choices available he would avoid that question since documenting the response was a time costly exercise.

Dictation has long been tainted as a problem not a solution....but dictation has been the mainstay of capturing clinical information. We moved from hand written notes to dictation and transcription as the volume of information increased. It made sense because off loading the heavy lifting of creating a typed legible note was more efficiently done by someone who specialized in that process and was more cost effective than asking a clinicians to spend more time documenting and less time seeing patients.

Despite the bad rap dictation and transcription is the mainstay of clinical information today - 60% of the data we have on patients is generated by dictation and transcription. Of the remaining 40% the vast majority of this data comes from automated clinical systems including laboratory and imaging systems that generate data - not clinicians who currently generate somewhere in the region of 3-5% of this information input into EMR's today.

But to satisfy the informational needs of the EMR we need the clinical data. This is possible today and the technology is available to make the process of dictation and transcription not only more efficient and cost effective but generating the data necessary to fill the information void in the EMR's. Instead of just accepting the concept that physicians should become data entry clerks ask how you can use existing technology and services to allow doctors to focus on their patients not on an inanimate piece of technology

I'll leave it to my 10 year old to sum it up

I wish she (the doctor) would look at me not her computer

How have your experiences been in any recent visits to your doctors office. Do they have clinical systems and do they interfere with your relationship with your doctor(s)? Let me know - I'll publish any stories people are willing to share