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.

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.

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.