I live in a small country: Sweden has the population of Michigan on the land area of California, so you shouldn’t really have even heard of us. But I guess that ABBA, IKEA, H&M and the Nobel Prize sort of helps :).
Living in a small country of course has both pros and cons, and I will focus on the pros here. As a result of being a vocal ePatient in a small country, I am now involved in healthcare policy discussions on the highest levels and that is why I am posting here today, hoping for your help. I am trying to get a better understanding for the area of health IT, and especially electronic health records (EHR).
Could you help me with the following questions?
- What is the status of standards in the area of EHR:
- In the US?
- In Sweden?
- In the rest of the world?
- What is the status of openEHR? Has it been implemented on a large scale anywhere?
- What would your dream EHR/PHR look like?
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Layering expensive and complex technology atop a poorly functioning system results in an expensive and complex poorly functioning system. To a large degree, I think this describes what has happened to date in the US.
Instead of first defining the job (safe, high quality care) we have started by defining a set of metrics. Then we mandate tools to maximize good metrics. Safe and high quality care is not actually targeted.
A couple examples from (my) real world…
1. Fall risk. There is good evidence that a population at high risk for falls can be easily identified and that intervention in this group can prevent some falls and improve outcomes. The metric becomes the screening process. The EHR is used as a screening and documentation tool. Institutions report screening percentages. Actual evaluations of those who are identified by screening is not done. Interventions are not done. Actual outcomes are not monitored. Lots of time and money and electrons are diverted to an administrative task.
2. Someone decides that quality practices immunize their patients against invasive pneumococcal disease (IPD). Someone else arbitrarily determines the threshold immunization rate to be considered high quality. The EHR is used to collect data and clinicians are penalized if they are not successful at convincing X+ percent to be immunized. (Patient preference is not considered.)
3. The EHR is consistently used and adapted to be used for processes like the above, without regard to the impact on actual care.
4. No attempt is made to examine the actual care process and identify and fix places where the EHR could be improved or is causing problems.
The EHR, itself, is an inanimate tool. Giving me a high-end welding machine does not make me a good welder. Unless the EHR is designed as a clinical tool to meet clinical needs, it will not improve care. It may well improve data reporting.
Peter has given a physician’s perspective, and I will offer my patient’s perspective. First of all, most patients do not know that an EHR exists, or what it should do. They assume, quite wrongly, that their own doctors and related systems have long ago worked out ways to track the patients’ medical records and share them in a meaningful manner. They have also be taught by experience that they may not be the holders and carriers of these records, except for the immunization info that schools and travel might require.
Hearing that records are now digital or electronic, they assume that the above has been worked out as well! Only when a patient recognizes that this is not the case, and that their care has been delayed or endangered by this lack of system do they see the impact on care. This creates greater distrust in their doctors and the system, which also impacts healthcare.
Thus, any EHR must be readily accessible, and USEFUL to the patient, incorporate reasonable corrections by the patient and family as needed, as many errors can occur and multiply digitally. They should be portable by the patient, have additional access points through the patient can be educated in regard some terminology or disease.
THere are those who think that patients can’t or won’t understand all that is in the record, and thus, they should have have that access. This is often couched in paternalistic terms, ie., protecting the patient, minimizing anxiety, preventing poor decisions by the benighted patient, who won’t know what course of action to take, etc. That may be true, but it is the right of the patient to have that data, whether the patient chooses to read it, act upon it, share it or ignore it.
Until medical records in any format are generally available to the patient, there will be no essential reform of the health care system.
I am one of the clinical informaticians leading the international openEHR archetype modelling effort – the results of which you can see at http://www.openehr.org/ckm/.
The openEHR Foundation has recently published a white paper which outlines the current state of openEHR implementation and other activities. It is well worth a read: http://www.openehr.org/news_events/foundation_news.php?id=140
openEHR has the most traction in Europe, especially Norway, UK and Slovenia, plus Australia and Brazil. Japan has just announced an EHR strategy with openEHR at the centre. So it is gaining traction with a number of national eHealth programs plus even more broadly at an adhoc grassroots level.
Sweden was an early adopter of openEHR, but it fell into the doldrums when the previous eHealth program was disbanded. It is being reinvigorated with a major meeting to be held next week in Linkoping, aptly named “The clinical challenge – to lead or be led by health-IT” http://www.openehr.org/news_events/events.php?id=138. Last I heard over 120 ppl from all of the health regions were attending.
Hope this helps demonstrate some of the activity in the openEHR space.
My work is very focused on working with clinicians and other domain experts to get the ‘little data’ right. Only then can it be safely used in clinical systems, decision support, population health, big data, research, personal health records etc. Standardisation of the clinical data, including the critical verification of those data patterns by the clinicians, is a fundamental component of the eHealth ecosystem that is usually missing from any conversations I hear in traditional standards development organisations. And yet the momentum grows, from grassroots development right thru to national eHealth programs.
Hope this helps