(Note - click on images to enlarge)
From the UK comes a really timely warning about the critical need to really move slowly and simply on Shared EHRs and our proposed PCEHR.
Scope of SCR reduced further
1 March 2011 Fiona Barr
Plans to allow hospitals and patients to add to the Summary Care Record have been put on hold as the Department of Health seeks to rein in both the content of the record and who can view it.
A revised scope document for the SCR, published by NHS Connecting for Health, makes it clear that, for the moment at least, information will be limited to details uploaded from GP records.
It says the scope of the SCR needs to be clearly defined “to avoid scope creep, which has the potential to lead to unexpected consequences, clinical safety issues or additional costs.”
The document confirms the conclusion of the DH's review of the content of the record that was published last October and which said initial content should be limited to details of a patient’s medications, allergies and adverse reactions.
The scope document says GPs can add additional information with the patient’s explicit consent, but qualifies this by saying it should only be information that will improve the quality of care provided by clinicians working out-of-hours or in an emergency care situation.
The DH has made it clear that it plans to limit access to urgent and emergency care settings and suspended a planned pilot of access in a community pharmacy, as EHI Primary Care revealed last month.
Two years ago, the DH was drawing up plans for ‘Release 2’ of the SCR. This would have involved staff in A&E departments and other NHS organisations entering data including discharge summarues, outpatient clinic letters and Common Assessment Framework documents.
The plan also included proposals to allow patients to enter their own data via the HealthSpace portal.
Last summer two hospitals, The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust and Pennine Acute Hospitals NHS Trust, were planning to upload non-GP summary data.
However, both have now abandoned those plans. In November, the Information Commissioner’s Office was told that additional feeds from secondary care were on hold.
More here:
http://www.ehi.co.uk/news/primary-care/6681/scope_of_scr_reduced_further
I have had a look at the scope document and the planned scope of the shared record is now:
----- Begin Extract
2 Scope of the SCR
2.1 Content of the SCR
The SCR is designed to provide a summary of clinical information which would be deemed useful in the event of urgent or emergency care for a patient, particularly when other sources of information may not be readily available. The over arching aim is that the SCR will contain only significant aspects of a person’s care, those deemed to deliver benefit to a patient when receiving urgent and emergency care.
When a patient’s SCR is first created it will contain details of:
• Medications;
• Adverse reactions; and,
• Allergies.
This will be copied to the Summary Care Record from the patient’s GP record, under “informed implied consent”.
Following this a patient and their doctor may wish to add additional information to the patient’s Summary Care Record. This must only be added with the explicit consent of the patient.
Any additional information will be selected to allow a greater quality of care to be delivered to the patient by other clinicians who may access the patient’s SCR whilst providing treatment in an urgent or emergency setting. A specific example of this additional information is the inclusion of End of Life Care Plans for patients undergoing palliative care.
An update will be sent to the SCR as information in a patient’s General Practice record is changed, for example, as new medications are prescribed. Each update sent to the SCR is time and date stamped and replaces the information already held. The latest version of the patient’s SCR is the only one available for staff giving care to the patient.
---- End Extract
So here after over a decade’s research trial and work we find what the UK has worked out is practicable and useful - and it is just nothing like the over-engineered and doomed to fail in my view PCEHR.
We have to walk before we can fly and showing a level of competence by getting the very basics in place would be a really good place to start!
The following diagram shows just what is intended by NEHTA - and the scale and complexity just boggles the mind from an organisation that has never actually delivered an operational system to anyone anywhere.
Of course we have seen all this before. Compare this with NSW HealthELink in 2006. Same excessive complexity and over done approach!
Needless to say HealthELink is now a small historical note in the History of E-Health in NSW.
Remarkably many of the flaws in HealthELink (workflow issues, lack of incentives and usefulness) are just the same in the PCEHR.
This is just utter madness! We really do need to take things one step at a time and not let over ambitious engineers ruin any hope for success.
David.
11 comments:
Dear Dr David - i have read your blog for many a year now - sorry but perhaps you should have retired last year ? This country has been in desperate need of a unique identifier and a national programme that ensures that sick peoples medical history is made available to us clinicains that actually take an interest and want to improve the service we can offer. If you think this is too hard then shut up and let us that want to make it work get on and do it - Thanks
James,
The people who are doing this have had over a decade to deliver and have failed. They now have deeply flawed and wasteful plans to move backwards in my view.
Has any of what NEHTA has done actually delivered anything other than a collection of .pdfs?
I am not saying the needs you mention do not need to be addressed - just that this lot will let you down.
There is a big difference!
Thanks for your passion.
David.
Dear James,
David has been wanting it to happen for many years and that experience has, I am sure been hard won. One of the benefits of experience is pattern recognition and the patterns are firmly in the "bull" corner at this time.
The problem is that all this money and "bull" does not just waste time but impairs the progress of real advances which fail to get support because these fools have fist fulls of taxpayer dollars which do tend to attract the crowd.
So for our $467M we actually get a slowdown of real advances while everyone watches the fool dispose of our money. Nehta are the equivalent of the colourful cancer cure proponent who will skip the country when they have extracted enough dollars from their victims. It is the experienced clinician who can spot the fraudster, even though they don't have a solution to offer the patient themselves. To the public the promises sound to good to be true, and they are.
We need to return to the basics of improving the quality and reliability of what is currently working. The big bang solution is a fraud.
David,
I take umbrage at your suggestion that engineers should be singled out to take the rap for any "utter madness" - be they over ambitious or otherwise!
Engineers probably have the least influence on the course of the PCEHR and are the profession least likely to embrace the PCEHR as currently envisioned. Professional engineers are overwhelmingly rooted in the real world and are unlikely to have had any real say in any of this. Is the Minister for Health an engineer? Are there engineers steering DoHA's e-Health Branch? Were there any engineers on the National Health and Hospital Reform Commission that came up with the idea of the PCEHR and suggested it could be built in 2 years? Are there any engineers on the NEHTA Board?
It seems to me that the main drivers of the PCEHR vision are several bureaucrats, clinicians and a politician or three. It also appears to me that the people with most influence on its design and content are clinicians, bureaucrats and consumers, in that order. There is tremendous pressure from many quarters to make the design more complex than can be engineeringly delivered, in order to meet the aspirations of bureaucrats, clinicians and consumers.
I may be wrong, but I don't see the influence of engineers in the diagrams that you have shown. Besides, I suspect that these sorts of mock up screens are more for marketing and illustrative purposes to get stakeholder buy-in of a vision, rather than reflecting any real design artefact. And it is more on these grounds that they should be examined and questioned.
How achievable is this vision? What would need to happen? How long would it take? What infrastructure and standards would be needed? What are the risks? What are the obstacles? Who needs to be involved and at what stage? How much would it really cost? These are the sorts of questions real engineers ( as well as the odd clinician blogger) ask.
I can't help feeling you might just be shooting the messenger! Perhaps the messenger(s) need to be more vocal. But I'm sure you know how difficult that is under the current regime.
Once more, the problem comes back to the lack of proper governance, not just of the PCEHR, but of most national e-health (in)activity in the past 10 years.
Eric,
I was making the generic point that, whatever the cause, there tends to be a push to over-engineer these plans. Who does it is as you say a mix of all the actors involved.
Also, as you say, and I have said repeatedly, the key issues are leadership quality and governance. Both have gone missing in OZ!
David.
I think a major problem is a lack of engineering input into the plans. What DoHA fails to understand is that computers are very stubborn and fail to response to political pressure, cursing and threats from politicians or CEOs.
They do however purr when subject to attention to detail, extensive regression testing and building on top of working standards.
This is nothing like what Nehta are doing of course!!!
Eric
There are no engineers but there sure are plenty of bankers from David Gonski down. And boy oh boy are they banking the money like it's going out of style.!!!
You are loosing sight of the big picture. sure, lessons need to learned from failures AND success elsewhere. But the alternative to moving forward is accepting the status quo of clinician treating patients while being totally blindsided to their medical history is much worse. Sure I'd want an opt-out system and I wish that politicians and NeHTA would cut the (PC) crap and tell everyone that for their own good and for the greater good we need to have their clinical information well organized and accessible to clinicians (a "simple" shared EHR) - but that's not going to happen and something is better than nothing. If we keep focusing on the failures and our lesson is - let's stop trying, we might as well all look for another industry to work in.
Hang on here.
You are assuming that the PCEHR as proposed will actually be implemented and actually work. I happen to think it is rubbish policy and will not work without the necessary pre-work which has simply not been done.
It all sounds so simple - but as the UK and others have discovered - it simply is not!
The interference of politics in system design goals and objectives, the apparent incompetence of the system designers and the lack of appropriate leadership and governance assures that outcome I believe.
Bottom line, as far as I can tell there is no such thing as a 'simple shared EHR' that can work in the currently planned environment.
David.
David, Have you actually delivered a working EHR production system?
Not on the scale envisaged here. Have you?
If so tell us about it so we can see how it compares to the PCEHR proposal.
At the same time you might disclose any commercial interests you or your company have in the PCEHR program?
I have none.
David.
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