Sunday, April 03, 2011

Is The Personally Controlled Electronic Health Record (PCEHR) an Evidence Based Intervention? - A Draft for Comment.

I have been asked to write a short article for a Health Magazine. I thought I would try it out to get a little feedback. Please feel free to make this better and more accurate!

------

As a consequence of a series of recommendations in the Final Report to Government of National Health and Hospitals Reform Commission (NHHRC) in 2009 the subsequent Commonwealth Budget allocated almost half a billion dollars over two years to make a PCEHR available to all citizens who wanted one by July 2012.

As the PCEHR has evolved - largely away from the public gaze and in secret - it has morphed into a conceptual Health Summary and then a series of Event Summaries. The Health Summary contents are intended to be the basic individual demographic details and the information that is normally held - either electronically or on paper - in the General Practitioners Summary Record. This would include allergies, regular medications, key elements of history and current diagnoses. The Event Summaries are envisaged to be such things as a set of pathology results, referral letters and so on.

The idea is that the patient will be in control of this information and will, if they agree and consent, make the information held in this record available to clinicians caring for the patient.

The patient PCEHR record is to be held by a PCEHR system - presumably run by the Commonwealth Government - which will be accessible via a web portal for a clinician, with permission, to review. At a later date the patient will also be able to contribute their personal information and comments should they choose. The system is apparently intended to be a lifelong record which will be accumulated over time.

At present the system is intended to be available for patients who choose to have a PCEHR to register for access by July 2012 - now just 14 months away. The system is presently planned to operate in an ‘opt-in’ fashion where an individual takes a positive decision to register for and establish a PCEHR.

Key points to be noted about the presently proposed model of the PCEHR include:

First the PCEHR is an additional and clearly parallel health record to that held by the health care provider.

Second the PCEHR will contain a summary of the full patient record.

Third there is no clarity just what arrangements are intended to ensure the copy of the clinical information held in the PCEHR is properly synchronised and consistent with the current practitioner record.

Fourth all the documentation made available to date has been silent on just how the situation of a patient attending multiple practitioners is handled.

Fifth there is no mention of just what advantages the PCEHR proposal has over the wide range of alternatives that have been successfully implemented elsewhere and just why clinicians would find access to a record of this sort of any great value compared with known alternatives.

Sixth the PCEHR is not linked / attached to the practitioner record in any direct way. This means that functionality such as secure direct communication between clinician and patient, appointment and repeat prescription requests direct and access to current information in provider system is not available.

Sadly, as of the time of writing, the Department of Health has not released the PCEHR Concept of Operations for public review so some details provided above may turn out to be updated in some way or other.

On the basis of what is presently known just how based in evidence of real positive clinical impact are the present proposals?

I would suggest they are not and that the claimed rationale for this very substantial program is based on a combination of wishful thinking and ignorance.

My reading of the global literature leads me to the following conclusions.

First there is no working example anywhere in the world of a parallel longitudinal patient controlled electronic health record. There are successful examples in small countries (Wales and Scotland) of emergency health summaries derived from GP systems being implemented - but the information content is designed as the minimum necessary for emergency care - not as an information rich long term longitudinal record.

Second the evidence from the UK suggests that even when such summary information is made available to actual use of the information is quite low and the clinical impact - if any is hard to determine.

Third designing systems to be ‘opt-in’, while politically easier, ensures that adoption is slow - over years - and for this reason few will bother to look up such systems.

Fourth the present plans for seeking consent for both access and for information provision into the PCEHR will have very significant clinician workflow impacts - i.e. slow clinicians down - which will ensure that without major financial incentives to compensate for the time costs clinician usage will also be minimal.

Fifth, while there has been much research on the topic, it has not been possible to consistently demonstrated positive clinical outcomes through the use of Personal Health Records (PHRs). On the other hand the evidence for the value of provider Electronic Medical Records (EMRs), especially with embedded clinical decision support, is very strong indeed.

Sixth adoption of and the value of patient access to their clinical records is best seen in situations where the PHR is a linked extension of the provider EMR (as in Kaiser Permanente in the US) and where other functions are possible

Seventh it is clear that the so called ‘digital divide’ is alive and well with patient portals where often those who need them most are the least likely to be able to obtain access.

It is thus my contention - in this very short article - that the PCEHR proposal lacks an evidence base in circumstances where there are evidence based interventions which would make a more significant and important difference to health care delivery in Australia.

The PCEHR has been termed by one wag the ‘Politically Correct’ EHR. I would suggest it is a proposal that requires very active evidence based review that it is presently not receiving - due in part to the very large sums of money being splashed around by the Department of Health on the project - which seems to be resulting in some form of unthinking and uncritical e-Health ‘goldrush’. As presently announced the entire program has unrealistic timelines, lacks clear objectives and will, when it inevitably fails, I fear it will set the prospect for rational adoption of e-Health back a good decade.

Dr David More is a clinician and health informatician who blogs about e-Health in Australia at www.aushealthit.blogspot.com.

----- End article.

All comments welcome!

David.

7 comments:

Oliver Frank said...

This ia a pretty good summary in the short space that you are allowed.

Would it be worth adding that doctors and other health profesionals who are iformed about the management of clinical information believe that the money allocated to the PCEHR would be better spent instead on improving some fundamentals, such as creating and ensuring the implmentatin of necessary national standards for clinical information systems that will enable much better communication between and intergration of all parts of the health system?

Keith Heale said...

Overall it's clear and concise. Just fix up a few grammatical errors; eg there's a "demonstrated" that should be "demonstrate" and the last sentence needs fixing: eg "..and will, when it inevitably fails, set back the prospect for rational adoption of e-Health by a good decade."

On content, the first set of "key points" is rather variable: one and two are straight facts about characteristics of the PCEHR, three, four and six are about omissions or features lacking, while five is more subjective. I'd tend to pull point five from the list, but use it to begin the next section.

Incidentally, I've heard that the Concept of Operations will be made public "real soon now" -next few days?

Bruce Farnell said...

Very good summary David.

The only other area I can think of is the need for a CURRENT health summary - given that the PCEHR is not a summary record. Who is going to produce this? As you have pointed out, there is no linkage between the proposed PCEHR and GP systems so the likelihood of a current summary being present is nil.

Wave 2 Developer said...

I disagree with your first assumption:
"First the PCEHR is an additional and clearly parallel health record to that held by the health care provider."

The ConOps shows an indexing service that is intended to index records held by health care providers. The implementation of this is not yet defined, but I would hope it is based on XDS from IHE.

Many of your other objections seem to revolve around this assumption.

If you had said that the summary record is an additional and parallel record, then I would agree.

There are many other issues around the PCEHR that need addressing and discussion, including the updating of the summary record and the consent mechanisms.

Keith Heale said...

"The ConOps shows an indexing service that is intended to index records held by health care providers. The implementation of this is not yet defined, but I would hope it is based on XDS from IHE." posted by Wave 2 Developer

Ahh, that would be the ConOps which is still too secret to be read by the rest of us?

Regardless, I find it hard to imagine any system based on retrieving data, in real time, from the records of individual health providers. If I'm right about that then David's assumption of an "additional and clearly parallel health record" holds. However your advocacy of IHE's XDS approach does seem to warrant careful consideration.

Anonymous said...

How does one rate this article on the PCEHR?

Fanatically supportive
Tadfully biased
Smugly neutral
Sardonically scornful
Derisively despicable

Votes so far: 0
Days left to vote: ;)

Ravi Kumar said...

David, you are correct there are no substantial examples of patient controlled electronic health records in the world. Patient centred approach is still an experiment after billions of dollars spent world wide. However you can see some good examples of patient controlled manual (paper) health records being used quite effectively in developing countries such as India. Some of the big health care providers keep the summary with them and give a semi detailed record in folders/plastic bags to the patient to take care and bring with them to next hopital/doctor. Patients also seem to comply. Perhaps some lessons could be leant from the developing world? Drop me an email at Ravi.kumar@zanec.com if you want to discuss this further.