This paper was released a few days ago - published on-line.
J Am Med Inform Assoc doi:10.1136/amiajnl-2013-002068
A personally controlled electronic health record for Australia
- Correspondence to Dr Christopher Pearce, Inner East Melbourne Medicare Local, 6 Lakeside Drive, Burwood East, VIC 3151, Australia; cpearce@iemml.org.au
- Received 2 June 2013
- Revised 6 November 2013
- Accepted 24 November 2013
- Published Online First 20 March 2014
Abstract
Objective On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.
Method Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance.
Results Patients are able to access any posted information through a web-accessible ‘consumer portal.’ Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information.
Discussion The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities.
Conclusions The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.
Here is the link.
It is important, to understand the paper, to access to full paper which sadly is behind a firewall which greatly reduces its accessibility.
Having carefully read the paper carefully what I took away was the reflection of the core problem of the PCEHR - namely that it is neither ‘fish nor fowl’ in being really not optimal for use by either clinicians or their patients.
This quote - from the issues discussion make it clear the authors see the difficulty.
“Information access
One of the significant proposed benefits is that consumers will have access to their information. As any health problem concerns the consumer, involving patients in their own care by sharing information promotes safety22 and benefits the shared decision model.23 However, despite this, clinical information is usually written with a clinical audience in mind and health literacy levels vary in the population.24 ,25 Test results are confusing and often opaque to consumers, and can be worrying when viewed out of context. Abnormal results can be clinically insignificant, and vice versa. Current plans are that pathology and radiology results will not be released to the PCEHR until reviewed by the ordering clinician. This process is problematic as it does not apply to existing clinical documents that may contain radiology or pathology information. Nor is it reasonable in the long term to treat these two categories of information separately. The ideal solution is to develop mechanisms whereby test results can be presented so that consumers can interpret and understand them, perhaps with access to supporting information and/or in conjunction with their healthcare provider. Access to information must be provided so as to empower patients, not confuse them.”
To me, to wind up with unresolved dilemmas of this sort reflects the lack of clarity in the design phase as to just what and who the PCHER was address.
The same issue emerges here:
“Workflow/benefit conundrum
One of the challenges for the program is that consumers derive most benefit, yet most of the workflow costs and change is borne by clinicians. This is exemplified by the SHS. While GPs keep information about allergies, etc in their own systems, ensuring that the data are complete, regularly collated, curated, and rendered fit for sharing is not part of their current remit. The program represents a change in workflow and leverages pre-existing effort and (under Australian law) the clinician's intellectual property. Patients may be seeing many specialists or other GPs for specific problems. GPs will have to ensure that data not currently included in their system are placed in an SHS. GP requests for specific funding for PCEHR activities have not been met, and instead GPs must use existing reimbursement items.
Part of the solution to this is to change the whole system, so that GPs have access to information (such as discharge summaries or specialist letters) they could not previously obtain. This indirect benefit of participating in the system is meant to counteract the direct ‘dysbenefit’ of workflow changes.”
Clearly at present the clinicians are not convinced the balance is fair!
There is also a sentence in the conclusion that causes me much concern.
“Central to the original build has been direct clinical leadership in the design to ensure clinical utility, assurance, safety, and ‘meaningful use’ so that the providers deployed by the consumer can and want to use the documents.”
I have to say I believe this to be incorrect - all I have heard indicates clinicians were only involved as an afterthought and it seems clear this has been a factor in the confused shape of the system that was finally delivered.
Indeed is seems likely that the mass resignations of last year of the clinical leads appear to be due to their frustration at their lack of influence in the direction of the PCEHR Program.
See here:
In summary, to me this paper is a useful effort, which recognises clearly the utility and value of the PCEHR is far from established and that it may be that very fundamental change might be needed from here. I can find no real evidence that what consultation has been undertaken with clinicians has been taken as seriously as it might have been. To me that is one of reasons we find ourselves in the rather uncomfortable position we are now in.
This is not news to many of us however!
It needs, in passing, to be noted, that both authors have had significant paid associations with NEHTA - which they clearly acknowledge.
David.
Talk about marking your own homework.
ReplyDeleteThe degree of objectivity related to this paper is beyond negligible to be more appropriately infinitesimal...
The scale of "conflict of interest" with this paper based on the authors employment and association with NEHTA, and their paid contribution/participation in the PCEHR programme renders it completely contemptible!
In short, unadulterated propaganda masquerading as legitimate academic research...
Shameful.
Even if the design was good, that doesn't mean that what was built followed that design. Or that anyone was checking this.
ReplyDeleteThe clinical leads are obviously disappointed with what has been delivered. (See recent quotes from Mukesh.)
Still all is not lost if they can generate a few academic papers about the experience. I hope they acknowledged the significant funding by the Australian taxpayers.
It is interesting that they included the phrase: “Central to the original build has been direct clinical leadership in the design to ensure clinical utility, assurance, safety, and ‘meaningful use’ so that the providers deployed by the consumer can and want to use the documents.”
ReplyDeleteEither the statement is false or the clinical leads didn't do their job properly. What's worse is that it allowed NEHTA to deflect criticism by claiming clinical input was occurring when it clearly wasn't. How else can you explain the system we ended up with.
Those involved should be truly ashamed of themselves.
As a "clinical informatician" I struggled with the same statement that Bruce documented as well as few others.
ReplyDeleteIn fact "clinician" as a core element of this document would seem to me as a gaping hole.
The importance of "clinicians" in the whole process of implementation can be read in, Tierney WM., Kanter AS., Fraser HSF., C. B. A Toolkit For eHealth Partnerships in Low-Income Nations. Health Affairs. 2010;29(2):268-73.
Also to quote Coiera, ""We have to disrupt ourselves or we will be disrupted."
“The biggest information repository in most organisations sits within the heads of those who work there, and the largest communication network is the web of conversations that binds them. Together, people, tools, and conversations – that is the “system”.”
ENRICO COIERA [UNSW/AIHI] (Int. J. Med. Inform 69(2-3):2003,205-222)
I am not sure where the answer lies to progress from here however there are a lot of minefields ahead before any success can be achieved.
If we read the progression of the PCEHR project since 2012 (what appears to be the last set of data in the paper) all we have is essentially registrations and a significant absence of "clinician" uptake.
I would like to add a little more to the discussion on the JAMIA paper in relationship to "opt-in/opt-out".
ReplyDeleteWhen I worked in Kenya with Bill Tierney we found a significant lack of patient registration with "opt-in" which was significantly resolved by "opt-out".
On review of my email records I found this quotation from Bill that he posted to the AMIA site in August 2009. I believe it has significant relevance to the PCEHR options.
"I honestly believe that there will be those out there who, no matter what evidence we provide that EMRs are good for care, will be fundamentally against sharing any of their information with anybody at any time for any reason. I feel we will have to provide them with the option to opt-out of any EMR and keep their information off the grid, including test results and pharmacy information that would normally go into local records, information exchanges, etc. This information would have to be expunged from these systems. (Not sure how they would get medications refilled – perhaps drugstores could have a pass.) But the opt-out consent form needs to say that
• "This could result in harm to me and even my death due to lack of critical information at critical times," and
• "I agree to pay for my health care in cash because there will be no information for the doctor to submit to an insurance company for payment," and
• "I will not hold my health care providers liable for any damages caused by their not having the information they need to make the best decisions about my care."
And then providers need to have the ability to opt-out of caring for them in a data-hamstrung environment. Let them harm their own care without preventing the use of EMRs and other HIT for others. [Professor W. Tierney, Regenstrief Institute-14 August 2009]"