Things With The PCEHR Enquiry Are Really Looking Up.

I just had a very nice thank you letter from the Panel Chair - Review of the PCEHR Richard Royle.

It was a very nice touch and indicated that analysis was underway on the submissions and that the Interim Report would be provided to the Minister before the end of the calendar year.

How different to the way my submissions have usually been treated by DoHA.

I guess all we can now do is wait to see what the review concludes.

David.

Some Compelling Analysis Of The PCEHR Submissions So Far.

This arrived via e-mail and I am publishing it with permission.

-----

Comments on the PCEHR can be grouped into three categories

1. From those with a vested interest in seeing the PCEHR in a favourable
light

2. From those concerned with the functional details, but who don’t
understand the real weaknesses of the system

3. From those concerned with the fundamentals – the state of the
information in the system

By far the most critical are those comments from multiple commentators
that the information in the PCEHR is unreliable, un-trustworthy,
incomplete and could potentially do harm.

Professor Enrico Coiera sums it up with this:

“The PCEHR like any healthcare technology may do good or harm. Correct
information at a crucial moment may improve care. Misleading, missing or
incorrect information may lead to mistakes and harm. There is clear
evidence nationally and internationally that health IT can cause such harm.”

He then goes on to detail multiple safety risks in the current PCEHR.

Professor Enrico Coiera’s opinion is supported by others and they all go
to the crux of the problem with the PCEHR – trust and risk, or more
importantly, the lack of them.

The sooner the PCEHR is taken off line the better. Health and NEHTA have
been warned by people far more knowledgeable than they are that there is
a significant safety risk. If harm results from use of the PCEHR, they
had better have a good defence lined up.

-----
This is a useful way to frame what you read.

Many thanks for sending it along!

David.

Professor Enrico Coiera's Submission On The PCEHR - Safety Emphasis.

Submission to the PCEHR Review Committee 2013

November 29, 2013

Professor Enrico Coiera, Director Centre for Health Informatics, Australian Institute of Health Innovation, UNSW
Date: 21 November 2013
The Clinical Safety of the Personally Controlled Electronic Health Record (PCEHR)
This submission comments on the consultations during PCEHR development, barriers to clinician and patient uptake and utility, and makes suggestions to accelerate adoption. The lens for these comments is patient safety.
The PCEHR like any healthcare technology may do good or harm. Correct information at a crucial moment may improve care. Misleading, missing or incorrect information may lead to mistakes and harm. There is clear evidence nationally and internationally that health IT can cause such harm [1-5].
To mitigate such risks, most industries adopt safety systems and processes at software design, build, implementation and operation. User trust that a system is safe enhances its adoption, and forces system design to be simple, user focused, and well tested.
The current PCEHR has multiple safety risks including:

1. Using administrative data (e.g. PBS data and Prescribe/Dispense information) for clinical purposes (ascertaining current medications) – a use never intended;
2. Using clinical documents (discharge summaries) instead of fine-grained patient data e.g. allergies. Ensuring data integrity is often not possible within documents (e.g. identifying contradicting, missing or out of date data);
3. Together these create an electronic form of a hybrid record with no unitary view of the clinical ‘truth’. Hybrid records can lead to clinical error by impeding data search or by triggering incorrect decisions based on a partial view of the record [6];
4. Shifting the onus for data integrity to a custodian GP avoids the PCEHR operator taking responsibility for data quality (a barrier to GP engagement and a risk because integrity requires sophisticated, often automated checking).
5. No national process or standards to ensure that clinical software and updates (and indeed the PCEHR) are clinically safe.

The need for clinical safety to be managed within the PCEHR was fed into the PCEHR process formally [7], via internal NEHTA briefings, at public presentations at which PCEHR leadership were present and was clear from the academic literature. Indeed, a 2010 MJA editorial on the risks and benefits of likely PCEHR architectures highlighted recent evidence suggesting many approaches were problematic. It tongue-in-cheek suggested that perhaps GPs should ‘curate’ the record, only to then point out the risks with that approach [8].
Yet, at the beginning of 2012, no formal clinical safety governance arrangements existed for the PCEHR program. The notable exception was the Clinical Safety Unit within NEHTA, whose limited role was to examine the safety of standards as designed, but not as implemented. There was no process to ensure software connecting to the PCEHR was safe (in the sense that patients would not be harmed from the way information was entered, stored, retrieved or used), only that it interoperated technically. No ongoing safety incident monitoring or response function existed, beyond any internal processes the system operator might have had.
Concerns that insufficient attention was being paid to clinical safety prompted a 2012 MJA editorial on the need for national clinical safety governance both for the PCEHR as well as E-health more broadly [9]. In response, a clinical governance oversight committee was created within the Australian Commission on Safety and Quality in Health Care, (ACSQHC) to review PCEHR incidents monthly, but with no remit to look at clinical software that connects to the PCEHR. There is however no public record of how clinical incidents are determined, what incidents are reported, their risk levels or resulting harms, nor how they are made safe. A major lesson from patient safety is that open disclosure is essential to ensure patient and clinician trust in a system, and to maximize dissemination of lessons learned. This lack of transparency is likely a major barrier to uptake, especially given the sporadic media reports of errors in PCEHR data (such as incorrect medications) with the potential to lead to harm.
We recently reviewed governance arrangements for health IT safety internationally, and a wide variety of arrangements are possible from self-certification through to regulation [10]. The English NHS has a mature approach that ensures clinical software connecting to the national infrastructure complies with safety standards, closely monitors incidents and has a dedicated team to investigate and make safe any reports of near misses or actual harms.
Our recent awareness of large-scale events across national e-health systems – where potentially many thousands of patient records are affected at once – is another reason PCEHR and national e-health safety should be a priority. We recently completed, with the English NHS, an analysis of 850 of their incidents. 23% (191) of incidents were large-scale involving between 10 and 66,000 patients. Tracing all affected patients becomes difficult when dealing with a complex system composed of loosely interacting components, such as the PCEHR.
Recommendations:

1. A whole of system safety audit and risk assessment of the PCEHR and feeder systems should be conducted, using all internal data available, and made public. The risks of using administrative data for clinical purposes and the hybrid record structure need immediate assessment.
2. A strong safety case for continued use of administrative data needs to be made or it should be withdrawn from the PCEHR.
3. We need a whole of system (not just PCEHR) approach to designing and testing software (and updates) that are certifiably safe, to actively monitor for harm events, and a response function to investigate and make safe root causes of any event. Without this it is not possible for example to certify that a GP desktop system that interoperates with the PCEHR is built and operated safely when it uploads or downloads from the PCEHR.
4. Existing PCEHR clinical safety governance functions need to be brought together in one place. The nature, size, structure, and degree to which this function is legislated to mandate safety is a discussion that must be had. Such bodies exist in other industries e.g. the civil aviation safety authority (CASA). ACSQHC is a possible home for this but would need to substantially change its mandate, resourcing, remit, and skill set.
5. Reports of incidents and their remedies need to be made public in the same way that aviation incidents are reported. This will build trust amongst the public and clinicians, contribute to safer practice and design, and mitigate negative press when incidents invariable become public.

References
[See parent blog for links to papers that are not linked here]
1. Coiera E, Aarts J, Kulikowski C. The dangerous decade. Journal of the American Medical Informatics Association 2012;19:2-5
2. Patient safety problems associated with heathcare information technology: an analysis of adverse events reported to the US Food and Drug Administration. AMIA Annual Symposium Proceedings; 2011. American Medical Informatics Association.
3. Institute of Medicine. Health IT and Patient Safety: Building Safer Systems for Better Care. The National Academies Press: The National Academies Press., 2012.
4. Sparnon E, Marela W. The Role of the Electronic Health Record in Patient Safety Events. Pa Patient Saf Advis 2012;9(4):113-21
5. Coiera E, Westbrook J. Should clinical software be regulated? MJA 2006;184(12):600-01
6. Sparnon E. Spotlight on Electronic Health Record Errors: Paper or Electronic Hybrid Workflows. Pa Patient Saf Advis 2013(10):2
7. McIlwraith J, Magrabi F. Submission. Personally Controlled Electronic Health Record (PCEHR) System: Legislation Issues Paper 2011.
8. Coiera E. Do we need a national electronic summary care record. Med J Aust 2011 (online 9/11/2010);94(2):90-92
9. Coiera E, Kidd M, Haikerwal M. A call for national e-health clinical safety governance. Med J Aust 2012;196(7):430-31.
10. Magrabi F, Aarts J, Nohr C, et al. A comparative review of patient safety initiatives for national health information technology. International journal of medical informatics 2012;82(5):e139-48

Here is the link:

http://coiera.com/2013/11/29/submission-to-the-pcehr-review-committee-2013/

Republished with permission.

Excellent contribution I believe.

David.

HISA Offers Views Gathered From A Pretty Large Survey. The Recommendations Are Very Self- Serving And Fail To Grasp The Main Problems in My View.

Here is the link:

http://c.ymcdn.com/sites/www.hisa.org.au/resource/resmgr/docs/hisa_himaa_pcehr_inquiry_sub.pdf

Short Extract.

The Recommendations are:

Section 14.0

Recommendations

Involvement, Expectations, Consultation and Use

Recommendation 1:

That the PCEHR Review recommends the immediate, comprehensive and extensive integration of health information/informatics professionals into  current and future PCEHR and related infrastructure design, build and implementation and, importantly, health provider infrastructure’s implementation of the PCEHR, and its linkage with other EMRs and fund management IT.

Barriers, Usability and Future Work Required

Recommendation 2:

The PCEHR Review recommends the high and immediate prioritisation of the engagement of health and health information professional associations and colleges in the change management process required to ensure adoption of the  PCEHR and  enable its vital contribution to health reform success.

Key Drivers and Incentives

Recommendation 3:

The PCEHR Review Panel consider  engaging HISA and HIMAA to undertake a  comprehensive qualitative analysis of the 4590 individual free text responses  contributed by the 673 respondents

This analysis should be done over the course of the next 1-2 weeks to provide valuable data to inform  the Panel’s final report, or post-report to inform report implementation Strategies to Improve Adoption in Three Categories

Category One –Simplify Registration Processes & Improve Training & Support Approaches

Recommendation 4:

The PCEHR Review recommends the convening and resourcing of a handpicked  working group to simplify all aspects of the PCEHR registration processes for both HIMAA and HISA: Experts in e-health, health informatics and health information management HISA-HIMAA PCEHR Inquiry Submission providers and the public.

This working group need to have regard for a balance between the need for controls and accountability, but also need to clearly recognise that the current processes are acting as severe impediments to the whole system and arrangements. This work needs to be completed by early February 2014.

Recommendation 5:

The PCEHR Review recommends that, in parallel with recommendation 4, the implementation of phase II of the recent workforce productivity, change and adoption work with AML Alliance on E‐Health Support Officers’ competencies and skills be progressed.

This work, which includes the proposed Competency  Framework Toolbox, needs to be completed by late February 2014 so the E Health  Support Officers are better equipped to support primary care providers to embrace the PCEHR , particularly  as more registrations are completed through the simplified  registration processes.

Category Two –Medication Management through Engaging the Pharmacy Guild plus Radiology & Pathology

Recommendation 6:

The PCEHR Review recommends the development of a strategy to achieve the holistic and seamless sharing of pathology and radiology information in the PCEHR.

This strategy must be practically designed, with the support of the  Pharmacy Guild andthe respective pathology and radiology professional bodies, such thata richer functionality of the PCEHR can be more readily achieved.

Category Three Proper Participation by Hospitals with Discharge Summaries Universally Implemented

Recommendation 7:

The PCEHR Review recommends the consideration by COAG ,through AHMAC of how to fast-track  universal hospital participation in the PCEHR .

The initial focus needs to be upon the implementation of universally available electronic discharge summaries in all jurisdictions by mid-2016. This particular functionality should provide a clear purpose and focus for the universal engagement of the hospital sector throughout Australia.

Recommendation 8:

The PCEHR Review recommends harnessing the currently convened multi‐jurisdictional CIO group as the vehicle for development of a practical and collaborative model for designing a national roll out scheme for the PCEHR and associated infrastructure for enabling universal hospital participation.

Private Sector Involvement and Standards

Recommendation 9:

The PCEHR Review recommends vesting authority for the development and maintenance of technical and professional standards and associated engagement and change management strategies in the professional bodies concerned, rather than in the private sector or in government bureaucracy.

Government, however, should play a central role in auspicing, funding and supporting this authority and the infrastructure required for the PCEHR (terminology, identifiers, secure messaging).

-----

HISA and HIMAA commend this submission to the PCEHR Review Panel, and wish it well in its deliberations. Our two organisations would welcome further involvement in the review process, either within the Panel’s current terms of reference or beyond.

-----

Really they just seem to want more paid work and fail to see what an awful project this actually is. They simply assume the PCEHR is a wonderful and glorious thing and should roll on forever.
Where are the recommendations as to what is needed to be reviewed and properly fixed in the PCEHR, what is wrong with the status quo etc. Just adding extra functions to a flop is hardly a plan.
What nonsense!

David.

It Looks Like Patient Portals Do Not Add All That Much In Chronic Disease Care. Maybe.

This appeared a few days ago.

No evidence that messaging portals reduce costs, improve outcomes, review of studies shows

By Andis Robeznieks

21 November, 2013

A key to the patient-centered medical home model is enhanced patient-physician communication—often through using a secure-messaging portal connected to an electronic health record. But according to a systematic review of 46 studies published over 22 years, there is insufficient evidence that portals improve outcomes or lower costs.

In the Veterans Affairs Department-funded review, researchers from VA and academic medical centers in Los Angeles and Indianapolis did find that portal use was associated with improved outcomes for patients with chronic diseases such as diabetes, hypertension and depression, but these improvements were also linked to portals used in case management. The researchers were unable to discern whether the portals themselves made a difference.

“Portals are being created as part of a movement to make patients more active participants in their care,” the researchers wrote. “Our review suggests that there are some potential barriers to achieving this goal, including disparities in who accesses these portals and instances of suboptimal patient attitudes of their worth. More widespread acceptance will require attention to overcoming these disparities and addressing usability and patient-perceived value to engage certain populations that are not readily embracing personal health-record systems.”

Lots more here:

http://www.modernhealthcare.com/article/20131121/blog/311219996

Here is the abstract.

19 November 2013

Electronic Patient Portals: Evidence on Health Outcomes, Satisfaction, Efficiency, and Attitudes: A Systematic Review

Caroline Lubick Goldzweig, MD, MSHS; Greg Orshansky, MD; Neil M. Paige, MD, MSHS; Ali Alexander Towfigh, MD; David A. Haggstrom, MD, MAS; Isomi Miake-Lye, BA; Jessica M. Beroes, BS; and Paul G. Shekelle, MD, PhD

Ann Intern Med. 2013;159(10):677-687. doi:10.7326/0003-4819-159-10-201311190-00006

Background: Patient portals tied to provider electronic health record (EHR) systems are increasingly popular.

Purpose: To systematically review the literature reporting the effect of patient portals on clinical care.

Data Sources: PubMed and Web of Science searches from 1 January 1990 to 24 January 2013.

Study Selection: Hypothesis-testing or quantitative studies of patient portals tethered to a provider EHR that addressed patient outcomes, satisfaction, adherence, efficiency, utilization, attitudes, and patient characteristics, as well as qualitative studies of barriers or facilitators, were included.

Data Extraction: Two reviewers independently extracted data and addressed discrepancies through consensus discussion.

Data Synthesis: From 6508 titles, 14 randomized, controlled trials; 21 observational, hypothesis-testing studies; 5 quantitative, descriptive studies; and 6 qualitative studies were included. Evidence is mixed about the effect of portals on patient outcomes and satisfaction, although they may be more effective when used with case management. The effect of portals on utilization and efficiency is unclear, although patient race and ethnicity, education level or literacy, and degree of comorbid conditions may influence use.

Limitation: Limited data for most outcomes and an absence of reporting on organizational and provider context and implementation processes.

Conclusion: Evidence that patient portals improve health outcomes, cost, or utilization is insufficient. Patient attitudes are generally positive, but more widespread use may require efforts to overcome racial, ethnic, and literacy barriers. Portals represent a new technology with benefits that are still unclear. Better understanding requires studies that include details about context, implementation factors, and cost.

Primary Funding Source: U.S. Department of Veterans Affairs.

Here is the link:

http://annals.org/article.aspx?articleid=1770672

It seems to me that this study may have been compromised by taking a 20 year period, or at least dividing the old from the recent studies. I suspect we might find that the richer functionality portals now in use (with messaging to docs, appointment making, repeat prescriptions etc.) might be a good deal more successful.

What this study may very well suggest is that non-functional portals (like the PCEHR) are not all that useful.

Clearly more research needed!

David.

Is Seems The RACGP Is Somewhat Disillusioned Wiith The PCEHR.

Here is what they are saying:

RACGP

Submission to the Review of the Personally Controlled Electronic Health Record

Executive summary

The RACGP supports a national shared electronic health record system and the clinical benefits of healthcare providers accessing healthcare information not available via normal communications.

The RACGP has a strong history of being at the forefront of innovations in eHealth and is supported by key general practice leaders in this field. The RACGP is therefore ideally placed to guide governments and other stakeholders on what is reasonable, workable and useful for general practitioners in Australia and provide resources and education to support this.

The RACGP’s submission consists of two parts:
1.
Part A
Recommendations to address the key issues and refocus on the successful delivery of core foundation services
2.
Part B
Provides specific commentary on the review’s Terms of Reference

The RACGP strongly supports the adoption of 10 key recommendations:
1.
Suspension of the current PCEHR development program.
2.
Consolidation of existing PCEHR functionality, especially the Shared Health Summary.
3.
Direct access to the web-based provider portal views via GP clinical desktop software.
4.
An ongoing work program focusing on core foundation services.
5.
Universally available, interoperable secure message delivery.
6.
A transparent product development life cycle, with the RACGP as a priority stakeholder.
7.
Clinically useful and safe eHealth products that align with clinical systems and workflow.
8.
Strong, streamlined and transparent governance overseen by a single entity responsible
that is accountable for all eHealth product design and release.
9.
Clinician-developed and led education and training that is supported and delivered to general practice by the RACGP.
10.
Development of a value and benefits business case to support continued general practice participation in the PCEHR

.

General practice, through the RACGP needs to be an integral part of this process

----- End Exec Summary.

Looks like they are not all that keen on this just rolling along at all!

Read the full submission here:

http://www.racgp.org.au/yourracgp/news/reports/201311pcehrreview/

Enjoy

David

There Seem To Be A Lot Of Docs Not Happy With The Way E-Health Is Being Run.

This appeared a few days ago:

'We got screwed over': e-health GPs speak out

20 November, 2013 Paul Smith

"We got screwed over, didn’t we? We didn’t realise. We were there in the middle of it all trying to make it work, but we were like the woman with the abusive husband, thinking every tomorrow would be a sunny day.”

This is one voice of the many senior doctors who joined the National E-Health Transition Authority to create Australia’s personally controlled electronic health record (PCEHR) system.

It was envisaged that the system would help track patients’ labyrinthine journeys through the health system. One of its central aims was simply to save aeroplanes of patients from falling out of the sky as a result of the two million medication misadventures that happen each year.

The lesson etched in capital letters across the tombstone of every dysfunctional high-cost e-health project around the world has yet to be learnt here, these doctors say. And the lesson is simply that you are wasting your dollars unless you make a system that doctors can trust and use, that offers clear, real-world improvements to their care of patients.

The narrative arc of Australia’s e-health panto-tragedy is reaching a critical phase. The PCEHR is not quite buried. But the new Federal Government’s review of the system — announced this month — is being sold as one last chance to rewrite a script where the corpse is resurrected.

Australian Doctor recently spoke with the main clinical players to get an idea of what has gone wrong and what needs to be done about it. Many of them preferred to remain anonymous, but their stories tell a tale of bureaucratic bungling, expensive errors and minimal understanding of what doctors want.

Chasing the numbers
One measure of the political sensitivities wrapped up in the PCEHR is the effort and expense that was lavished on signing up patients. The government had declared it wanted 500,000 patients registered by July this year. And in politics, when you give bureaucrats a target,  the target gets met — however ludicrous the means employed.

Recruiters were sent out to Medicare offices to get people to put their names down. There were recruiters also camped out in EDs, signing up relatives of those needing treatment. The target was met, just, and the political blushes avoided.

Today, there are more than one million people registered. But who are they? And what benefit has that registration gained them? The joke is that the backpacking community is fully on board with a PCEHR. The problem is that backpackers and many other registrants have no immediate need for e-health records. And so there is no incentive for doctors to enter and curate the information onto the system.

As once clinician put it:

“What we wanted was a group of frequent flyers in the system, those going in and out of hospital, through the hands of different doctors." 

"You, as a doctor, would have seen benefits in terms of the care of the patient. Signing up young people with no real health problems ... what is the point?”

The problem is borne out by the numbers. How many GPs have become nominated providers managing a patient’s e-health record? There has been no response from the Department of Health to that question. How many patients have a ‘live’ shared e-health summary? Australian Doctor has been told about 4000. It is these numbers that furnish Health Minister Peter Dutton’s calculation that the PCEHR is costing $200,000 for every patient it is currently supporting.

Many more war-stories (some which seem a bit exaggerated - possibly by frustration) are found here:

http://www.australiandoctor.com.au/news/news-review/we-got-screwed-over-didn-t-we-eheath-doctors-speak

What this really show us is that it is very easy for a reporter to find a good number of doctors who have had contact with Government run e-Health have had very bad experiences.

While ever Australian e-Health is being run in a fashion that leads to outcomes like this we can be sure no progress will happen. The big picture, governance, legislation and trust are all important.

I hope the review team are listening.

David.

There Are A Few More PCEHR Enquiry Submissions On Line.

For the keen readers:

The AMA is here:

https://ama.com.au/media/too-much-personal-control-reduces-effectiveness-pcehr

This is a summary and there is a link to the detail at the end of the document.

The Consumer Health Forum:

https://www.chf.org.au/pdfs/chf/1129_Review-of-PCEHR_Nov-2013.pdf

 The Consumers E-Health Alliance

http://www.pulseitmagazine.com.au/images/stories/pulse/pcehr/ceha_submission.pdf


If I spot others will add them - so check back occasionally. If anyone spots others please let us all know via comments.

David.