Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Monday, May 04, 2009

The NHHRC Gets E-Health Very Badly Wrong at the First Go!

The following is going to form the basis of my submission regarding the e-Health plan proposed by the National Health and Hospital Reform Commission (NHHRC).

First some press reaction to last week’s announcement.

Quickly of the mark we have the Australian IT Section.

Patients may have to foot e-health bill

Karen Dearne | April 30, 2009

PATIENTS may have to pay for their own electronic health records, with the key healthcare reform body urging the federal Government to mandate "person-controlled" systems commercially available from providers like Microsoft and Google.

"We believe that the rapid development of new IT applications required across the health sector to give people the opportunity to have an electronic health record is best undertaken by commercial IT developers in an open competitive market," the National Health and Hospitals Reform Commission (NHHRC) said in a supplementary paper released today.

While tech-savvy patients are increasingly keen to manage their own medical records, public agencies worldwide have opted to maintain control over health information-sharing systems to ensure confidentiality, technical security and data quality.

But in an unexpected turnaround, the NHHRC said "every Australian should be able to choose where and how their personal e-health record will be stored, backed-up and retrieved", and that the record should be "at all times owned and controlled by that person".

Instead of providing a national health IT infrastructure, the Government's role should be "to regulate privacy and technical standards", and allow the market to come up with products that suit both consumers and healthcare providers

"By 2012, every Australian should be able to have a personal e-health record," said NHHRC chair Christine Bennett. "The Government must legislate to ensure the privacy of a person's e-health data, while enabling secure access to the data by the person's authorised health providers."

To thwart likely objections from doctors over sharing information contained in their patients' records, the NHHRC wants the payment of public and private benefits to health and aged care services "to be dependent upon the provision of data to patients, their authorised carers and other health providers, in a format that can be integrated into a personal e-health record".

Microsoft has previously told the NHHRC it was feasible to establish an affordable, consumer-controlled e-health record nationwide within one year. Its HealthVault web-based platform has been designed to allow people to collect, store and share their own medical information with doctors and family members.

The commission's interim blueprint, released late last year, has been criticised for its failure to put information technologies at the heart of planned health sector reform.

While today's paper said the nationwide adoption of individual e-health records would return between $7-$9 billion in economic benefits from increased productivity and reduced adverse events over 10 years, the federal and state governments have baulked at providing the necessary funding.

More here:

http://www.australianit.news.com.au/story/0,25197,25409711-15306,00.html

Second we have the professional press

GPs face MBS restrictions under proposed e-health agenda

Friday, 1 May 2009

GPs who do not sign up to the Government’s e-health agenda could find their access to the MBS restricted, under radical new proposals touted by the National Health and Hospitals Reform Commission.

The new proposals – released yesterday – recommend public and private benefits for health and aged care services be tied to the provision of personal electronic health records to all patients. GPs would have until January 2013 to comply.

However, AMA e-health committee chair Dr Peter Garcia-Webb criticised the proposal, claiming it could greatly disadvantage patients.

http://www.medicalobserver.com.au/News/0%2C1734%2C4453%2C01200905.aspx

And here:

Push for e-health records by 2012

1-May-2009 adw_spacer

Doctors should lose funding if they fail to integrate referrals, discharge and patient information into a national system of e-health records, the Federal Governments main advisory group has said.

Yesterday the National Health and Hospital Reform Commission released a series of recommendations designed to kick start the development of national e-health records.

Its key message is that Federal Government should guarantee every Australian can “own and control” their own e-health record by 2012.

But as part of that process it also said the government should make funding to health providers dependent on their ability to send and receive information in a way that is compliant with the e-health record system.

That includes GPs, medical and non medical specialists, pharmacists and health and aged care providers being able to transmit key health data – including referrals, discharge information, prescriptions and synopses of diagnosis and treatments - in a format that can be “integrated into a personal electronic health record” by January 2013.

The commission said hospitals would also face loss of funding unless they were able to provide referral and discharge information under a national e-health system by 1 July 2012. And the same deadline has been suggested for pathology and diagnostic imaging providers.

More here (if access available):

http://www.australiandoctor.com.au/articles/ec/0c0607ec.asp

And finally the mainstream press health section

Push for electronic health records

Adam Cresswell, Health editor | May 01, 2009

Article from: The Australian

THE federal Government's main health reform advisory body has set a target date of 2012 by which it says every Australian should be able to have their own electronic health record.

In one of its most definitive statements, the National Health and Hospitals Reform Commission said yesterday that any electronic health record should be under the control of individual patients, instead of doctors.

It also called on the federal Government to take steps to enable health records to be introduced. These steps include introducing unique personal health identifiers - code numbers for each individual - by July next year. Medicare numbers are not suitable for this purpose because entire families can be included on one Medicare card.

More here:

http://www.theaustralian.news.com.au/story/0,25197,25411894-23289,00.html

Interestingly, in parallel we have this paper appear.

Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design

Elissa R Weitzman1,2,4, ScD, MSc; Liljana Kaci1, BA; Kenneth D Mandl1,3,4, MD, MPH

1Children’s Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Children’s Hospital Boston, Boston, MA, USA

2Division of Adolescent Medicine, Children’s Hospital Boston, Boston, MA, USA

3Division of Emergency Medicine, Children’s Hospital Boston, Boston, MA, USA

4Department of Pediatrics, Harvard Medical School, Boston, MA, USA

Corresponding Author:

Elissa R Weitzman, ScD, MSc

Children’s Hospital Informatics Program

One Autumn Street, Room 541

Boston, MA 02215

USA

Phone: +1 617 355 3538

Fax: +1 617 730 0267

Email: elissa.weitzman [at] childrens.harvard.edu

ABSTRACT

Background: Consumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft’s HealthVault, and the Dossia platform, based on Indivo.

Objective: To understand the acceptability, early impacts, policy, and design requirements of PCHRs in a community-based setting.

Methods: Observational and narrative data relating to acceptability, adoption, and use of a personally controlled health record were collected and analyzed within a formative evaluation of a PCHR demonstration. Subjects were affiliates of a managed care organization run by an urban university in the northeastern United States. Data were collected using focus groups, semi-structured individual interviews, and content review of email communications. Subjects included: n = 20 administrators, clinicians, and institutional stakeholders who participated in pre-deployment group or individual interviews; n = 52 community members who participated in usability testing and/or pre-deployment piloting; and n = 250 subjects who participated in the full demonstration of which n = 81 initiated email communications to troubleshoot problems or provide feedback. All data were formatted as narrative text and coded thematically by two independent analysts using a shared rubric of a priori defined major codes. Sub-themes were identified by analysts using an iterative inductive process. Themes were reviewed within and across research activities (ie, focus group, usability testing, email content review) and triangulated to identify patterns.

Results: Low levels of familiarity with PCHRs were found as were high expectations for capabilities of nascent systems. Perceived value for PCHRs was highest around abilities to co-locate, view, update, and share health information with providers. Expectations were lowest for opportunities to participate in research. Early adopters perceived that PCHR benefits outweighed perceived risks, including those related to inadvertent or intentional information disclosure. Barriers and facilitators at institutional, interpersonal, and individual levels were identified. Endorsement of a dynamic platform model PCHR was evidenced by preferences for embedded searching, linking, and messaging capabilities in PCHRs; by high expectations for within-system tailored communications; and by expectation of linkages between self-report and clinical data.

Conclusions: Low levels of awareness/preparedness and high expectations for PCHRs exist as a potentially problematic pairing. Educational and technical assistance for lay users and providers are critical to meet challenges related to: access to PCHRs, especially among older cohorts; workflow demands and resistance to change among providers; inadequate health and technology literacy; clarification of boundaries and responsibility for ensuring accuracy and integrity of health information across distributed data systems; and understanding confidentiality and privacy risks. Continued demonstration and evaluation of PCHRs is essential to advancing their use.

(J Med Internet Res 2009;11(2):e14)
doi:10.2196/jmir.1187

KEYWORDS

Medical records; medical records systems, computerized; personally controlled health records (PCHR); personal health records; electronic health record; human factors; research design; user-centered design; public health informatics

Full paper is here:

http://www.jmir.org/2009/2/e14/

My initial response (associated with the announcement of the plan) is found here:

http://aushealthit.blogspot.com/2009/04/important-e-health-release-from.html

With the advantage of a few days of thinking and reading around this topic I can only say that, while I am entirely happy with what I said last week I now believe I was not sufficiently condemnatory of the vast number of weaknesses contained in this proposal.

My purpose here is not to say we should in any way slow or constrain the overall development of e-Health in Australia but that we should be doing it is a balanced, co-ordinated, consultative way.

It is simply absurd to propose a national deployment of Personal Health Records without addressing a range of other critical issues.

These critical issues in the e-Health domain include governance, funding, leadership, communication, professional and provider education and consumer involvement. I believe the necessary balance was properly and consultatively achieved in the National E-Health Strategy which was developed last year and which I am deeply concerned may not receive the attention and funding it is due because of the release of this new document.

The NHHRC needs to absorb two key pieces of information is seems to be ignoring.

First it needs to recognise there is no established benefits case for PHRs (they are essentially too new for the work to have been done) so investment in this area is speculative and not evidence based at preset. (see paper cited above)

Second it must be clear that when it has been talking of EHRs it has been – to date – talking of provider maintained and used EHRs – for which there is a much longer history of use and an overwhelming benefits case – including work done by organisations as diverse as the RAND Corporation and NEHTA.

No-one, just no one, has asked to public if they want their own personal health record to which their health professionals will be financially compelled to contribute. This is a nonsense of a just staggering magnitude.

The new NHHRC document is essentially a semantic and definitional con job as it takes evidence of value and success from ‘real’ electronic health records and just assumes the same can be said about PHRs. This is just not true!

Balance and leadership is critical here and what I am seeing are a range of vested interests subverting what should be a quite simple staged strategic implementation.

The drivers are the Commonwealth wanting to minimise expenditure on e-Health but needing to be seen to doing something, NEHTA recognising the real Shared EHRs are complex and slow to implement and fundamentally require quality provider systems in which they have essentially no expertise and various health software providers seeing PHRs as something they have already done and can easily bring to our market at a very good profit. The NHHRC also does not seem to have the depth of understanding in e-Health that can really help it optimise overall health sector outcomes through the use of e-Health. If it had this expertise e-Health would not have been left to being an afterthought.

It is also important to recognise that with Internet access being nowhere near universal there is significant policy discrimination against the poor, the older and the IT illiterate who will miss out on access to PHRs.

Overall the NHHRC has two reasonable ways forward.

The first is to make it clear that the present paper is adjunctive to the already developed National E-Health Strategy and formally recommend that this strategy be funded and implemented.

The second is to develop a new balanced National E-Health Strategy and insist it be funded and implemented.

Given the NHHRC does not have the time to do the latter the first is the only way forward. I see any other outcome as deeply flawed.

In passing the NHHRC has to recognise that he medical profession is presently being battered by all sorts of regulatory changes, PIP vagueness and uncertainty, probity reviews, challenges to professional autonomy and a threat to its vital role in the health system.

This shift seems to many of them to be part of a pattern. As a result many are finding the professional practice of medicine dramatically less attractive and fulfilling.

Love or hate them the medical profession is key to any success in e-Health and alienating them will sink any progress before it even starts. This sort of jackboot compulsion to supply information for patient systems at their cost will spark a backlash the like of which I can only imagine - once they realise what is going on.

Lots of issues also remain in this NHHRC proposal such as the data quality and reliability of PHRs. Care should never be based on untrustworthy information and this proposal encourages that deeply flawed approach.

David.

3 comments:

Anonymous said...

A few questions: what impact or influence (what unintended consequences) might we encounter if medical records are 'patient controlled'? What of medico-legal issues? Duty of care? the old chestnut of "if it's not in the record it didn't happen"? How will medical misadventures be objectively reviewed, assessed and in some instances compensated? Doesn't shifting the control of the record to the (often underinformed and untrained) patient undermine the completeness, reliability or accuracy of the documentation, which various and numerous clinicians might later rely upon for deciding a treatment regime? Isn't that just plain dangerous? Doesn't the PHR proposal potentially 'shift the blame' to the patient when the medical record is 'wrong'?

Anonymous said...

Good questions Tuesday, May 05, 2009 5:47:00 AM.

One could go on and on - so many important questions need to be asked before government rushes blindly ahead on the basis of the NHHRC Supplementary Paper.

The NHHRC would have done itself and the nation a very great favour if it had resisted the temptation to appear knowledgeable and pontificate on the very complex issues of eHealth, EHRs, PEHRs and all the issues embodied therein; about which it has little or no experience.

What it should have done is give some definitive leadership. That should not have been a time consuming or onerous task. Instead it has muddied the waters and confused the already complex agenda still further.

Giving credit where it’s due the NHHRC did refer to the "National E-Health Strategy, Summary, December 2008, www.ahmac.gov.au" on 13 occasions. Indeed it went so far as to say "we believe that implementation of this particular strategy must be accelerated as a matter of urgency by giving individuals control over their electronic health record in conjunction with strong national leadership and genuine stakeholder engagement."

Then it got itself all tangled up with its discourse on the consumers' having control of their health records, and in doing so it lost sight of the starting point or it decided it was best qualified to 'reposition' the starting point. That, was a fundamental error of judgment which needs to be rectified.

All it had to do, as Dr David More so rightly says "is to make it clear that the present paper is adjunctive to the already developed National E-Health Strategy and formally recommend that this strategy be funded and implemented".

Anonymous said...

I agree wholeheartedly more with your last commentator(10.38 am). However, the question remains - will the NHHRC recommend implementation of the National eHealth Strategy or not?