It Seems the Confusion Regarding PHRs and EHRs has Spread.

The following articles have appeared recently. Since the Conservatives are very likely to win the next general election what they are saying is very important for e-health in the UK. Do read on – there is some Australian relevance as well!

Conservatives pledge to ‘halt’ LSP deals

10 Aug 2009

The Conservative party has pledged to scrap the NHS Spine and halt and re-negotiate the two main contracts with BT and Computer Sciences Corporation in order to revamp NHS IT.

The promises came as the Conservative’s endorsed the findings of an independent review of the £12.7 billion NHS National Programme for IT, which has called for the five-year old project to be radically rewritten and the local service provider contracts to be “halted and re-negotiated”.

The role of the centre should also be confined to standard setting and catalogue procurement centrally “The catalogue should encourage smaller providers to innovate and develop solutions that better meet the needs of patients and the clinicians providing their care.”

The Conservative-endorsed review says the national NHS infrastructure, including the NHS spine, should be broken up; the LSP contracts held by BT and CSC halted and rewritten; and nationally procured systems replaced by a wider range of accredited systems chosen locally.

It concludes “the National Programme must not be abandoned”, and calls for an immediate freeze and renegotiation of the NPfIT local service provider (LSP) contracts. “Subject to any applicable constraints, halt and renegotiate the Local Service Provider contracts to save further inefficiencies with regard to cost and delivery”.

The focus for planning and decision making on IT systems should instead be passed back to local NHS trusts, with centre only retaining responsibility for essential infrastructure and standards.

The Conservatives and the review reaffirm the central objective of universal adoption of electronic patient records within the NHS, but say a new locally-based approach is needed to achieve this. To achieve this they say the two current two LSP-provided clinical systems, iSoft and Cerner, must be supplemented by a wider choice of accredited systems, through a framework catalogue.

Shadow Health Minister Stephen O’Brien said “The top-down bureaucratic National Programme has been plagued by delays and cost over-runs.” He said that without sight of the BT and CSC LSP contracts it was impossible to say how they could be changed, or how much had been spent or committed, but promised “there will be savings”.

Asked about the cost of re-negotiating the LSP deals, O’Brien said he was giving the firms advanced notice of a future Conservative government’s intentions and hoped to be able to work with them. But he also acknowledged getting out of current deals was unlikely to be cost free.

On the costs of a future re-negotiation he said: At the moment you have a lot of duplication, and have a lot of people trying to buy their own local systems and go outside the national contracts.”

The review says that personal health records – such as Google Health and Microsoft HealthVault – may have a useful role to play, but are no substitute for development of detailed local electronic patient records, which should remain the focus of NHS IT strategy. O’Brien said the Conservatives will launch a public consultation to find out how much control of their records people want.

More here:

http://www.e-health-insider.com/news/5109/conservatives_pledge_to_%E2%80%98halt%E2%80%99_lsp_deals

The reports and responses are here:

Links

Independent Review of NHS and Social Care IT (1.3Mb)

Conservative party response to the independent review

However on Page 3 of the second document they say the following.

3. PERSONAL OWNERSHIP OF HEALTH RECORDS

Governments across the world are introducing IT systems that enable greater personal control of health records.

• France, Canada, the United States, Germany and Austria have all adopted IT programmes that include personal health records.

• Patients in Canada and the United States have the option of storing health information on the web. In both cases, a local record is also held by the doctor overseeing a patient’s care.

• Patients in France, Germany and Austria all hold electronic ‘smart cards’ through which they can access a record of their health information – data which is also held by the clinician in charge of their care, either on a central database or in local data stores.

We accept the Review’s recommendation that the NHS should consult with patients on how much control they want over their health records.

New technologies being developed by the private sector will enable individuals to maintain their own health records on a personal data platform, and to choose whether or not to share this information with third parties – all at little or no cost to the taxpayer.

Personal Health Records run by the private sector mean little or no cost to the taxpayer if they are procured in a fully developed form. Unlike the Government-run IT systems, which seem to be characterised by a tendency to let the taxpayer foot the bill for product design, the Conservatives would seek to purchase IT products that are ready for implementation. We would therefore save money and improve efficiency.

Greater personal control of health records can lead to significant benefits. It can empower patients, allowing them to share information with third parties if they choose to do so. Giving patients greater control of their data can also drive social and commercial innovation, and enable communities of patients to come together online and discuss their conditions and treatments.

In addition, personal control of health records can improve communications between patients and clinicians.

For example, patients can make comments on their records, adding details of additional medication being taken or other symptoms and conditions.

---- End Quote.

Yet again we have the implied suggestion that PHRs can replace provider systems. At least the review conducted by the professionals was clear that is not the case!

While on the UK I mentioned this a few days ago when discussion Shared Records.

Shared Record Professional Guidance (SRPG)

The purpose of the Shared Record Professional Guidance (SRPG) project was to develop a set of professionally led guidelines that would consider the governance, medico-legal and patient safety consequences of Shared Electronic Patient Record (SEPR) systems in primary care.

More here:

http://www.rcgp.org.uk/get_involved/informatics_group/shared_record_professional_guidance.aspx

The project report is presented in three documents:

SRPG final report (25 pages)

SRPG final reference report (140 pages)

SRPG quick reference guide (8 pages)

This discussion focuses on what is planned to be a detailed EHR which is made shareable – rather than the much simpler – but still tricky – sharing of a brief clinical summary. The most recent manifestations of the NEHTA IEHR seem to veer much towards the detailed rather than just a very limited summary. This would be a lot clearer if there was more information in the public domain!

These principles make it clear just how many issues need to be addressed to get it right. Read slowly and you will feel very tired indeed at the complexity of addressing all this! (Page 3 and 4 of the SHG) Note SEPR/sDCR stands for Shared Electronic Patient Record / Shared Detailed Clinical Record.

2. Principles for record sharing

Principle 1.

The success of SEPR/sDCR programmes should be measured alongside the operational characteristics of these programmes allowing evaluation of such systems in a wider context.

Principle 2.

Joint guidance on record sharing should be produced and maintained collaboratively by professional regulatory bodies and representative organisations to ensure a multiprofessional approach to record quality, consistency and clarity.

Principle 3.

A community using a SEPR/sDCR system should establish governance rules and processes that ensure the clear allocation of responsibility and define the rules and mechanisms for its transfer. The rules need to be clear on who has responsibility for content and for action based on the record content within and between organisations.

Principle 4.

SEPR/sDCR systems should be designed to support the governance principles outlined in Principle 3 (above).

Principle 5.

Health professionals should have a shared responsibility for maintaining and assuring data quality in SEPR/sDCR systems.

Principle 6.

Health professionals should be properly educated and trained to meet their legal, ethical and professional responsibilities for using and managing SEPR/sDCR systems. This should form part of their ongoing professional development.

Principle 7.

Semantic issues should be considered in the design and implementation of SEPR/sDCR systems so that meaning is preserved and must be sensitive to issues of language, interpretation and context.

Principle 8.

Governance arrangements should be in place to deal with errors and differences of opinion in SEPR/sDCR systems.

Principle 9.

Organisations should have the facility to update/correct erroneous information added to their DCRs from other sources, (with the original information retained in the audit trail).

Principle 10.

Content and provenance data should identify unambiguously the originator or editor of each entry in the SEPR/sDCR.

Principle 11.

SEPR/sDCR should to be able to store and present information in styles that meet the particular user’s needs.

Principle 12.

SEPR/sDCR systems should improve the quality and safety of care by facilitating communication and coordination between health professionals and informing best clinical practice.

Principle 13.

SEPR/sDCR systems should support structured communications between users (e.g. referrals).

Principle 14.

Health organisations should be able to explain to patients who will have access to their SEPR/sDCR and must make information available to patients about such disclosures.

Principle 15.

Health professionals should respect the wishes of those patients who object to particular information being shared with others providing care through a SEPR/sDCR system, except where disclosure is in the public interest or a legal requirement.

Principle 16.

There should be an organisational (or team) guardian with clinical and information governance responsibilities for that organisation’s shared and organisational DCRs, in order to assure best practice is followed.

As I said a few days ago, these are well worth the download!

David.

Why Does This Sort of Silliness Keep Happening?

The following appeared a day or so ago. It is fair to say it caused me to almost ‘choke on the Wheaties’!

Toolkit to cut hospital errors

Karen Dearne | September 01, 2009

A TOOLKIT intended to reduce medication errors in hospitals is under development for the Australian Commission on Safety and Quality in Health Care.

KPMG has been awarded a $320,000 six-month contract to produce a uniform electronic medication management system that addresses issues around prescribing by doctors, dispensing by pharmacists and administration of drugs by nurses.

Commission project manager Neville Board said the work, in conjunction with the National E-Health Transition Authority, "will optimise the safety of systems" being introduced to hospitals.

"While hospital pharmacists have been using computer systems to manage inventories and dispensing for some years, there are few examples of e-prescribing and electronic medication management to date," he said.

"This project aims to do a lot of the complex work -- developing tools to assess available systems and building up planning skills and resources -- so we can offer a robust, adaptable toolkit, rather than having each hospital start from scratch."

KPMG and Trilogy Information Systems will also design "an optimal e-prescribing screen" for users, based on the National Inpatient Medication Chart. The work is due for completion by next January.

More here:

http://www.australianit.news.com.au/story/0,24897,26007658-5013040,00.html

If I read what is said correctly the money is to be spent to ‘develop a toolkit’ to optimise the safety of medication management systems for hospitals who are introducing them.

The rationale for all this seems to be here:

Safe ePrescribing and Electronic Medication Management

There is a need for a comprehensive, best-practice standard set of safe procurement and implementation guidelines for facilities and Areas or states moving toward ePrescribing and electronic medication management (EMM). It is assumed and supported that electronic prescribing in hospitals can improve safety and quality. At the same time, there is potential to increase harm through poorly designed or implemented systems in hospitals.

It is important that tools are developed to ensure that EMM systems are implemented safely, and that their use optimises both safety and quality of care in the hospital environment. This work is a collaboration between National E-Health Transition Authority (NEHTA) and the Commission.

The Commission will be developing the following guidelines:

• User requirements and procurement guide for hospital ePrescribing and electronic medication management (EMM) systems;
• An implementation toolkit for ePrescribing and EMM in hospitals, including safe ePrescribing and EMM practice;

Consideration is also being given to the development of a standard optimal user interface which builds on the National Inpatient Medication Chart, as well as the national standard terms, abbreviations and units.

Contact:

Neville Board, Information Strategy Manager

(02) 9263 3587

Email: mail@safetyandquality.gov.au

The page is here:

http://www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/PriorityProgram-08_ePrescribing

What amazes me with this is that a consulting firm and a system developer – both with no apparent experience in the implementation of Clinical Physician Order Entry and Medication Management – including ‘closing the loop’ medication reconciliation systems is doing this work, rather than the experts from companies like Hatrix,(iSoft) and Cerner who already have years of experience in getting these systems right all over the world and who are already putting systems into operation in a number of States.

If the job was to work with current providers to optimise their implementations, this would be better done using clinical experts working with the system providers, not non clinical consultants.

I have absolutely no quibble with the need to do things properly and safely, but I thought that was what we paid the expert implementers to do, working with local clinical staff. I really wonder if we have the right parties in the room to optimise our outcomes for all.

I wonder what the evidence for electronic medication management being done badly is that has prompted this work. It is not clear to me, from the ACSQHC site, although I am aware there is old literature suggesting some early approaches were less than ideal. Readers of the blog will be aware that a publication developed by this same organisation was very badly flawed in an evidentiary and peer review sense.

See here – first topic.

http://aushealthit.blogspot.com/2009/08/useful-and-interesting-health-it-news_23.html

On this topic we actually have a National Prescribing Service which has a deep interest and understanding of this area (they have done great work with GP prescribing systems). I wonder why they are not working with the ACSQHC to establish what, if anything, is needed, and how it might be best delivered?

One also wonders where Standards Australia and IT-014-6-4 fit? There are a few experts there too!

Prescription Messaging

E.scripts will touch more Australians, more often, than any other clinical application

Replacing the simple printing of prescriptions with E.scripts involves the formulation of a prescription, supported by a relevant Clinical Decision Support System (CDS), and secure transmission of the prescription to the pharmacist, who then dispenses to the patient using associated software for data collection and reporting mechanisms.

More here:

http://www.e-health.standards.org.au/cat.asp?catid=46

Also who knows if there is any interaction eRX and MediSecure? Given it is a hospital based initiative probably not I would guess.

Overall, yet again lack for coherent governance for e-Health in Australia is having all sorts of miscellaneous projects thrown up without the right levels of co-ordination in my view. At the very least I would hope the project has a steering committee which has the NPS, relevant vendors, some appropriate expert clinicians and NEHTA on it to ensure time and money are not wasted.

Note that NEHTA does have a work program on e-Medication. See here:

http://www.nehta.gov.au/e-communications-in-practice/emedication-management

But there is not a new document published in the area on their website since 22/08/2006. Clearly this is an area of very high priority!

Without all these parties close to what is being done an impractical fiasco would seem to be a real risk.

David.

Woolly Thinking and A Lack of Clarity on E-Health Marr National Primary Care Strategy.

Another day and we have another of the Rudd Government’s trio of papers on Health Reform.

Building a 21st Century Primary Health Care System

The draft of Australia’s first National Primary Health Care Strategy has been released by the Australian Government.

31 August 2009

The Rudd Government today released the draft of Australia’s first National Primary Health Care Strategy.

The Primary Care Strategy focuses on what Government can do to improve the frontline health care that Australians depend on, including the care delivered by GPs and other frontline health professionals like physiotherapists, psychologists and pharmacists.

Australia’s health system is facing a number of key challenges including:

• an ageing population
• rising rates of chronic disease
• the need to address the health needs of rural, remote and Indigenous communities.

The Strategy has a strong focus on meeting these key challenges of the future.

The strategy reinforces and builds on the work of the National Health and Hospital Reform Commission - providing the next level of detail that sits below the Commission’s broad priorities.

It provides us with a draft roadmap to guide future policy and practice in primary care in Australia, ensuring we are building a system that cares for the most vulnerable in our community and a system that is connected with the patient at the centre.

The Government is determined to get health reform right.

Stakeholder input has been crucial in developing the draft strategy, with more than 260 submissions received in response to the discussion paper.

Following the recent release of the National Health and Hospitals Reform Commission’s landmark report the Government has begun a national conversation on health reform with the Australian people.

Today’s consultation at Sir Charles Gairdner Hospital in Perth is the tenth consultation held by the Government. Over 18,000 hits have been received on the Government’s yourhealth.gov.au website – around 600 per day since the site was launched.

The three most popular topics explored on the site to date are hospitals and emergency departments, e-health, and primary care/general practice.

The release of the draft strategy today will further inform that discussion.

Development of the draft strategy has been assisted by an External Reference Group (ERG) with membership comprising primary health care experts from around Australia, including a pharmacist, a midwife, a physiotherapist, a psychologist, a general practice nurse, a consumer representative, primary care academics and strong representation from general practice, including those with Indigenous, rural and remote experience.

The Government thanks Dr Tony Hobbs, who chaired the ERG, and all members of the group who gave so generously of their time, experience and knowledge to inform the development of the draft strategy and its supporting report.

The release is found here:

http://www.health.gov.au/internet/ministers/publishing.nsf/Content/nr090831

There are two documents that were made available yesterday.

First we have:

Building a 21st Century Primary Health Care System: A Draft of Australia's First National Primary Health Care Strategy

Found here:

http://www.yourhealth.gov.au/internet/yourhealth/publishing.nsf/Content/nphc-draft-report-toc

The actual report is here:

http://www.yourhealth.gov.au/internet/yourhealth/publishing.nsf/Content/nphc-draft-report-toc/$FILE/NPHC-Draft.pdf

Second we have:

Primary Health Care Reform in Australia - Report to Support Australia’s First National Primary Health Care Strategy

This is found here:

http://www.yourhealth.gov.au/internet/yourhealth/publishing.nsf/Content/nphc-draftreportsupp-toc

The download is here:

http://www.yourhealth.gov.au/internet/yourhealth/publishing.nsf/Content/nphc-draftreportsupp-toc/$FILE/NPHC-supp.pdf

In the draft strategy we find the following under the Strategy Building Blocks:

2. Information and technology, including eHealth

eHealth and other technologies are key enablers for change in primary health care. eHealth will allow information to be available when and where a patient needs care, can drive communication and partnerships between providers and with patients, will reduce the risks of adverse events for consumers and, with it, reduce costs and improve patient outcomes.

Electronic information exchange, particularly individual electronic health records (IEHRs), are a strong support for multi-disciplinary primary health care collaboration and enable efficient exchange of information between the primary health care, community and specialist health care settings.

This would be a significant improvement on the current situation for clinicians and consumers, particularly those with complex or chronic health conditions and those who need to move across the service system – from a general practice to a specialist service provider or allied health professional to a hospital and back.

As Australians increasingly access online information and services through mobile and e-technologies, they expect that the health sector will operate as does other sectors, affording them similar access, efficiencies and ease of information and connection.

Consumers expect to be involved and active in their health care management, and should have access to tools to enable self-care in a structured and informed way, and assist them to navigate the health system maze effectively.

Released in December 2008, the National E-Health Strategy provides an appropriate basis to guide the development of eHealth and proposes the incremental adoption of IEHRs.

The National Health Call Centre Network, a Council of Australian Governments (COAG) funded initiative, provides a good infrastructure base for other innovative uses of technology, such as proactive telephone-based self-management support of patients and online health information.

What will be different?

Patients not having to repeat their medical history to each new provider. Patients having information to help them to manage their own condition. Health care providers able to set up virtual, integrated care teams, and having accurate and timely information to support best treatment. Potential to outreach to hard to service communities with more innovative and effi cient use of health workforce. Improved quality and safety.

In the Supplementary report we have information on e-Health in a major section, as well as comments it is important in pretty much anything.

This section covers pages 90 to 100 and is what I am much less than happy with.

Essentially these 10 pages say that e-Health is a good thing, the public want it and so we need to get on with the National E-Health Strategy and implement the notorious NEHTA Individual Electronic Health Record (IEHR)

Reading the 10 pages one gets the distinct impression the authors of this section have absolutely no idea just what the implications of what they are suggesting are, but that this is the latest buzzword and we think we should have one.

What they should have been saying is that what General Practice needs is broadband, connectivity, powerful, clinically useful provider systems for those in GP to use and standardised messaging capabilities to facilitate information flows between practices and within practices and with the various service providers and hospitals.

We also then need to exploit these systems to provide all the secondary benefits of information enabled practice.

If we can get there maybe then we can – as the National Strategy suggests - dip our toes carefully into clinical information sharing.

If you want an idea of just what a minefield this is download and read these documents from here:

Shared Record Professional Guidance (SRPG)

The purpose of the Shared Record Professional Guidance (SRPG) project was to develop a set of professionally led guidelines that would consider the governance, medico-legal and patient safety consequences of Shared Electronic Patient Record (SEPR) systems in primary care.

More here:

http://www.rcgp.org.uk/get_involved/informatics_group/shared_record_professional_guidance.aspx

The project report is presented in three documents:

SRPG final report (25 pages)

SRPG final reference report (140 pages)

SRPG quick reference guide (8 pages)

I am sure you will conclude, as I have, we have a zillion miles to go to get to first base before we go down the IEHR path. The issues and complexity make the problems around the IHI seem like a cakewalk!

Sorry but they really should have come up with a push for getting the basics right and have not over-reached as I think they have with this.

David.

The Privacy Commissioner Administers a Backhander to DoHA and NEHTA.

A few days ago the Commonwealth Privacy Commissioner released her submission to the Department of Health request for submissions on the legislative proposals for NEHTA’s Individual Health Identifiers.

The basic information on the consultation process can be found here:

http://aushealthit.blogspot.com/2009/07/having-worked-on-it-for-years-doha-now.html

The direct link is here to the DoHA page with a link to the request for submission:

http://www.health.gov.au/internet/main/publishing.nsf/Content/pacd-ehealth-consultation

Submissions closed on August 14, 2009.

Commentary on what was said by the Privacy Commissioner is found below.

No escape from identity scheme for Medicare

Karen Dearne | August 25, 2009

AUSTRALIANS may not be able to opt out of the planned national healthcare identity scheme despite assurances that those who do will still have access to treatment under Medicare.

Federal Privacy Commissioner Karen Curtis says "it is not clear how an individual will be able to exercise that option" under proposals on the national health ministers' agenda.

"We understand that any (authorised) healthcare provider or organisation will be able to obtain an individual's identifier from the (Medicare-operated) service without the consent of the person concerned," she said. "Potentially this could occur after treatment, when the person is no longer present."

Ms Curtis has questioned plans for a legal quick-fix that would allow the start of the Medicare-based identifier regime next year, saying the proposed service "is of sufficient scale and sensitivity to warrant specific new legislation to ensure consistency of protections and penalties nationwide".

Much more here:

http://www.australianit.news.com.au/story/0,24897,25975395-15319,00.html

The submission from the Privacy Commissioner is found here:

Healthcare identifiers and privacy: Discussion paper on proposals for legislative support; Submission to the Australian Health Ministers' Conference (August 2009)

.pdf (398.55 KB)

The key recommendations are summarised on the second page:

Key recommendations

1. The Office welcomes the opportunity to provide a submission on the Healthcare identifiers and privacy: Discussion paper on proposals for legislative support.

Part A

2. In relation to Part A of the discussion paper, dealing with the Health Identifier (HI) Service and the issuing and use of health identifiers, the Office has made a number of key recommendations:

3. The enabling legislation for the HI Service should cover:

i. provisions setting out the clearly defined healthcare-related purposes for which a provider can access the HI service to obtain an individual’s IHI and establishing that the IHI can only be accessed where the provider has a healthcare relationship with the individual

ii. prohibitions on use or disclosure of the IHI or associated personal information outside of the healthcare sector across all jurisdictions

iii. provisions which underpin the legislative status of participation agreements or provision for mandatory guidelines (see A.5.2 )

iv. requirements relating to independent auditing and mandatory reporting of breaches of HI Service policies

v. sanctions and complaint mechanisms (including a right of recourse to a relevant statutory officer like the Privacy Commissioner for the private sector and Australian Government agencies where appropriate), and

vi. provisions to ensure that any future expansion of uses of the HI Service is subject to a Privacy Impact Assessment and parliamentary scrutiny.

4. Obligations additional to those contained in the privacy principles should be established through a second-tier legislative instrument such as mandatory guidelines, and cover, amongst other things secondary uses and data security.

5. Clarification may be required in relation to whether administrative staff of healthcare providers will be able to access information in the IHI and Healthcare Provider Individual Identifier (HPI-I) databases, and if so how their use of those databases will be audited.

6. All jurisdictions provide for a common set of legislated obligations in relation to the collection and handling of health identifiers prior to the introduction of a wider common health privacy framework.

---- End Extract.

What I found quite interesting was the number of issues the Commissioner felt clarification was required.

28. The discussion paper states that use of the IHI will not be a requirement to receive health services.12 However, it is not clear how an individual will be able to exercise the option not to use their IHI. The Office understands that any provider with a Healthcare Provider Individual Identifier (HPI-I) and/or a Health Provider Organisation Identifier (HPI-O) will be able to obtain an individual’s IHI from the HI Service without the consent of the individual to whom the IHI has been assigned (if they have the required individual’s demographic information). Potentially, this could occur after treatment (when the individual is no longer present).

“31. The Office would welcome clarification of whether there will be any constraints on the circumstances in which a provider (who has the minimum demographic information required to search the database) will be able to access an individual’s IHI. For example, will a provider be able to access an individual’s IHI in situations where they do not have an active healthcare relationship with the individual and have not seen the person for a number of years?”

32. The Office is also aware that many individuals may be particularly concerned about specific health information that they consider more highly sensitive and want to have tighter control over the use and disclosure of that information. The Office would welcome clarification on what options the individual may have in relation to how they can exercise control over whether or not their IHI is connected to that specific information.

Participation Agreements in IHI.

44. The discussion paper suggests that additional obligations might be set out in participation agreements.22 The Office is unsure about the mechanism by which the status of such agreements would be underpinned by law, and would welcome clarification on this matter.

49. In relation to the remaining principles (openness, access and correction, and trans-border data flows), the Office agrees in principle that these principles should be regulated through existing health privacy laws and administrative arrangements. However, as discussed in sections A.6.2.3 and A.7, currently there are no specific legislative privacy protections for health information in the public sectors of two states (Western Australian and South Australia). The Office would welcome clarification of how this gap in privacy protections will be addressed.

60. The Office supports the intent of proposal 6, that is, that the HI Service Operator will disclose information held in the Service only to authorised users; and that the term “authorised user‟ will be defined in the legislation. 29 The Office would welcome clarification of the scope of “authorised users”, particularly in relation to whether administrative staff of healthcare service providers will be able to search for an IHI or HPI-I (see A.5.2.6). It is important that the auditing process to determine who has actually accessed the service can adequately identify the actual individual who has performed the search. It is highly unlikely that a provider themselves will undertake the administrative work associated with accessing the HI Service, but rather that their administrative staff will be tasked with that responsibility.

74. The Office has previously expressed concern that the inability to specifically identify individual non-health care providers (such as administrative staff) may reduce the value of system logs and auditing as an oversight mechanism. The Office would welcome clarification of how this issue will be addressed.39

A.5.2.10 Anonymity

79. The paper states that the introduction of IHIs will not affect the ability of individuals to conduct health-related transactions with organisations and agencies anonymously where this is lawful and practical. 41 Although it appears from the statements in the discussion paper that it is theoretically true that individuals can choose to interact anonymously in a healthcare setting (by not using their IHI), in the Office’s view, this option may not be practicable for individuals, particularly once the identifier is linked to an individual’s health information by a provider.

80. The paper indicates that vulnerable individuals (such as victims of domestic violence) will be able to request that a pseudonym is used in conjunction with their IHI. In general, the Office supports the policy intent of providing consumers the option of using a pseudonym.

81. However, the Office is not entirely clear as to how the allocation and use of pseudonyms will work in practice. The Office would welcome clarification on this matter including:

- is the use of a pseudonym intended to protect an individual’s identity from being known by a health practitioner and/or by staff of the HI Service Operator?

- whether this feature will be available to any person enrolled in the HI Service, and if not, what criteria would determine entitlement?

- what process would individuals have to complete in order to use this feature?

---- End of Extracts.

What is being said here, as noted in the report, are a number of crucial issues, which when thought about, may prove very difficult to manage.

First it is assumed that access to the IHI will be auditable down to the level of the individual to prevent unauthorised access. If access to the service is extended to provider staff (categories not defined) then all these staff, as well as all providers, will need secure robust ID as provided by proposed National Authentication Service for Health (NASH). Given one can be sure that providers themselves are not going to be looking up and checking IHI’s we have just added a huge number of additional individuals who will require IHI tokens – or admitted the IHI access will not be properly auditable.

Second it is obvious that NEHTA and DoHA have not worked out how to prevent providers using the IHI once they have once obtained it, even though an individual’s circumstances may have changed making it important links not be made. Given everyone is to allocated an IHI it seems no one has really worked out how to ‘un-allocate’ an IHI, even when requested to do so. (The point numbered 28 puts this issue very clearly I must say!)

Third it is clear the Privacy Commissioner is concerned that jurisdictional legislation is lacking in WA and SA and that this really means a Federal Act with overriding authority before any of this can come into operation.

As the Office says “ Given the lack of uniform privacy regulation it is important that national projects involving personal information or potentially sensitive information of all Australians, such as the HI Service, have dedicated, project-specific legislation ensuring that consistent privacy protections apply regardless of jurisdiction.” (Point 35).

Last it is clear the Office believes there need to be very good reasons why Privacy Impact Assessments are not made public – with some possible excisions for security – after they have been completed and appropriate modifications made.

As the Office makes clear here:

“36. As the Privacy Act is principle-based and technology neutral, on occasion additional privacy protections are warranted and necessary to regulate large-scale initiatives that involve the handling of personal information in new ways, such as with the Tax File Number, credit reporting information and MBS and PBS claims information.16 The Office believes that the HI Service is one of these comparatively infrequent national initiatives requiring specific additional privacy regulation.

37. This is consistent with the ALRC‟s view that legislation relating to shared electronic health systems „should deal with those issues that fall outside existing privacy regulation and provide more stringent rules where necessary”

And here:

“11. While other large databases exist in Australia, such as those maintained by Medicare Australia and by the Australian Taxation Office, a very large number of users will interact with this repository whose access thus needs to be carefully handled with adequate legislative protections to minimise any potential for misuse.”

This project is very large, many are going to have access and individual’s details need to be very well protected. Reading this submission I do not believe the Privacy Commissioner is in any way comfortable yet that this is the case.

I think there really needs to be an exposure draft of the actual Federal Legislation and a further period of consultation with the public before we move forward.

David.

Useful and Interesting Health IT News from the Last Week – 30/08/2009.

The Australian E-Health Press provided a good serve this week. It included these:

First we have:

GPs send clear message on reforms

Andrew Bracey - Friday, 28 August 2009

PROPOSALS to drastically overhaul primary healthcare services will not translate to better patient health outcomes, Australian GPs have warned.

A new MO poll has revealed just how dim a view GPs take of the specific reforms proposed by the National Health and Hospitals Reform Commission (NHHRC).

And expanded MBS and PBS rights for nurse practitioners and midwives are causing the most frustration.

Nearly all the 152 GPs surveyed said they believed the measure would not result in better patient health, and of a list of six controversial NHHRC reforms, more than half said it was the one move they most wanted scrapped.

Eighty per cent of GPs doubt the value of comprehensive primary healthcare centres, which have been touted as the vehicle to promote collaborative care. Seventy per cent rejected the idea of voluntary patient enrolment.

.....

Reforms GPs do not believe will improve patient health

Expanded prescribing and referral rights for nurse practitioners and allied health: 93%

Comprehensive Primary Health Care Centres: 80%

National Access Targets: 75%

Voluntary patient enrolment: 70%

Pay for performance systems: 70%

Person-controlled e-health records: 60%

For more details, visit medicalobserver.com.au/nhhrc

More here:

http://www.medicalobserver.com.au/News/0,1734,5156,28200908.aspx

Important stuff. Note the scepticism on the Personal EHRs.

Second we have:

Speed up e-health, Government urged

24 August 2009 | by Simone Roberts

Pharmacists have repeated calls for an accelerated timetable for the implementation of a national e-health system following comments by the Minister for Health and Ageing, Nicola Roxon, last week.

Ms Roxon told the Health-e-Nation conference in Canberra that the Federal Government was determined to build a connected, secure and efficient health system.

"We are building an e-health system now, because a future without it is unthinkable," she said.

"It is frustrating that in a sector where technology and research drive continual innovation in patient care, paper is still king. After a decade of doing our banking – and almost everything else – online, we're still carrying our x-rays under our arm, a script to the pharmacy, and the hospital can't send a discharge summary to the family GP."

The Pharmaceutical Society of Australia welcomed Ms Roxon's comments but said the Government needed to move quicker.

"The National E-Health Strategy has pointed to a 10-year implementation phase for the introduction of e-health in Australia which the PSA believes is just far too long and has the potential to endanger patient care," PSA president Warwick Plunkett said.

"We have to speed the process up so that reforms such as electronic prescriptions and electronic health records are available as soon as possible for the wellbeing of Australian consumers.

"There is little doubt that e-health initiatives will make our health-care system safer and more efficient and there is demonstrable proof that the technology is efficient and secure."

More here:

http://www.pharmacynews.com.au/article/speed-up-e-health-government-urged/495443.aspx

We also had this appear last week

Push to fast-track online medical records

Tuesday, 25 August 2009 | The Australian Financial Review | Julian Bajkowski and Paul Smith

Federal and state health departments want the system for electronic health records to begin by the end of the year.

More here (AFR Electronic Subscription Required – Newspaper subscription does not help!):

http://www.afr.com/home/login.aspx?EDP://20090825000031485143&section=news

This second article is simply a puff marketing piece for an AFR conference that was to be conducted the next day. However both this and the previous article put me in the situation of agreeing with NEHTA. To actually get anywhere is going to have blood, sweat and tears and TIME. We have wasted almost a decade so far and now we do have some buzz around the topic – what we don’t have is leadership, real plans and funding so nothing is really going to happen until these gaps are addressed.

Third we have:

iSoft trims workforce

Karen Dearne | August 28, 2009

GLOBAL restructuring by iSoft will lead to job cuts in service delivery in some regions, including Australia and New Zealand, despite the company posting a 137 per cent rise in net profit to $34.7 million last week.

iSoft executive chairman Gary Cohen says a possible 70-100 IT positions may be lost in Britain - or around 10 per cent of the British workforce - but the overall impact would be offset by plans to add up to 50 new sales and marketing people to drive business growth.

According to Britain's E-Health-Insider, iSoft plans to reduce its frontline staff headcount from 193 to 131 through redundancies, and merge the support and technical teams into a single unit.

But Mr Cohen told The Australian that the restructure was "not about cost-cutting".

"This is about tailoring our operations to changed market dynamics, particularly in the UK where the old business was very focused on servicing the National Health Service's IT reform program," he said.

"While we're still working alongside CSC on those contracts, we're moving into a growth mode at the same time and for that the organisation requires a different set of skills.

"So this is about growing our businesses. We're currently a company with revenues of $600 million, and we want to more than double our size in the next three to four years."

Mr Cohen said a process of "bottom-up consultation" on corporate culture change and upskilling has just begun in the Australian and New Zealand operations, as well as in its Malaysian, Middle Eastern and Indian offices.

More here:

http://www.australianit.news.com.au/story/0,24897,25992823-15306,00.html

iSoft seems to have hit the media this week in all sorts of ways. This particular news item is a bit of a worry as one would be a little concerning if marketing is focussed on in place of product development and support. For success and growth I would suggest you need both – so care with morale and balance of workforce is certainly important.

We also have some press releases which discuss the business future and iSoft’s role in those controversial super clinics.

See here:

http://www.abnnewswire.net/press/en/61326/iSOFT_Group_Limited_ASX:ISF_Interview_With_CEO_Mr_Gary_Cohen_On_Sustainable_Growth.html

iSOFT Group Limited (ASX:ISF) Interview With CEO Mr Gary Cohen On Sustainable Growth

And here:

http://abnnewswire.net/press/en/61324/Balance_Healthcare_Entrusts_iSOFT_Group_Limited_ASX:ISF_With_GP_Super_Clinic_Solution.html

Balance! Healthcare Entrusts iSOFT Group Limited (ASX:ISF) With GP Super Clinic Solution

After the good results I think it is important the knuckle down and continue the consolidation that has thus far gone pretty well. It would be good, for instance, to see a director or senior executive appointed with an established reputation in the field of health informatics as well as a little more frontline healthcare expertise at the executive level. (Usual disclaimer about having a few iSoft shares)

Fourth we have:

Nursing home wires up

Jennifer Foreshew | August 25, 2009

AGED-CARE provider PresCare investigated a range of electronic aids for residents at its newest Queensland site.

After trialling the use of wireless radio-frequency identification chips at several of its complexes, PresCare built a $30 million flagship facility at Carina, in Brisbane, offering state-of-the-art technology services.

Known as Vela, the Carina site, which will soon have its official opening, began taking residents in March and now has 54 occupants. It is expected to be fully occupied by Christmas.

Vela offers video-on-demand, Foxtel, free-to-air TV and internet protocol phones and radio in residents' rooms. The site has 154 beds, with $5.5m invested in technology alone.

PresCare technology director and chief financial officer Greg Skelton said the focus of the facility was improving safety and the in-room experience for residents.

"We were finding that a lot of our residents were having falls and they could not get to a fixed point, so they were often stranded calling out for help," Mr Skelton said.

"We put this RFID solution together so that we can actually find the residents within a 3m proximity of wherever they are."

The technology, designed and installed by Queensland communications company SureCom, integrates enterprise location tracking from AeroScout, nurse call, camera surveillance, building automation, voice over internet protocol phones and internet protocol camera security, plus people and asset tracking.

Residents and key staff wear easy-to-use wristbands or necklaces, which are monitored through a series of sensor points throughout the complex. Residents push a personal alert button for help. Staff can locate someone quickly, as in the case of a resident with dementia leaving defined boundaries.

More here:

http://www.australianit.news.com.au/story/0,24897,25974717-24169,00.html

Interesting to see such a focus on using technology to make life in nursing homes more interesting and safer.

Fifth we have:

Taxpayers may need to subsidise Tassie broadband

Matthew Denholm | August 26, 2009

THE objectives of the new Tasmanian National Broadband Network Company include delivering "affordable" broadband services and setting prices, prompting claims services may be subsidised.

Coalition government scrutiny spokesman Guy Barnett said yesterday the objectives, contained in the company's constitution, conflicted with the Rudd government's promise that services would be "commercially viable".

Senator Barnett said the company's constitution left wide open the prospect of taxpayers subsidising the provision of broadband services in Tasmania.

"Clearly, there is a concern because this directly conflicts with the government's commitment to commercial viability," Senator Barnett said. "There will be other services competing -- there are already services in Tasmania offering broadband services for as low as $30 a month."

Tasmanians have comparatively low rates of household income, raising concern about the take-up of top-end broadband services, he said. "Take-up rate projections of 20 per cent suggest it is going to require subsidies from the government to make it commercially viable," Senator Barnett said.

Full article here:

http://www.australianit.news.com.au/story/0,24897,25983558-15306,00.html

Oh dear! I guess this sort of commentary will continue until such time until some decent economic and business cases are developed and made public.

Sixth we have:

Livewire Launches Siblings Community To Support Brothers & Sisters Of Young People Living With a Serious Illness, Chronic Health Condition or Disability

Livewire, a wholly owned subsidiary of the Starlight Children’s Foundation, today launched Livewire Siblings, a new online community, where young people aged over 10 and under 21, who have a brother or sister living with a serious illness, chronic health condition or disability can support and connect with one another.

Livewire Siblings (http://siblings.livewire.org.au) is a free, safe and supportive community where young people can meet and chat online with other siblings who understand what they are going through. The site allows them to share experiences as well as gain skills and knowledge to help them feel more in control of their situation.

Currently, there are approximately 585,000¹ siblings, aged over 10 and under 21, of people living with a serious illness, chronic health condition or disability in Australia. These young people often face unique teenage challenges, and suffer a heavy emotional burden – experiencing feelings of isolation from the rest of their family and their peers; as well as guilt, confusion, anger, jealousy.

Many siblings are as emotionally vulnerable as their brother or sister as they deal with feelings of loss, anger and sadness, and come to terms with the consequences of their family’s situation. What’s more, they often receive less parental attention than their ill siblings and take on increased household responsibilities as they help their parents cope with looking after their sick brother or sister.

Prominent child and adolescent psychologist, Dr Michael Carr-Gregg, says “The sibling relationship is the single most important relationship that a chronically ill young person will have - in terms of its duration and intensity – and the psychological impact on the sibling can be as significant, if not more, than the psychological impact on the patient.

“Up until very recently, siblings needs have been overlooked and ignored, and I commend Livewire for recognising the importance of this formerly invisible group,” he concluded.

As part of Livewire Siblings, young people can chat online with other siblings, create blogs, read content and information created just for them, check out the latest music and games, post in forums and have their say!

“The launch of Livewire Siblings, signifies the next exciting step in Livewire’s goal to connect and support young Australians, aged over 10 and under 21, living with a serious illness, chronic health condition, and their families. Too often, the needs of siblings are forgotten in the wake of their brother or sister’s illness, yet there is an overwhelming need to connect and befriend others with similar experiences who understand their situation and can empathise,” says Omar Khalifa, Managing Director, Livewire.

“Livewire aims to fulfill their need to connect with others, providing a forum for self expression, and enabling them to work through the healing process by discussing issues, concerns, troubles and experiences,” he added.

Unlike other social networks, Livewire Siblings is a secure, moderated community tailored to the needs of its members. Livewire Siblings chat hosts and moderators are trained in adolescent health, and are online seven days a week to ensure that Livewire remains a supportive and fun place to be. Livewire works closely with the Australian Federal Police to help ensure all members of Livewire remain safe while engaging with the community.

This project is supported by funding from the Australian Government under the Clever Networks program, Starlight and major partners. This funding has enabled Livewire to develop a long lasting, sustainable program that will connect, support and empower its members.

Livewire aims to connect 20,000 young people, siblings and parents by the end of 2009, and has engaged with over 80 other Not-for-Profit organisations to create a truly sector-wide capability. Livewire has already begun to work with Ability First, Diabetes Australia and Cystic Fibrosis to provide access to Livewire to its eligible members.

Any young Australian aged over 10 and under 21, who has a sibling currently living with a serious illness, chronic health condition or disability who wishes to join Livewire Siblings, or find out more information should visit www.livewire.org.au or contact member.services@livewire.org.au.

Contact link above:

Certainly this seems to be something to be aware of for those this service can help.

Seventh we have:

Guidelines fall short in real-world medicine

Kathryn Eccles - Friday, 28 August 2009

MANY clinical guidelines are not useful in daily medical practice, and are often difficult to apply in a general practice setting, a Dutch study has confirmed.

Researchers held a series of focus groups with 30 GPs, who analysed 56 key recommendations from 12 Dutch national guidelines.

Guidelines the Dutch GPs found particularly problematic included those covering asthma among children, rhinosinusitis, transient ischaemic attack, thyroid disorders and sexually transmitted diseases.

They considered that 57% of the recommendations were not applicable, particularly to patients such as those with comorbidities.

“Evidence-based guidelines focus on patients with single diseases and often exclude complex patients, which limits the applicability in practice,” the authors said.

“GPs often disagreed with recommendations because they argued the underlying evidence provided was lacking or felt that it was not clear why they should apply them,” they said.

“In addition, they perceived some recommendations not being applicable due to heterogeneity of populations.”

In Australia, the NHMRC is developing a new Internet clinical guidelines portal in an effort to address similar concerns identified in the Dutch study.

The new site is due to launch before the end of 2009, and will rationalise guideline access, according to an NHMRC spokeswoman.

.....

Common barriers

• Didn’t agree with recommendation due to lack of applicability or evidence
• Environmental factors, e.g. organisational constraints
• Lack of knowledge regarding guideline recommendations
• Unclear or ambiguous guideline recommendations.

Implementation Science 2009;4:54

More here (registration required):

http://www.medicalobserver.com.au/News/0,1734,5166,28200908.aspx

This is important material that needs to be considered as we implement decision support portals.

Lastly the slightly more technical article for the week:

Five slick search engines you should know about

Google, Yahoo and Bing get the press but Exalead, Scour, Hunch , Scirus and Indeed fill a void

John Fontana (Network World) 02 July, 2009 12:03

Tags: search engines, scour, scirus, indeed, hunch, exalead

With Microsoft's recent addition of Bing to the search landscape, the spotlight is again shining on who has the best engine for finding anything and everything on the Internet. The debate over who has the best search likely will go on into eternity with a focus on the big three: Google,Yahoo and Microsoft. But there are countless other search engines out there focused on zeroing users in on the data they want or need. Here is a look at five that are offering some slick service.

Exalead

The University of California Berkeley Library recommends a second opinion when searching the Internet, and Exalead is one of its top recommendations.

The search engine features a number of advanced options including phonetic search for those who are sometimes spelling challenged. Spell a word like it sounds and results will include words that sound like what was typed into the search field.There is also a proximity search feature with a "Near" operator that finds documents where the query terms are within 16 words of each other, and a "Next" operator where search terms are next to each other. Other options include searching in a specific language only, after or before a certain date, and a prefix search that looks for the beginning letters of a word.In the results, users see thumbnail pictures of Web pages, which can be pulled up and previewed without leaving the site.In addition, Exalead has enterprise search products available (desktop, network). Its Cloudview platform support 300 formats, including structured data (RDBMS, ERP, Lotus Notes, directories) and unstructured content (e-mail messages, PDFs, Office documents, Web pages).

More here:

http://www.computerworld.com.au/article/309503/five_slick_search_engines_should_know_about

Four others are listed in the article – one particularly focussed on matters scientific. Worth a few book marks of these are areas of interest.

More next week.

David.