Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Thursday, September 03, 2009

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.

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