Informaticopia

Thursday, November 30, 2006

Wells report on NHSU - IC Decision

The Information Commissioner has just released a "Decision notice" (Ref: FS50070878) relating to my request to the Department of Health to disclose the report by Sir William Wells into the NHS university (NHSU) which will appear on the Decision Notices section of their web site soon.

The creation of the NHSu was a 2001 Labour Manifesto commitment.

The Commissioner has ruled that under section 1(1) and 10 of the Freedom of Information Act:

1. The Department has not complied with its' obligations under section 1(1) of the Act in that it failed to communicate to the complainant information to which he was entitled on the basis that it is exempt from disclosure under sections 33, 35(1)(a), 40(2) and 41 of the Act.

In view of this he requires that:

The Department shall, within 35 calender days from the date of the notice (27th Nov 2006) disclose the information requested in accordance with its duty under section 1(1) of the Act.

I will not reproduce the full decision notice here - it runs to 15 pages of legal jargon and will appear on their web site soon, but I do want to give a few significant highlights.

I believe this is currently the longest running complaint.
I originally contacted my MP in Oct 2004
I sent my initial letter to the DoH on 1st Jan 2005 & they rejected my request
I appealed and they again refused (27th April 2005)

I first wrote to the Information Commissioner on 8th April 2005 and there have been various communications since.

I believe this is the first test of section 33(1) of the act which relates to audit functions of statutory bodies, and the commissioner has agreed with me that this should be disclosed to the public. It is not yet clear how much the NHSU cost but estimates of £50-£60 million pounds of taxpayers money do not seem fanciful. Maybe when we see the full report this will become clear.

During the course of the commissioners investigations the department claimed that in addition to section 33 of the act other sections applied eg 35(1) (formulation of government policy) for the entire report and sections 40(2) (personal information) and 41 (information provided in confidence) for parts of the report.

Although the commissioner accepted that some of the sections were relevant to the report in all cases he said that the public interest in disclosure was greater than the public interest in maintaining the exemption.

If the department disagrees with the Information Commissioners report they have 28 days to appeal - I hope they do not choose to exercise this right, as this has gone on long enough - however I am worried that some government lawyers will see this ruling as setting precedents which may be applied to other government departments and processes and will not be as open as I would like them to be.

I look forward to seeing the Wells report on the Department of Health Web Site as I hope there are many lessons we can learn for the future.

I still support the NHS and many of the declared aims of the NHSu although I have some doubts about the way in which it was implemented.

I will comment again here when I finally see details of the report.

I would like to say that although it has been a long wait I recognise that the Information Commissioner has received a massive number of complaints and I would like to compliment and thank the particular "Complaints Team Leader - Central Government" who has dealt with this complaint throughout in a professional and courteous way.

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Friday, November 24, 2006

eBrochan report - part 3

After lunch, Kirsty MacLeod, eHealth consultant with the Scottish Executive, talked about the Scottish Emergency Care Summary (ECS) Programme. Three evaluations have been done of ECS, following the original pilot with two NHS Boards and two Out of Hours (OOH) services, in relation to links to NHS24, and with A&E at two hospitals. ECS is accessed via web browser, and one of the main problems was the need for new log-in as opposed to it being integrated with other systems. ECS is now being integrated with the OOH systems, and work is ongoing to integrate it with NHS24 and Scottish Ambulance Service systems.

The main afternoon session featured four speakers. Derek Hoy and Ian McNicol, from Glasgow Caledonian University, kicked off the session with a talk titled 'Clinical templates: how to make babies'. Ian begain by reiterating the need for standards in order to get interoperability between computer systems. Traditionally, people see terminologies as providing the answers; but these are essentially labels, and are static; these are models of real world entities and do not model clinical processes, and so terminologies are not enough and do not provide sufficient context for clinical records. Clinical forms are the beginning of attempts to deal with the issues; these are made up of 'clinical fragments' (small chunks of clinical information). Templates (equal to clinical forms) and archetypes (clinical fragments) are attempts to address the problems. This leads, Ian suggests, to 'flexible standardisation' which can address issues of local ownership, meet innovation and differences of opinion and requirements, and have managed extensibility. Derek talked about a 'national library of clinical templates for community nursing in Scotland'. The templates are developed from a mix of expert groups, standard tools and 'grey' content; using open source development model to get as much input as possible and get use, testing and buy-in. The website is supposed to be clinicaltemplates.org – but I could not access it this afternoon (nor the clintemplate.org url returned by Google). [Correction 25 November - both work fine when accessed from outside GCU - some kind of configuration problem with the servers when trying to access internally - thanks to Derek Hoy for the correction.]

Dickon Weir-Hughes, from the Royal Marsden Hospital, talked about 'NANDA's contribution to standardised nursing communication'. Margaret Hastings, NMAHP Clinical Lead for eHealth, Clyde Division, talked about Allied Health Professionals (AHP) and a project to look at where AHPs deliver services and how they interact with patients. There are as many AHPs in Scotland (8,000) as there are community nurses. From a study of 40,000 case summaries, 58% of AHPs' patients are seen in clinics; an AHP summary dataset, with 19 items, has been produced, to help provide information about AHP cases. The final speaker was Ann Wales, NES (NHS Education Strategic Framework) Programme Manager for Knowledge Management, speaking about strategic developments for managing knowledge and linking this to supporting all stages of the patient journey. Among resources mentioned were the elibrary (www.elib.scot.nhs.uk) and its various components (eg shared spaces such as the 'remote and rural'), the 'Get involved' website (http://www.nhsgetinvolved.org), and specialist elibraries for defined staff groups


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eBrochan report - part 2

The second session addressed engaging with technological change. Janette Bennett, Senior Clinical Advisor with BT Health Executive (although speaking from an NPIG – Nursing Professions Information Group – perspective), looked at issues from a health professional perspective, and Liz MacDonald, from the Scottish Consumer Council, from a citizen perspective. Janette distinguished between communication (some of which CfH had been doing, generally one-way and top-down) and engagement (which requires two-way dialogue between equals), which CfH had been poor at doing. She discussed the development of 'switch on cards', due to be published soon, which provide brief overviews of aspects of NPfIT (eg the NHS CRS, staff access to patients' records, and where a patient wants to limit access to records). Liz talked about some research from summer 2005, and lack of patient/citizen involvement in moves to development of electronic health records. She noted the possibilities for inaccurate information being held, and needs for ensuring confidentiality. The research was based in eight focus groups drawn from NHS users, patients with chronic conditions and informal carers, and explored attitudes to a single electronic health records. Findings were in line with much of the existing literature, including little awareness of how records are held, stored and shared; people want to have choices about their information and records, and want to be properly informed. There was general support for electronic records, and little wish for full opt-outs from a system, but concerns about levels of access. She highlighted issues of access similar to those being addressed in NPfIT, and concerns about security, confidentiality and access, and the need for some kind of patient records guarantee.

The third morning session focused on telemedicine, telehealth and telecare.

Frances Mair, Professor of Primary Care Research at University of Glasgow, spoke about 'Telehealthcare: current role and future challenges'. She defines telehealthcare as 'synchronous and asynchronous information and communications systems used for clinical information sharing', which range widely in use of technologies, and some of which are based around promoting self-care based in personalised systems using, for example, mobile phones and PDAs, as well as promoting equitable services, for example to remote and rural areas. She saw potential for transforming model of care from reactive to pro-active care delivered by integrated teams across time, place and conditions, with self-management support. She sees telehealthcare as a useful tool, along with many others, and not as a 'magic bullet', but there currently exists a lack of evaluation of services.

Colin Jervis, from Kinetic Consulting, spoke about Five ways RID might improve healthcare', covering identification, tracking, alerting and triggering, recording interventions and sensing.

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eBrochan report - part 1

This joint meeting of the BCS Health Informatics (Scotland) and BCS HI (Nursing) groups was held at Glasgow Caledonian University on 24 November, attracting over 70 participants. Heather Strachan, chair of the Scottish group and Richard Hayward, chair of the nursing group, welcomed participants.

Brochan is Gaelic for porridge – so why does the meeting use this as its title? We will find out later and tghere is a competition for attendees to come up with ideas.

The first session provided an update on eHealth strategies.

Ian Herbert, Vice Chair of BCS Health Informatics Forum, was the first speaker, dealing with 'The English Experience'. He began by giving an overview of the English NPfIT; this included the NHS Care Records Service (including the summary and detailed patient records), and the NHS Knowledge Service (which, he noted, had been very quiet recently). He noted that patient information sharing is a mix of push (messaging) and pull (browsing patient data). He noted that, as far as LSP applications and services, there had originally been an intent to take a 'rip and replace' approach (including GP systems), although there were now moves to a more evolutionary approach, and a changing approach to patient records.

He noted there were several reviews in progress, including the second NAO report, review by NHS chief Exec. (including looking at local ownership), and internal technical review; this indicates there are a lot of concerns. Major issues around NHS CfH include that it is attempting change driven by IT implementation, not business need (which is generally held to be the wrong way around), NPfIT procurements are based on weak requirements specifications, rendered out of date by recent NHS reforms, a lack of local ownership of acute implementations, lack of explicit funding for local business change and service transformation, and huge issues around information governance and patient data confidentiality. Other issues include 'what is the NHS Care Records Service?' as it seems unclear (even after several years of work on it) as to what it is meant to be, there is not enough work on some key standards (eg whether there is a need for a common record architecture) to underpin all the work, and there is no partnership with clinicians, informaticians, large parts of the NHS, etc. Other general informatics issues, such as data migration, and providing coherent views of records also affect the likelihood of success of the whole project.

Heather Strachan, in her role as Nursing, Midwifery and Allied Health Professionals (NMAHP) Clinical Lead for eHealth with the Scottish Executive (which she has been doing for six months), provided an eHealth update from the Scottish perspective. She described the Scottish eHealth programme as being committed to\delivering an Electronic health record, but with NHS being as local as possible, support for people with long term conditions and reducing the inequalities gap. The eHealth strategy is about incremental convergence, as opposed to 'rip and replace', exploiting what already exists and filling gaps where necessary; she noted that there was top level commitment and the likelihood of funds to support developments.

Further report to follow.

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Thursday, November 16, 2006

Kable - BMA flags up Care Record Service - 16 November 2006

Kable - BMA flags up Care Record Service - 16 November 2006

This report from Kable Healthcare suggests the BMA is urging it members to start discussing the upload of their data to the national spine. I wonder if these discussions will encourage or discourage the patients?

Rod
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Monday, November 13, 2006

AMIA2006 - free software AND free beer

The magical combination at the exhibition - free software AND free beer. The exhibition this year seems to be composed mainly of universities offering health and biomedical informatics courses, and with far fewer commercial exhibitors. Opposite the 3M stand (the one offering the free beer) is one from OpenACS (see med.openacs.org)

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AMIA2006 - Web 2.0 session

Margaret Maag, Peter Murray and Ray Schroeder presented a panal on 'Weaving a dynamic web: Web 2.0 applications in education, social networking and virtual conferencing'. The session was very well-attended, with over 120 people. Due to problems with the coverage of the wireless network not reaching into the depths of the room we were in, we were not able to blog the session live, as I had hoped. However, Margaret recorded the session which will be converted to a podcast and uploaded to her website - we will add the location here later.

Ray gegan the session with an overview of Web 2.0 and AJAX, and said a little about blogs. Peter discussed our use of blogs for conferences, and Margaret talked about her use iof podcasts with her students. A wide-raning discussion followed, with some interesting observations from the audience, and examples provided of individuals' use of collaborative document development and other Web 2.0 applications. Issues raised included the use of blogs and wikis in clinical environments.


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Sunday, November 12, 2006

AMIA2006 - the opening

The AMIA2006 conference (www.amia.org) has now started in earnest. After the 'phoney war' of meetings, tutorials, etc., the opening at lunchtime today (Sunday) featured the announcement of several AMIA awards, before the opening keynote given by Robert H. Brook of RAND Health. AMIA2006 seems to have about 1900 attendees, including a lot of students and others from Vanderbilt University. The award winners announced included Suzanne Bakken (Virginia Saba Informatics Award), and Ted Shortliffe (Morris Collen Award of Excellence).

I chaired two sessions yesterday, which were reasonably successful. We had a meeting of IMIA's Academic Members, which included a presentation on the Goettingen biomedical informati s curriculum, and discussion of the IMIA guidelines on health and medical informatics curricula. Plans are that the Academic members and Education WG will collaborate on updating the IMIA guidelines. The late evening workshop looking at international collaboration among WGs of various organisations attracted a small but select audience; but holding the workshop was useful, and gave the opportunity for people to express interest in IMIA involvement.

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Saturday, November 11, 2006

medinfo2010 conference

The medinfo2010 conference will be in Cape Town, South Africa in September 2010. After presentations by the two bid teams and a lively discussion of issues, the South African bid won in a vote of IMIA members.

In the meantime, don't forget medinfo2007 in Brisbane, Australia - www.medinfo2007.org

The AMIA2006 conference starts today.

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Friday, November 10, 2006

AMIA2006 and IMIA meetings

AMIA2006 itself, ie the conference has yet to begin, but there is still plenty going on. Yesterday the IMIA (International Medical Informatics Association - www.imia.org)) Board met for a full day meeting. Today, we have the IMIA General Assembly meeting, which is the governing body of IMIA and comprises national representatives, Working Group chairs, academic members, etc. One of the main items on the agenda is to select the venue for medinfo2010. There are two candidates, Copenhagen, Denmark and Cape Town, South Africa; the result will be posted later if I can get Internet access.

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Sunday, November 05, 2006

AMIA2006 - the prequel

As happened last year, rather than develop a separate blog for AMIA2006, a series of reports from the event will appear here. The 2006 Autumn (or in US parlance, Fall) Symposium of AMIA, the American Medical Informatics Association (www.amia.org), takes place in Washington, DC, USA on 11-15 November. Immediately prior to this, on 10 November, the annual General Assembly meeting for IMIA, the International Medical Informatics Association (www.imia.org) will take place.

As I will be very busy with meetings and presentations, I am not too sure how much blogging I will be able to do - hopefully others there can also be persuaded to contribute.

Again, as last year, the event is titled 'Biomedical and health informatics: from foundations to applications to policy', and has the usual conference structure and mix of posters, peer-reviewed papers, panels, workshops, etc.

Assuming the technology allows, there will be more starting on Thursday 9 November.

Peter Murray

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Wednesday, November 01, 2006

Warning over privacy of 50m patient files | The Guardian

Warning over privacy of 50m patient files | The Guardian | Guardian Unlimited

Today's Guardian newspaper carries a front page story on the privacy of patients files to be uploaded to the NHS's "National Spine" without their consent.

A more in depth piece is provided under the title From cradle to grave, your files available to a cast of thousands

Comment from some of the key players is included in
'A national database is not essential'

It also includes a sample letter, in a column entitled What can patients do? , which patients are encouraged to send to their GP and the Secretary of State for Health.

The stories are rounded off with a leader article Spine-chilling

I hope that this will get the debate into the public domain, following the worries some of us have been writing about for years.

Although I see massive potential benefits which can arise from electronic patient records, I'm also aware of the risks and regret the fact that patient consent will not be sought or required and that the "sealed envelope" which has been promised to protect particularly sensitive information has not been created.

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