Report of Evaluation of Summary Care Record Early Adopter Programme

An interesting report has been published today into the evaluation of the Summary Care Record (SCR) Early Adopter Programme. It highlights many of the difficulties which have been encountered and makes recommendations to improve for the future.

The evaluation team led by Trisha Greenhalgh at University College London discusses criticisms of the programme focusing on "implementing a technology rather than a broader and more developmental focus on socio-technical change". They also make comment about the ethical and moral considerations inherent in the "current ‘hybrid’ consent model for the SCR, which is widely seen as overly complex and unworkable (and which many GPs and Caldicott Guardians see as unethical), and consider alternative models, notably ‘consent to view’, that have been shown to be acceptable and successful in comparable programmes" in Scotland and Wales. This was despite the fact that few of the patients in the pilot area reported strong feelings about whether they had a SCR and low levels of "opt out".

The report also criticises an "outdated model of change – centrally driven, project oriented, rationalistic, with a focus on documentation and reporting, and oriented to predefined, inflexible goals", and argues for "more contemporary models of change (which are programme-oriented and built around theories of sensemaking, co-evolution and knowledge creation) include soft systems methodology, technology use mediation and situated action".

The full (138 page) report is available from http://preview.tinyurl.com/3jf6hk, and although I've only read the executive summary so far I think it should be compulsory reading for anyone involved in electronic health records.

Further commentary and discussion is taking place on the E-Health Insider site under Urgent review of SCR consent model recommended and elsewhere. It will be interesting to see if the lessons learned will be put into practice.

Full text of Downing Street briefing

The 2002 Downing Street briefing about NHS IT discussed below has now been realesed in full text on the wikileaks web site under the heading "Tony Blair 2002 NHS IT briefing" at https://wikileaks.be/wiki/Tony_Blair_2002_NHS_IT_briefing .

Wikileaks is an uncensorable version of Wikipedia for untraceable mass document leaking and analysis. It combines the protection and anonymity of cutting-edge cryptographic technologies with the transparency and simplicity of a wiki interface. Comment and discussion, which can be anonymous, is welcomed on the site.

The meeting which started NPfIT

Computer weekly has several pieces themed around the papers recently released after 3 years of a Freedom of Information Act request. There give some detail about the briefing held in Feb 2002 at which Department of Health staff and industry advisers from Microsoft UK and Cisco laid out plans for IT in the NHS to Tony Blair and several ministers.

* Was NHS IT plan agreed before Downing St meeting?

* Secret papers reveal Blair's rushed NPfIT plans

Coming in the week when we hear that "More than £4bn spent on NPfIT by April 2008" they illustrate the lack of careful planning on which the whole enterprise was based.

Forthcoming release of "Downing Street Papers" re NPfIT

After three years of requests under the Freedom of Information Act Tony Collins of Computer Weekly has finally been successful in his campaign for the release of the briefing papers which led to the creation of the National Programme for Information Technology (NPfIT) in the UK's National Health Service.

A piece entitled "Secrets of Blair briefing on NPfIT to be surrendered" gives further information about the process which has finally led to the release which is expected this week. In a similar way to my own campaign for the release of the report into the NHSu the cabinet office have withdrawn their appeal against the Information Commissioners ruling just before the case reached the Information Tribunal.

I'm sure the papers will make interesting reading.

Major reports on NHS & NPfIT

Todays publication of the House of Commons Health Committee into Electronic Patient Records along with yesterdays Report Our Future Health Secured? A review of NHS funding and performance for the King's Fund means I have lots of reading to do - which is getting in the way of preparing a major document for my DPhil.

I've not got all the details from the Health Select Committee report yet but have spotted a couple of conlusions which I think point out some of the problems they have identified in the NHS's National Programme for IT and Connecting for Health approach:

NPfIT is characterised by a centralised management structure and large-scale procurement from private suppliers. This approach aims to offer improved value for money and to address the previously patchy adoption of IT systems across the health service. The Department defended the progress made by NPfIT to date, arguing that the programme is on course to succeed. However, serious doubts have been raised, from sources including the Public Accounts Committee, about how much has been achieved and about the likely completion date. In particular, progress on the development of the NCRS has been questioned.

The input of end-users is vital in planning, design and implementation.

As EPR systems make more personal health data accessible to more people, breaches of security and confidentiality must be regarded as serious matters.

The arrangements for the SCR will be strengthened when "sealed envelopes" are made available to protect sensitive information and when patients can access their record via the HealthSpace website... Connecting for Health must ensure that both "sealed envelopes" and HealthSpace are introduced as soon as possible, particularly so that their effectiveness can be assessed during the independent evaluation of the early adopter programme.

The sharing of unique smartcards between users is unacceptable and undermines the operational security of DCR systems. However, we sympathise with the A&E staff who shared smartcards when faced with waits of a minute or more to access their new PAS software. Unless unacceptably lengthy log-on times are addressed, security breaches are inevitable.

I'm sure there will be more to follow and that this report will generate wider interest - but if others have comments please add them.

IBA bidding again for iSoft

The continuing saga of troubled iSoft had another twist this morning (& those of us in Australia probably got it a few hours ahead of colleagues in the UK). IBA has put in another increased bid (available from the Australian Stock Exchange by searching announcements for IBA at http://www.asx.com.au/asx/statistics/announcementSearch.do
to buy the company, following it's controversial previous attempt, and the iSoft boards acceptance.

It has certainly generated some discussion at the Medinfo conference and it will be interesting to see the response from CompuGROUP and the NHS NPIT.

CW FOI case for Downing Street NPfIT papers

I was very interested to read about this attempt by Tony Collins of Computer Weekly to obtain the Downing Street papers about the creation of the National Programme for IT (NPfIT).

There are so many parallels with my long Freedom of Information request to obtain the report into the NHSu - I just hope that my eventual success is securing release of the Wells Report is able to provide some precedent in opening up the government/Connecting for Health secrecy about the whole process.

Health Select committee written submissions published

The written submissions of evidence to the House of Commons Health Select Committee (relating to evidence submitted about NPfIT) has now been published on the committ'es section of the House of Commons website.

See >>> or tinyurl.com/3yggw8 for all the links. Thanks to Ewan Davis, of the BCS Primary Care Specialist Group, for pointing us to this. The materials present include written submission from the British Computer Society (>>>), compiled mainly by the BCS Health Informatics Forum, and the Royal College of Nursing (>>>)

Technorati Tags: NPfIT

Shared Care Record workshop

Yesterday I attended an "Open Workshop" organised by the NHS Faculty of Health Informatics.

The workshop was led by Dr Gillian Braunold (Connecting for Health, National Clinical Lead for GPs) and provided an opportunity to explore a range of issues surrounding the Summary Care Record which is currently being piloted by Connecting for Health. This will provide an outline record for every NHS patient, initially based on a summary by their GP.

The event was held at Armada House in Bristol which provided easy access for me and was one of the first organised by the Faculty in the south of England.

The day was opened and chaired by Dr Paul Woolman who introduced the day by outlining the case for the SCR by citing references ranging from the US Institute of Medicine Preventing Medication Errors to the New Statesman supplement on IT and Modernisation (Oct 2006).

Gillian outlined her background and asked delegates to describe their role and what they wanted to get out of the workshop. She then described some of the lessons and issues from the early adopter sites (such as that in Bolton which was announced in March). She discussed some of the issues around opaqueness, delays and politics and compared the approach in England with that in Hampshire, The Wirral and Scotland who are "getting on with it". She also raised issues, which ran throughout the day, about consent, opt-in and opt-out models and sealed envelopes, which have been discussed on this blog and elsewhere (eg SCR opt-out sets 'onerous' conditions, says GP EHI).

Of the £12.4 billion budget for the National Programme for IT only a small percentage is being spend on the SCR, but Gillian described it as being one of the keys to making all of the work on sharing records come true.

The rationale for the inclusion of medications and allergies in the first uploads of records was described, and linked to work on security and confidentiality including Role Based Access Controls (RBAC), workgroups, "legitimate relationships" audits & alerts, and aspects of physical security including smartcards.

Issues about data quality within records were briefly touched on along with developments for patient access via HealthSpace, including e-gif level 3 security which is promised for May 2007.

After lunch David Nash gave a demonstration of the Clinical Spine Application (now renamed Summary Care Record) showing the view that a doctor in A&E may get to the data which has been uploaded from a GPs record. This raised lots of discussion about RBAC, overriding dissent etc. Demonstrators (both online and stand alone) of this functionality are being built.

Dr Chris Frith then discussed sharing records with patients in his surgery and gave a demonstration of the ways in which patients can do this via the surgery web site and EMiS access. He described the advantages of patient access as increasing trust and accuracy and reducing errors. The usage figures are still quite low bu8t some useful insights are being gained.

Another demonstration, which had been arranged at short notice, was by Brian Seaton, who showed his own medical record from a credit card USB drive using HealtheCard and discussed the layout and cost issues related to keeping the record up to date and accessing it (especially when NHS computers are having USB ports removed because of data slurping).

The final part of the day was workshop where delegates divided into groups to consider some of the issues around business processes and consent models which are being raised by this work and still being grappled with.

Generally the day was quite a useful opportunity to learn about the latest developments and explore some of the ongoing issues, which are important for everyone whether healthcare professionals or patients. It will be interesting to see what the effects of the public information campaigns in early adopter areas will be and how many of the current proposals are still in place ina years time.

Public Accounts Committee Report on NPfIT

I only noticed today, when this week's 'Computer Weekly' popped through my letterbox (yes, the dead tree version) that the Public Accounts Committee's latest report into NPfIT was published on April 17.

Some points from the report's Summary, which has four conclusions, include:
- no firm plans have been published for deploying software to achieve the vision of a shared electronic patient clinical record;
- the suppliers to the Programme are clearly struggling to deliver, and ... the Department [of Health] is unlikely to complete the Programme anywhere near its original schedule;
- the Department has much still to do to win hearts and minds in the NHS, especially among clinicians;
- four years after the start of the Programme, there is still much uncertainty about the costs of the Programme for the local NHS and the value of the benefits it should achieve.

Computer Weekly say that 'The government is expected to respond to the report and its recommendations by July.'

I don't think any comment is needed on the above - but may feel a need to provide some when I have been through the full report.


The report is available via the the House of Commons website >>> and the Computer Weekly report on their website >>>

Technorati Tags: NPfIT, Public Accounts Committee

1st uploads from GP to national spine

The first upload of GP patients records to the NPfIT national spine are about to start.

Bolton has been selected as the pilot site and two GPs practices in the town will begin uploading GP records as part of the "summary care record" which will contain containing details of name, address, medication history, serious illnesses and allergies. These will then be accessible to the out-of-hours provider and A+E department.

Letters and leaflets explaining the programme will go out in the next few weeks, and local residents will have the option to "opt out". This long fought for opt out will have three possible options. The first is a total refusal for their records to be uploaded. The second option is to limit the people who are able to access it and the final options is that particular details - such as an abortion or being on HIV medication - must not be uploaded (the so called and long awaited sealed envelope). However, very few details of how this will be achieved have yet been made available.

It will be very interesting to see how many people take one of the options to restrict the use of their personal and sensitive information.

Further information is available from:

* The Guardian 15th March First test launched of NHS's controversial 'Spine' database
* E Health Insider Starting gun fired for Summary Care Record roll-out

NHS CfH Southern Cluster ETD day

Today I attended a study day organised by NHS Connecting for Health Southern Cluster Education, Training and Development (ETD) at Taunton Racecourse.

The day was chaired by Nick Jupp (ETD Lead, NHS Somerset Health Informatics)

The first speaker was different to the usual NHS "Men in Suits" when - Andrew Raynes (ETD Programme Manager, NHS CFH, Southern Cluster) appeared in his schoolboy outfit and used a high tech drum kit to illustrate points he wanted to make about working together, under the title of "NPfIT Skool of Rock". He achieved audience participation with the use of maracas and tambourines.
(I have video available for blackmail purposes)

The next (rather dry) presentation was on the Role and Benefits of Change Management within NPfIT by Steve Swift (Business Change Manager , Fujitsu NHS Services)

After coffee and some useful networking with colleagues from the NHS, Cerner and Fujitsu alliance, Phil Bolton (E-learning Development Manager, Royal United Hospital, Bath) gave a presentation about the issues they have experienced in training for their implementation of Cerner Millenium Release 0 which has been delayed for 14 months (so far) and demonstrated an elearning application they have developed rather than use the training domain provided by Fujitsu.

The final presentation of the morning was by Dr Roger Tackley (Chairman Southern Cluster Terminology Group SCCAG) who talked about the SNOMED CT terminology system as a concept. This seemed unfamilar to many of the trainers present and he emphasised the importance of this for clinical use of the Cerner Millenium system.

After a good lunch there were four parallel sessions:
• Table top challenge –Maria Scott (Clinical Benefits Advisors, NHS CFH)
• Professional Support and Development workshop - Di Wilson (ETD Networks Development Manager, NHS CFH) / Jackie Smith (Informatics Specialists Development Managers, NHS CFH)
• CIS Accredited Learning – Kamru Mohammed (ETD Systems & Platform Lead, NHS CFH)
• Implementing Training standards (What do you want out of the standards – A Case Study approach) – Jonathan Coe (ETD Standards Delivery Manager)

I attended the session on Professional Support and Development which involved teams using a variety of children's toys, sellotape, and modeling clay to represent what health informatics is and the knowledge and skills required - and the role of NPfIT (during which I got to do a bit of juggling!)

The day closed with a panel session answering (or trying to) some of the questions which had been put onto post it notes during the day by delegates.

An undercurrent to the day was provided by a report on the Radio 4 news this am which was carried by the Times as £6.2bn IT scheme for NHS ‘is not working and is not going to work’ with the comment that "A lack of vision and poor understanding of the sheer size of the task meant that the IT overhaul “isn’t working and isn’t going to work”, by Andrew Rollerson, an executive with Fujitsu. As I was sitting at a table with some of the staff from Fujitsu this caused some discussion!

Generally it was quite an interesting day - although obviously aimed at NHS ETD staff rather than me - and I did make some useful contacts and learn some bits I wasn't aware of.

I am assured that the power point presentations will be made available on the NHS Connecting for Health Southern Cluster Education, Training and Development (ETD) web site.

Technorati Tags: NHS, NPfI, CfH, ETD

BCS HIF report - The Way Forward for NHS Health Informatics

The Way Forward for NHS Health Informatics : Health Informatics Forum : BCS

The British Computer Society (BCS) Health Informatics Forum has produced a major new report which reviews the current state of Informatics in the NHS and suggests ways forward. Peter provided a link to this a couple of days ago but I've only just had a chance to read it.

The report suggests that the current problems facing the NHS's IT Programme require a realignment of the National Programme for IT.

According to the BCS Health Informatics Forum Strategic Panel, the NHS Connecting for Health (CfH) programme can still make a massive contribution to safer and more appropriate patient care and remains in full agreement with the Wanless report that 4% of NHS turnover should be spent on business led informatics.

"One of the fundamental goals," according to Dr Glyn Hayes, Chair of BCSHIF, "must be to support the diverse business processes that recognize local constraints and individual patients' values, and focus on delivery and implementation at Trust level. Instead of the current monolithic systems intended to meet most of the needs of users in a local health community, we need a range and choice of more innovative and agile solutions contributing to a common purpose, encouraged within national standards to deliver functionality in whatever way suits the users and suppliers. This should not be interpreted as ruling out adoption of local server provider (LSP) products where they fit the business requirements."

Key recommendations of the report include:

* The Provision of a business context for NPfIT at national and local level.
* A focus on local implementations at Trust and provider unit level, e.g. hospitals, diagnostic & treatment centres, community and mental health Trusts, practices. Providing specialty and service-based systems within provider units will encourage clinical involvement and give quicker benefits.
* There needs to be a major emphasis on standards to enable systems to interoperate effectively, rather than focusing on a few monolithic systems.
* The strategy should be evolutionary, building on what presently works and encouraging convergence to standards over time, rather than revolutionary.
* To adopt a truly patient-centred approach at the local health community level
* There are major issues about the sharing of electronic patient data which need to be resolved. These must not be hijacked by technical issues, and informed patient consent should be paramount.
* Transform NHS CfH into an open partnership with NHS management, users, the informatics community, suppliers, patients and their carers, based on trust and respect.
* The clinical professions, NHS management and informaticians should collaborate to provide clear and comprehensive guidance for all sectors on good record keeping and data management – clinical and other, and embed this in undergraduate and post graduate training. The NHS should facilitate the take-up of this guidance.

I feel the report contains a lot of good ideas, however in addition to the focus on managerial arrangements, current issues around information governance and ownership need greater emphasis along with the clinical benefits which should flow if the systems are put in place appropriately.

Technorati Tags: NPfIT, BCSHIF, CfH

Patients win right to keep records off NHS computer | Health | SocietyGuardian.co.uk

Patients win right to keep records off NHS computer | Health | SocietyGuardian.co.uk

Today's Guardian is reporting that "The government has bowed to privacy concerns about a new NHS computer system and conceded that patients should be allowed a veto on information about their medical history being passed from their GP to a national database."

This follows the letter sent by the Department of Health a couple of weeks ago to those who expressed wories about the proposals.

I think it is also interesting that these reports are still quoting Lord Warner who "retired" earlier this week - & I do wonder why that retirement was announced on a big news day?

Technorati Tags: NPfIT, BCSHIF, CfH

BCSHIF report - where should NHS CfH go from here?

The report 'The Way Forward for NHS Health Informatics - Where should NHS Connecting for Health (NHS CFH) go from here?' prepared on behalf of the British Computer Society (BCS) by the BCS Health Informatics Forum Strategic Panel is now available.

A direct link to downloading the report is at:

http://www.bcs.org/upload/pdf/BCS-HIF-report.pdf

There is a report on the Daily Telegraph website >>>

Technorati Tags: NPfIT, BCSHIF, CfH

Digital healthcare: the impact of information and communication technologies on healthcare

Digital healthcare: the impact of information and communication technologies on healthcare

The influential Royal Society has today published it's long awaited report into "The impact of information and communication technologies on healthcare."

I'm still making my way through its 59 pages but it does seem to provide an interesting contribution to current and future debates.

A few of their comments and recommendations jumped out at me as being particularly significant and useful:

"The single most important factor in realising the potential of healthcare ICTs is the people who use them. The end
users of any new technology must be involved at all stages of the design, development and implementation,
taking into account how people work together and how patients, carers and healthcare professionals interact."

"We recommend that the higher education institutions and professional bodies responsible for the different disciplines adapt their curricula to integrate the use and understanding of healthcare ICTs into the basic training and continuing professional development of healthcare professionals."

A long with various recomendations about implementations and research needed to underpin future developments.

For further commentary see:
EHI Existing ICT underused, Royal Society finds

Technorati Tags: Health Informatics, NPfIT