Informaticopia

Friday, September 26, 2008

T-Mobile, Android, and Google Health?

I'm excited about the new T-Mobile G1 coming with Google's Android on it. That means we'll have a full, open source web compliant platform to develop not only health, but other applications. The browser and built-in tools will be fun to play with! T-Mobile is expanding its network to address deadzone or low service issues. One prognisticator claimed that at least 10% of the cell market would be on Android by 2010. That could be because of the other, supposed inside rumors.

That is the other good news, though rumor: The G1 is going to have a much lower price than iPhone, perhaps as low as $79 with a 2-year plan, and be sold in Sam's Clubs, Targets, Walmarts, and a few others, with even pay-per-minute plans. That could boost a lot of people getting and using them, especially the lower-income folks. Keep in mind these would be the people we'd want to target for health applications, especially, since the poor are unfortunately tied to more health issues (for lack of resources to manage).

I have little doubt it means GoogleHealth will be avialable on it. Imagine the things we can do for healthcare then... a true, mobile personal health record!

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Thursday, September 18, 2008

Acess to health records - two major announcements

The last 48 hours have seen two major announcements about changes to access restrictions for patients records in the UK's National Health Service. The first will require staff are to seek patients' specific consent before reading their electronic medical records, the second was an announcement of a consultation with the public and healthcare professionals on the use of patient information for purposes such as health research and managing and planning care.

Connecting for Health, the agency charged with the delivery of the NHS's National Programme for IT has finally bowed to pressure from a wide range of patient and professional groups and changed the "consent model" which will be used in an attempt to protect patient confidentiality when dealing with electronic health records uploaded onto the "spine". As has been noted on this blog and elsewhere the original model assumed the consent of patients to upload and share the information they gave to healthcare professionals, unless they actively "opted out", and proposed the use of sealed envelopes for particularly sensitive information. This has been challenged in various ways and was criticised in the evaluation of pilot projects by University College London, published in May.

According to The Guardian 638,000 patients in the five trial areas were written to about plans to share their GP records, only about 2,500 opted out and 500 said their records could be uploaded with conditions. However many thousands in the trial areas were unaware of the public information campaigns, and NHS staff were often unaware of an obligation to patients who wanted to be notified when staff wanted access to their file.

According to the report on E-Health Insider Professor Patricia Greenhalgh, the lead author of the UCL report, said she was delighted by the decision.

“The most consistent and disturbing finding from the UCL evaluation of the SCR was concern from NHS staff, patients, professional organisations and civil liberties groups about the original ‘implied consent’ model,” she said.

According to the Health Service Journal this new approach provides a simplified model which has the backing of the BMA, Royal College of Nursing, medical defense unions, chief information officers and the General Medical Council.

This change is seen as moving the system in England towards the one chosen in Scotland and Wales, more of a consent to view - however it could be argued that consent to share is still implied as patients will not be asked directly whether they are happy for their records to be shared via the national spine.

The second independent but related announcement, concerns a 12 week "consultation exercise" being run by Tribal Consulting for Connecting for Health giving patients and the public the opportunity to comment on the ways in which their information is used for research and planning purposes and examine the potential benefits, legal safeguards and practical steps available to meet confidentiality and ethical obligations. This follows various criticisms of the ways in which the "Secondary Uses Service/NHS Information Centre" operates, and criticisms of the Care Records Guarantee.

Some of the questions included are:

* Who should have access to patient data?
* For what additional or secondary uses should data be used other than direct care?
* What process should govern access when individual patients can or cannot be identified?
* Who should control and manage access to the information?
* What consent options and safeguards should there be for patients?
* What concerns do people have about secondary uses and how can they best be addressed?

The public consultation covers the use of patient information for uses such as:

* Research into prevention and treatment of diseases
* Improving public health
* Managing and planning future health services
* (Health) planning screening
* Quality control (clinical audit)

It will be interesting to see how much involvement there is from the public and health professionals, although the impressions given by the "experts" on the news release page suggest that the benefits are a given - and runs the risk of suggesting that a decision has already been made to share the information - and that the consultation will only affect how this might be done. According to E-Health Insider Professor Michael Thick (chief clinical officer for NHS Connecting for Health) said people would not give explicit consent to their information being included in the new service, which will collect data automatically from the NHS CRS, Choose and Book, and other national systems. He also indicated that patients would not be able to opt out, although they will be able to apply under section 10 of the Data Protection Act to prevent use of data that would cause them distress.

As discussed on this blog when the report, entitled the Data Sharing Review by Richard Thomas, the Information Commissioner, and Mark Walport, the director of the Welcome Trust, came out in July, there is a major difference between anonymous and identifiable personal data. When Connecting for Health say that " while patient identifiers will “normally” be removed from the information “sometimes” these will be required", alarm bells should start ringing.

The safeguards provided by NHS Research Ethics Committees need to be very carefully examined if they can grant access to pseudonymised and in some cases patient identifiable data, as well as anonymised records.

According to PULSE the consultation will also raise questions over the extent to which the NHS should be sharing data with external researchers. Last year Connecting for Health’s subcontractor BT suggested in a written submission to the Health Select Committee that pseudonymised patient data could be shared with pharmaceutical company researchers to earn the NHS cash.

The invitiation to consult along with supporting documentation can be found at http://www.connectingforhealth.nhs.uk/systemsandservices/research/consultation and I would encourage everyone with an interest to get involved.

I feel these two announcements suggest that the balance between patient confidentiality/privacy and the demands of governments and other organisations which trawl personal data need to be very carefully observed.

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Wednesday, June 04, 2008

Researcher job for the NHS Connecting for Health Evaluation Programme

An interesting looking job advert for a Research Associate/Fellow working on systematic reviews for the NHS Connecting for Health Evaluation Programme has recently been advertised.

The job is at the School of Clinical Sciences and Community Health at the University of Edinburgh, in association with Imperial College London, and will involve undertaking a systematic overview of the impact of information technology on the quality and safety of health services. This will assemble a series of systematic reviews about information technology in health services and weave these into a comprehensive and authoritative report with reference to safety and quality of care.

If the outputs are up to the standard of the Report of Evaluation of Summary Care Record Early Adopter Programme published a few weeks ago then this could be very worthwhile work.

If I was in Edinburgh (and the post had a slightly higher salary) I would consider applying for it myself.

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Tuesday, May 06, 2008

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://www.ucl.ac.uk/media/library/screvaluation, 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.

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Thursday, September 13, 2007

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.

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Saturday, April 21, 2007

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.

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Wednesday, March 28, 2007

ECDL module for health

The British Computer Society recently announced a new module to be added to the European Computer Driving Licence (ECDL) specifically for healthcare staff, and developed in conjunction with Connecting for Health.

It aims to "provide candidates with an understanding of the key principles and policies relating to healthcare information systems and the practical skills needed by users. As well as enabling users to read, retrieve, update and store patient records accurately, the unit also provides candidates with a thorough understanding of the key issues regarding patient confidentiality and data security."

It has been piloted with 100 staff quite successfully but it will be interesting to see if this is rolled across the NHS and whether it is seen as a high priority for managers and useful for individual staff.

For More info:
BCS develops ECDL for NHS from Kable
BCS Develops New ECDL Health Unit for NHS from eGov Monitor


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