Saturday, June 20, 2009

Who Sees What? project

The Who Sees What? project is a new website designed to give ordinary people the opportunity to discover, discuss and decide about the new ways in which the NHS wants to use electronic patient records.

Who Sees What? is a collaboration between the New Economics Foundation and the Centre for Science Education at Sheffield Hallam University. It’s funded by the Wellcome Trust.

I feel these are important topics which require wider discussion and welcome this contribution to the debate.

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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 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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Friday, August 29, 2008

XO Laptop, or One Laptop Per Child Project: An Extension Idea for a Sturdy Tool

I woke up at 4 a.m. thinking how great it one be to apply the One Laptop Per Child (OLPC) XO Laptop ( to several ideas.
  1. Educating children on health: It already has education as a mission, but I wonder how much of that is devoted to evidence-based health education practices? It uses gaming too, so it could also be adopted by groups such as Games for Health ( And, projects such as Re-Mission ( could be a model for how it teaches children compliance and self-care with other diseases.
  2. Medication Tracking and Compliance: In the US and other country rural areas, it could have something similar to the My-Medi-Health project, which aims to investigate and research methods for improving compliance among children. What about a module within it that has a personal health record? Or even one which encourages the child to document vital signs, medications, and treatments and then can beam it back to a provider's computer in the clinic? (
  3. A Remote Healthcare Provider Computer: This computer has incredible potential for remote areas for having a more robust electronic medical record. It could act as a repository for data until the healthcare provider could get back to a central computer and then, using its wireless abilities, beam them back into the main database (sync them up).
  4. Home Health Care for Rural Areas: As above, especially with nursing modules it could bring about cheaper care and bedside documentation for nurses in the field.
  5. Disaster Relief Use: What about developing a special model of this very durable PC for use in mass casualty disaster situations? Especially since it comes with a hand crank, and after disasters we often don't have battery and networking capabilities, note that it has a hand-crank to recharge and it has wireless social networking software built in. So, it could not only tell you where other healthcare providers are in the command zone, but share information on triage and treatment. Just a little retweaking of the system and it's ideal... especially because it is designed specifically for sturdiness, including water and sandproof and dropping and so on...
  6. Transcultural Care: The team using it are experts at symbolization and crossing language barriers. They could help develop a universal standard, or even several language algorithms, for helping international aid workers work together in mass casualty.
  7. Special Needs Children: I wonder how well it would work for autistic children and others within that spectrum, especially combined with
  8. Accessories: Could other equipment be developed to accompany it? For instance, a Wii Fit board to measure weight in the field, or something sturdier and just as cheap (the board itself is $87 retail or so bought directly, not through marked-up online vendors). Or, blood glucose monitoring devices and such? A blood pressure cuff?
  9. Field Database: Could a more remote version be created for use as field command centers? Even have database server versions, using the peer-to-peer wireless, to collect data? Not just for mass casualties, but healthcare in remote areas? Again, a sturdier, server version, but bring it back to the main computer and sync it up, perhaps in a healthcare truck, van, airplain, or helicopter or such? Valued data could be used for research, health care improvement, disease tracking, and even fundraising. Think of the value to groups like the Red Cross and Red Crescent Societies. The CDC could really benefit from point-of-impact data collection.

What would it take to raise the money for it? Could the XO team help raise the money to form a separate group to investigate using it this way? Maybe even the Vanderbilt School of Nursing faculty and staff could be involved and find grants to make this happen? Maybe a research project for a grad student or two? Are there others who are interested in seeing this happen? Is it visionary?

Just some thoughts. Thanks for listening! - Richard Aries, MSN, RN, EMT

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Monday, June 23, 2008

UWE pioneers health training using new NHS records software

University partners with Cerner to train nurses and health staff to use electronic patient records

Bristol. 23rd June 2008 - To continue its healthcare education leadership, the University of the West of England (UWE) today announces that it will implement the Cerner Academic Education Solution (AES) to train nursing and other health staff on how to use the new electronic patient record system being implemented for the NHS. As the NHS moves toward the use of electronic health records for all patients, the new project means nursing and other health sciences students at UWE will have the opportunity to use similar software to that being introduced in hospitals.

The NHS will use software from Cerner, a major global healthcare information technology (HIT) company, to provide the electronic health records in a large number of its hospitals. The Cerner AES is the only full clinical information system adapted to support healthcare curricula and classroom instruction. By selecting Cerner, UWE chose a supplier with a proven track record. Cerner is the market leader in providing educational HIT solutions, with more than 7,000 students at 40 campuses around the world using the Cerner AES. UWE is partnering with Cerner to adapt the system for the English healthcare practice and the UK curriculum. UWE students will begin using the Cerner AES in September 2008.

Professor John Duffield, Pro Vice-Chancellor and Executive Dean, Faculty of Health and Life Sciences, UWE said: “This partnership is a great opportunity to keep nursing education at UWE at the forefront of current healthcare practice, ensuring that our students are fully prepared for the environments in which they are going to be caring for patients and clients.”

“The use of Cerner AES solution will form a key part of our curriculum as a foundation for evidence-based clinical practice, supporting development of critical-thinking skills and enhancing unidisciplinary and interdisciplinary education. It is capable of being used with human patient simulators and will be available online anywhere anytime.”

Alan Fowles, Vice President, Cerner Limited said: “As healthcare embraces the digital age, the incoming workforce will need to ensure they have a high degree of knowledge and understanding of how healthcare technologies work. A significant number of Trusts in the UK use, or are ready to implement, the Cerner Millennium® healthcare computing platform. By partnering with us to use the Cerner AES solution, UWE will be able to prepare the nurses and healthcare professionals of tomorrow with the knowledge and skills required to work in the NHS, allowing them to focus on the best patient care possible.”

Editor's notes

• UWE’s School of Health and Social Care is nationally and internationally recognised for its dynamic, outstanding and highly creative contributions to policy and practice. The School is primarily based at the Glenside Campus in Bristol and has regional centres in Bath, Gloucester and Swindon. For more information visit
• About Cerner: Cerner is taking the paper chart out of healthcare, eliminating error, variance and waste in the care process. With more than 6,000 clients worldwide, Cerner is the leading supplier of healthcare information technology. The following are trademarks of Cerner: Cerner and Cerner Millennium. (NASDAQ: CERN),

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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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Friday, February 09, 2007

Enquiry into Electronic Patient Records

On 5th Feb 2007 the Health Select Committee announced the terms of reference for its inquiry into the Electronic Patient Record and its use. The terms of reference are available in their press notice of 5 February. The deadline for written evidence is Friday 16 March.

The inquiry will focus particularly on the following areas:

• What patient information will be held on the new local and national electronic record systems, including whether patients may prevent their personal data being placed on systems;

• Who will have access to locally and nationally held information and under what circumstances;

• Whether patient confidentiality can be adequately protected;

• How data held on the new systems can and should be used for purposes other than the delivery of care e.g. clinical research; and

• Current progress on the development of the NHS Care Records Service and the National Data Spine and why delivery of the new systems is up to 2 years behind schedule.

I feel this is a good individuals and organisations to ensure that issues that they feel are important are included in the inquiry.

These might include:
* The type, quality, specificity and identifiability of the information which will be routinely shared in the NHS (and possibly beyond), and the right of the patient to insist that their information is not included or is restricted.

* The mechanisms, both technological and human, for controlling and securing access to the information. The recent case of staff in an A&E department sharing smartcard access, because it took too long to log on and off the system, highlights the risks.

* The risks of sharing detailed patient information with bodies such as drug companies- even if attempts have been made to annonymise or pseudo-annonymise it beforehand.

* The causes of current delays in implementation & the importance of getting the NHS to "own, love and understand" the IT programme in a way that it has not done up to now as suggested by David Nicholson a couple of weeks ago(see Picture this: an NHS data project that everybody loves, Guardian 8th Feb). In addition, comments may be welcomed about the current debates relating to the balance between central control through NHS Connecting for Health and local health communities.

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