1.  The Royal College of Paediatrics and Child Health would like to make the following submission to the House of Commons Health Select Committee in response to Health Committee Press Notice number 12 announcing the enquiry into the Electronic Patient Record and its use and inviting contributions of written evidence to the Committee regarding this enquiry. The main objects of the College are to advance the art and science of paediatrics, improve standards of medical care to children, and to educate and examine doctors in paediatrics. Additionally, the College has a function in providing information to the public on the health care of children. The following points deal specifically with the needs of children and young people.

  2.  There must be adequate safeguards for confidentiality. This is primarily a technical design issue although staff training will be required. Where there are genuine safety concerns, for example in the context of a partner fleeing form domestic violence, safeguards about revealing the address and location of the family can be increased without the health data needing to be hidden.

  3.  Regardless of the complexity of information being held on the system, it cannot be in the interests of children and young people for their data to be withheld from the system. Indeed if parents are able to prevent their children's data from being entered onto the system it is likely that the planned information sharing index supporting the aims of the Government document Every Child Matters cannot be developed. Most parents can see the benefit of health information being shared and it is likely that the most vulnerable children, whose parents desire to disengage from services, would be the ones asking for their children's data to be withheld.

  4.  Access to named patient data should be based on the individual's role and justifiable on the basis of need to know (for instance in order to deliver health care). There should be a clear audit trail and regular audits of who has accessed what data.

  5.  Basic demographic data (such as name, date of birth, sex, address, General Practitioner with whom registered and educational establishment attended) will need to be transferred form the national spine to set up the information sharing index (ISA), which will also carry the name of involved professionals (barring some specified exempt services such as sexual health services) and whether a common assessment framework has been carried out. Detailed specifications for the ISA will be available from the DfES.

  6.  If we assume that the delivery of care includes secondary uses of data such as commissioning and auditing services this should include monitoring of selected outcomes of key processes such as immunisation coverage, waiting times for treatment for disabled children and age at identification of severe hearing loss among many others. The data should be available subject to confidentiality agreements to agreed research projects. In some cases it may not be possible to obtain retrospective subject consent but if no harm is deemed likely (as for testing of anonymised stored blood samples) the research should still go ahead for the benefit of the entire population.

  7.  A comprehensive record available instantly throughout England is a dream worth working for but is beginning to look like a mirage with an ever receding completion date. It may be more realistic and useful to concentrate on developing an agreed summary electronic health record for children covering the child health promotion programme, the domains of the common assessment framework, the individual's current health problems and medication and then ensuring immediate transmissibility of such a summary. Further details can be requested as necessary, for example, it is useful to know a child has had an operation for squint but not so useful to have a blow by blow account of the operation.

  8.  In our view the delays in the delivery of the system are due to:

—  poor communication between IT specialists and clinicians;?  disregard for work that may have already been done in many clinical departments on their information needs;

—  a failure to grasp the complexity of the delivery of health care, especially for vulnerable groups such as children, patients with mental health and learning disability and where social care and education are intimately involved;

—  an unrealistic pace—clinicians cannot set aside seven whole days in the next two months (the current request for clinical involvement for LORENZO) to develop IT systems in the face of their current workload. Seconding clinicians to Connecting for Health (CFH) is only partly the answer as the clinicians still on the ground are reduced in numbers and still need to become involved;

—  an unrealistic aim—whereas transmitting x-rays is relatively simple using informatics transmitting complex clinical information and clinical judgements is more difficult. In our view transmitting summaries in an agreed format, developed nationally for each subspecialty, would ensure the availability of essential data.

  9.  Therefore work should concentrate on developing the summary templates and their messaging as the fist step for all areas. The only real success story of CFH so far is PACS; sending x-rays pictures relied upon a summary of the information in an agreed format (pixels for pictures plus a report) being messaged instantly across the entire network.

  10.  The development of the clinical record for children is seen as a major priority particularly after the Lamming report. The potential for timely and accurate information exchange could potentially save lives by alerting professionals to abnormal or atypical patterns of care access by parents and deficiencies in care delivery by professionals. There is high interest amongst paediatricians to develop this quickly and in a standardised way. However, the commercial interests of developers have the potential to slow this development unless appropriate sharing of intellectual property rights with NHS staff is facilitated. The DH and DFES need to have a close liaison in the development of a holistic care record that takes advantage of the developments such as ISA and CAF.

Dr Hilary Cass

Registrar, Royal College of Paediatrics and Child Health

16 March 2007