Select Committee on Health Written Evidence

Evidence submitted by the British Association for Community Child Health (EPR 16)

  The British Association for Community Child Health (BACCH) is the largest paediatric subspecialty in the UK; we represent about 1,200 career grade paediatricians working in many settings such as health centres, clinics, schools and social care venues as well as traditional hospitals. We work closely with colleagues in other agencies, particularly education and social care and with other health colleagues including general practitioners and community nurses such as health visitors and school nurses. Our referral base is extremely broad and the spectrum of our work covers physical illness, learning problems, emotional health as well as psychosocial problems such as safeguarding and children in special circumstances. We seek to reverse the inverse care law by specifically targeting vulnerable children, carry out holistic assessments of health needs and help establish a multiagency network around the child and family. Many of the children we see have multiple problems NOT requiring admission to hospitals and better managed close to the child's home and school. We would like the Electronic Health Record to support our attempts at reducing health inequalities for our patients, whose manifold health problems are often compounded by economic adversity.

  The British Association for Community Child Health (BACCH) would like to make the following points specifically with regards to the needs of children and young people (CYP):

    1.  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.

    2.  Regardless of the complexity of information being held on the system, it cannot be in the interests of CYP 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 (ISA) supporting the concept of Every Child Matters cannot be developed. Most parents can see the benefit of health information being shared and it is, unfortunately, likely that it would be the parents of the most vulnerable children, wishing to disengage from services who would be asking for their children's data to be withheld. This would worsen the existing inverse care law and make, in particular, safeguarding children even more difficult.

    3.  Access to named patient data should be role based and justifiable on the basis of need to know (in order to deliver health care). There should be a clear audit trail and regular audits.

    4.  Basic demographic data (name, date of birth, sex, address, GP and educational establishment) will be need to be transferred from the national spine to set up the Information Sharing Index, which will also carry the name of involved professionals (barring some specified exempt services such as sexual health services) and indicate whether a common assessment framework (CAF) has been carried out. Detailed specifications for the ISA and CAF will be available from the DfES.

    5.  We assume that the term "delivery of care" includes secondary uses of data such as commissioning and auditing services and the use of data for public health purposes; this should include monitoring of selected key outcome and process measurements, eg immunisation coverages, waiting times for treatment of disabled children, time scales and results of looked after children's health assessments and age at identification of severe hearing loss (among many others needed to cover all the modules of the National Service Framework for children). 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 by an appropriate ethical committee (eg for statistical analyses), the research should still go ahead for the benefit of the entire population.

    6.  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 covering, for children, the child health promotion programme and the domains of the common assessment framework (CAF) as well as current health problems and medication and ensuring immediate transmissibility of such a summary; further details can be then requested; for example it is useful to know a child has had an operation for squint but not so useful to know the blow by blow account of the operation.

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

(i)  Poor communication between IT specialists and clinicians.

(ii)  Disregard for work that may have already been done in many clinical departments on their information needs.

(iii)  a failure to grasp the complexity of the delivery of health care, specially for vulnerable groups such as children, patients with mental health and learning disability, where social care and education are intimately involved. Referral sources and onward referrals for children cover a wide range of professionals in several agencies (health, social services, education, police, voluntary organisations) and are often multiple for the most vulnerable children, in order to set up a multiagency network and team around the child and family.

(iv)  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 CFH is only partly the answer as the clinicians still on the ground are reduced in numbers and still need to become involved.

(v)  an unrealistic aim: whereas transmitting X-rays is, informatically, simple, 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 anytime, anywhere.

  Therefore, in our view, work should concentrate on developing the summary templates and their messaging as the fist step for all clinical services. In fact 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 to recipients in distant places. 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 (eg repeated non attendance at health appointments and no access visits) and deficiencies in care delivery by professionals (eg adverse incidents). On a more positive note, there is high interest amongst paediatricians to develop this quickly and in a standardised way. The commercial interests of developers can potentially slow this development unless appropriate sharing of intellectual property rights of NHS staff is facilitated. It cannot be right that private informatics firms should seek to garner for their shareholders only the benefit they have obtained from the thinking processes of many NHS staff paid for by the tax payer.

  The DH and DFES need to have a much closer liaison in the development of a holistic care record that takes advantage of the developments such as ISA and CAF. Currently the CFH programme is heavily skewed towards so called "pure" hospital inpatient based health measures and this is particularly disadvantageous for vulnerable children where maintenance/improvement in health status is based upon interagency work usually occurring outside acute care units.

Dr Fawzia Rahman

Consultant Paediatrician, Derby City Primary Care Trust,

Dr Mitch Blair

Chair BACCH Informatics Working Group

on behalf the British Association for Community Child Health

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