While all eyes are on the National Programme for IT, another information project is starting to take shape which will affect health professionals across the NHS.
The project is the introduction of child indexes as a tool to help practitioners share information about children and to create an electronic safety net.
GPs, health visitors, school nurses and A&E staff are just some of the NHS workers who its likely will be expected to contribute to and use the indexes.
Section 12 of the Children Act 2004 gave the secretary of state the power to make regulations to require the establishment and operation of databases or index systems and a decision on implementation is expected by the end of this year.
The preferred approach currently being explored is to have 150 indexes, managed at upper tier local authority level with a "151st" system to coordinate and to manage cross-border issues.
The kind of information that is likely to appear on the indexes and that is outlined in the Children Act is the name, address, gender and date of birth of every child in the country between 0 and 18 years’ old.
A unique identifying number, possibly the NHS number, might also appear alongside the name and contact details of the parent with responsibility for the child, the name and contact details for school or other educational setting and the name and contact details of the GP and health visitor.
In addition the index would include name and contact details for other practitioners involved with a child so a professional can see who to contact if they wish to discuss a child’s additional needs. Further information which could appear, although the subject of some controversy, is an indicator of whether a professional has cause for concern about a child.
End of year target
The decision to set up children’s indexes of some kind has been in gestation for some time. The Victoria Climbie case and subsequent inquiry and report from Lord Laming, the Bichard report following the Soham Inquiry, the publication of the green paper Every Child Matters and the Children Act are all steps along the path that is likely to lead to an index by the end of this year.
In the autumn the government is due to make decisions about what the index or indexes will look like including details such as how many indexes there will be, what technology will be used, how they will funded, how children will be identified, how the issues of consent will be addressed and how and if practitioner concerns will be shown on the indexes.
The government has already made it clear that indexes are not intended to provide an integrated case management system, replace case record systems already under development such as the NHS Care Records Service or record statements of a child’s needs or observations about a child.
While national guidance is awaited 11 trailblazer areas representing 15 local authorities have received £10.5 million of funding to test new ways of working around information sharing including the development of child indexes.
One of those Information Sharing and Assessment (ISA) trailblazers which has done a lot of work with the NHS is based in Sheffield.
James Randall, ICT manager for Sheffield SafetyNET (the name of the Sheffield ISA) , says that their system went live in Sheffield last October last year. The index in Sheffield contains the name, address, gender and date of birth of every child in the city, with the relevant information pulled from three databases used by education, social care, and the database at Sheffield Children’s Hopsital. GP registration information from the Exeter system is also due to be added.
Randall told EHI Primary Care: "We chose the Children’s Hospital because we are not interested in data post-18 and the QMS database at the hospital links up multiple databases within the trust including the child health system, the PAS system and the disability index and also contains A&E information. So it was really a golden nugget of information."
Randall says the Children’s Hospital was also selected because it is not expected to be in the first wave of NPfIT system changes and therefore the database would remain unchanged for at least two years.
He adds: "We’ve been extremely lucky in Sheffield because we have had tremendous support from the local health care providers."
Issues of consent and confidnetiality are obviously vital. In Sheffield, health and social care professionals can have access to the system if they meet criteria for accapetance onto the system and have completed the SafetyNET training programme.
So far around 400 to 500 practitioners have been trained to use the system but Randall believes the index will only become useful when 1000 practitioners are using the system, a target he hopes to reach by the end of October. He says there will be a good proportion of health professionals within that number although probably not many GPs.
He adds: "From a practice point of view, it’s the other primary care workers within the practice who are more likely to use the system."
Randall says the time constraints on GPs is also seen as a deterrent to using the system and as a result SafetyNET may relax its insistence that the no-one else can look up information on behalf of someone else.
The consent model means that the basic information on the child is put on with implied consent with an opt-out available and widespread promotion of the existence of the index in Sheffield. The information about the fact that a professional is working with a child is only added with the informed consent of the child or carer involved.
"The big challenge is having staff external to the council having access to our database"
— Jill Clayton, Bolton Trailblazer scheme
Elsewhere in the UK trailblazers have been working on use of the NHS number and developing different IT solutions which will be evaluated as part of the plans for national implementation.
For some, such as Bolton Council, the idea of sharing information outside the local authority is still a big step to take.
Jill Clayton from the Bolton Trailblazer says its project has begun by including agencies within the local authority but hopes to expand to include geographical areas and take in NHS workers, in particular accident and emergency departments as well as primary care teams.
She says: "The big challenge is having staff external to the council having access to our database.”
Decisions that will have to be made nationally include not only the consent issue but also whether all information would be visible to all users of the index or whether access would be limited to a lead professional or a lead professional plus categories of user specified by the child or their carer.
Despite the size of the task, the work already undertaken proves that indexes are technically and operationally feasible and the government looks determinated to deliver on them with a commitment to set up such databases included in its election manifesto.
For those health professionals already struggling with the consent and confidentiality implications of the NHS Care Records Service it is one more thorny issue to add to the list.