Sharing information about an individual child is one thing, but sharing data about all the children in your setting, with a health visitor for example, is quite another. This is an issue which has been long felt by local authorities trying to manage large-scale data sharing. One current example with which councils up and down the country are wrestling is the Integrated Review.
As Jean Gross, co-author of Information Sharing In The Foundation Years, points out, ‘Health visitors (HVs) already have information on all children coming up to age two, but won’t automatically know which early years setting they go to. Practitioners should let HVs know who they have, who is coming up for the review. I can see no way myself that this contravenes any data protection legislation.’
However, the rules around whether parental consent is needed for this are not clear. Hackney Council asks parents’ consent to pass on name, gender, date of birth and postcode of children in early years settings to the relevant health visiting service.
A Department of Health spokesman refers back to the EYFS. ‘Regarding the legitimacy of early years staff stating that “child X attends a specific setting and is eligible for an Integrated Review”, i.e. whether this requires parental consent or not, I would go back to the EYFS framework which states that “early years providers must have the consent of parents and/or carers to share information directly with other relevant professionals”.’
Ms Gross, whose Government-commissioned review highlighted the ambiguities of existing information sharing guidance which allowed ‘myths to develop’, says that this was ‘misinformed’.
She adds, ‘I cannot imagine any reason in law why, when government is expecting an Integrated Review at two, a setting should not liaise with the health visiting service to let them know the names of children in their setting who are eligible for the review – so that they can then plan together who will do what and when in order to carry out the review. I do not believe that sharing this very basic information requires explicitly seeking parental consent.
‘As a practitioner, I would let parents know I was in contact with the health visiting team, not because any data sharing statute says so, but because it is good practice to explain things to parents and check out that they are happy and confident about what will happen. The only exception to this general rule is of course those few rare cases where safeguarding is an issue.’
Once the review has taken place, information may also need to be shared further. Islington Council’s approach to this is to have standard wording on its Integrated Review form, which has to be signed by parents, stating that ‘London Borough of Islington and Whittington Health will handle the information you have provided in line with the provisions of the Data Protection Act’ and ‘any personal information will be held in confidence with only the necessary people able to see or use it’, while information may be shared ‘where necessary with other bodies responsible for administering services to children and young people’. Islington is something of a flagship model; one of the few boroughs where health visitors and early years professionals meet in the same room at the same time to carry out the review together. This is useful not least because it circumvents the need for information to be emailed.
Tracey Smith, a team leader in the EYFS team, says, ‘The system of having all the same people in the same room at the same time is not one that all councils are able to do – it is resource-heavy, but we feel if offers the best possible service – the gold standard.’ Each early years setting in Islington also has a named practitioner from the health team, as well as joint training for health and education practitioners.
Yet even here the system can be incredibly clunky. According to Ms Smith, some health visitors have to compile paper lists of the names of children who need the Integrated Review by visiting a setting in person, because even aside from navigating the consent issue, many nurseries use non-secure webmail email systems, which means this information can’t be emailed. ‘Sometimes it means they do not get information in time for it to be useful.’ She adds that this might mean that if someone is absent, ‘there’d be no-one available to go to a setting and so no Integrated Reviews will happen in that setting.’
Another issue can be that IT systems belonging to different agencies don’t always assimilate with each other, or export data. Health professionals commonly use software that ‘doesn’t allow you to extrapolate information’, Ms Smith adds. This means it is not easy to say how many reviews have taken place in the borough. ‘For the first tranche of data to DH [on Integrated Reviews] we had to go through manually and count up. It took a day,’ she says. To get around this, she says that she is in talks with her IT team to adapt existing data collection systems used to gather information about funded places, so that the number of Integrated Reviews can be more easily ascertained.
Birth data
There is also a lack of clarity at a local level about what information can be shared, which means that ‘no’ is often seen as the safest option, says Ms Smith. ‘There seems to be a difference between what people say at a high level and a local level. People think ‘we will say no because it is safer and then think we won’t have to worry about it.’
Ms Gross says this means information governance models in health services ‘can place a stress on confidentiality that goes way beyond sensible sharing of information’.
One example is sharing of live birth data. The data sits with the health and social care information centre and some local authorities have set up individual agreements to receive it, but this is ‘a long and complicated process’, says Ms Gross. This means children’s centre employees are often unable to contact families to offer their services, especially early on in the life of the child, when they are most needed.
As a result, she says, ‘We are looking for a situation where we don’t have 152 local authority agreements but automatic transfer, with conditions about how the data is used.
‘We have overcome problems of “is this legal?” and “can we do it?”. We now just need a technical solution – that requires a project, which requires money.’
However, she says that having asked for the latest position, ‘The DH do not have clarity on how much, if any, of the Spending Review money will be allocated to sharing live birth data in 2016/17 and beyond.’ She adds that she wrote in November to request a meeting with the Minister of Life Sciences, George Freeman, and received a reply in March, apologising for the delay due to ‘administrative oversight’. She says, ‘He writes that no money has as yet been identified to fund the necessary project work on the automatic transfer of live birth bulk data from the DH to local authorities. He also declined to meet me “at this time”.’
The confusion over legality is such that in some cases, a partnership agreement which was used to share data has been revised and now the bulk data is not automatically passed on and parents consent is asked for, says Ms Gross. Yet this was unnecessary, she says.
A DH spokesman confirms, ‘There is no legal barrier that prevents local NHS organisations from sharing birth data with local authority children’s centres where that data will only be used for direct health and care purposes. Parents should be informed about the information sharing through patient information materials made available by each organisation (e.g. information leaflets, posters in waiting areas, etc).’
He adds though that while parental consent was not explicitly sought on a one-to-one basis, ‘information should not be shared where the parent objects’.
He says, ‘There may be some circumstances in which an objection could be overridden (e.g. where there are concerns that the child is at risk of significant harm) – and decision to share information against the wishes of a parent would need to be consistent with the Working Together guidance.’
Solutions
Ms Gross is keen to stress that much good practice exists and says joint projects or training are a good way to build trust between different agencies. Sometimes even simple co-location can make a big difference. In Burnley, the health visiting and children’s centre team are co-located and have developed one set of shared records for each child. Where joint commissioning exists, this can also make a real difference.
In Brighton and Hove, for example, the health visiting service has been seconded into the council and works within the children’s centres. Children’s centre teams are led by health visitors, while specific support services are targeted at areas in need, teenage parents are supported by named health visitors and early years visitors, while traveller and asylum-seeker families are supported by a specialist health and early years visitors. This has seen improvements in breastfeeding and obesity rates and a rise in the percentage of disadvantaged children achieving a good EYFS score.
According to Ms Gross, ‘Local authorities have the opportunity to commission a single plan covering both health and early education and childcare, from conception to five years – and it’s happening in some places.
‘They could decide what does good information sharing look like and make some standards for it. They could say for funded places, “You won’t get it unless you adhere to these.”
‘One approach at a children’s centre is for the team to say to a parent, “Would we be able to share information within the team?”
‘If we had a government department that was responsible for birth to five and their families, that would be wonderful. Currently we have three government departments involved.
‘In terms of government cuts, there is a lot of anxiety within health about that. Will local authorities be so cash-strapped they can’t keep up good practice now that they are responsible for commissioning the work of health visitors in the early years? They currently have to provide certain reviews at certain ages but there is still a lot of uncertainty about the future of this very vital service for children and families. It breaks my heart to think any of that great work might disappear.’
More information on best practice will be in the next part of the series in the 18 April issue.