UK Ministry of Housing, Communities and Local Government (MHCLG) 
Exploring ways to record children and young people's health data electronically to reduce cost, both financially and socially.
The London Borough of Richmond upon Thames, the Royal Borough of Kingston upon Thames and The Royal Borough of Windsor and Maidenhead own an organisation called Achieving for Children. Achieving for Children is contracted to deliver statutory children’s social services on behalf of the three Local Authorities.
Through consultations with professionals, young people and partners we have identified a common issue that keeps arising. Young people’s health data is not stored in one place and is paper-based which makes it difficult for professionals, young people and their families to have an in depth understanding of a young person’s health journey as paper documents are often lost or forgotten. The way health data is stored also makes it almost impossible for young people to understand their own health and feel empowered to be the driver of their own health in the future. Empowering people to lead their own health journey is also a key feature of the NHS long term plan.
Children and young people have interactions with many health professionals, services from birth to 18. On average a child may come into contact with over 30 health professionals throughout their first 18 years of their life and over 50 if they are in care such as foster care or a residential home.
Having a digital overview of a young person’s health from 0-18 would enable professionals to get a single view of health history rather spending time gathering information from varying sources, which are often paper based. Also causing the problem is the documents being hard to share for multi-disciplinary input when they are paper based and data held by GP is hard to obtain and not in line with recent immunisations.
The cause of the problem is that 20+ years ago it was usual for all data to be paper based and children’s social services sit slightly behind the digital curve, mainly because of the recent cuts to services and the focus having to be on frontline provision rather than digital support functions.
Our idea is dependent on health services inputting the data onto a digital platform, the idea has been driven by the CCG so there is full recognition within health that this is of high priority. It would support young people understand their journey fully once they make the transition into adulthood and fill in a lot of pieces of a puzzle for example if they spent time in foster care or have been adopted.
Our assumption around the problem is that ‘it is seemingly more and more difficult for professionals to get a clear understanding of a child or young person’s previous health experiences because so much information is paper based such as a paper based health passport’. This assumption has been fed to us by a range of practitioners, young people, partners and parents. After speaking to other Local Authorities this is an issue that every Local Authority is facing and therefore a national approach in the future could be possible and incredibly beneficial.
Current tools to record information are paper based but our idea if following in the digital footsteps of other initiatives such as having Local Offer sites, digital information for care leavers and digital feedback sites and initiatives.
The success of the project will be dependent on the information we are able to collect and share. The research of the discovery phase with be led by a project office, Nada Hassanatou who has 8+ years experience of working in education projects including supporting the build of a chatbot on our Local Offer website and implementing voice recording technology across Achieving for Children.
The three Local Authorities working together on this are perfectly placed to work on this together as they all commission Achieving for Children to deliver their children’s social services. Nada already works across all three Local Authorities and therefore already has great relationships with the stakeholders who will need to be involved in this project. Nada is also already employed within Achieving for Children and therefore we can begin the discovery phase immediately.
Our research will aim to find out who our uses are and what they are trying to do, how they currently do it, the problems they experience and what users need to achieve their goals.
We will:
- Capture user research questions and then use ‘researching user experiences’ method to help answer these questions
- Carry out contextual research and observation
- Create a user experience map
- Use in depth interviews as case studies
- Construct small working groups
- Carry out remote research with partners, young people, parents and other Local Authorities that have this issue
The NHS’s long term plan focuses on empowering people to understand and take control of their health and to also make digital health services a mainstream part of the NHS. People not being able to access information digitally is clearly a huge cost to the public sector.
The cost of the issue is largely financial but there are also emotional and mental costs associated with letting children, young people and parents have access to health records. It creates a sense of trust and with more information, more choice and control can be had.
To fully understand the financial cost, which we estimate to be millions nationally we will use 9 case study examples (3 in each Local Authority) of different types of health information and the cost of retrieving the information across different scenarios and ages.
To articulate the problem we have been experiencing along with other Local Authorities anecdotes, if a young person at 16 who is in foster care loses their health paperwork, which is very common (e.g. paper health passport) when moving to a new foster home but is also referred to CAMHS for mental health support. When the support begins the mental health practitioner may take up to half a day to locate and understand all of their health records, especially if they are particularly long and complex. It means the young person starts may have to wait for medication or for their next appointment and the problem could escalate in the meantime.
This issue applies to all districts and authorities that deliver services to people. Considering the future, if successful, this solution could support anyone that has in the country.
In summary the main costs are:
- Having to chase up information on a child or young person’s health journey from a range of other busy, hard to get hold of professionals
- The stress of losing paper based health data
- Data protection costs of paper based information being lost
- Cost of individual practitioners not being able to collaborate on the same document leading to more administration and support costs
- Lack of awareness and identity of their health records leading to increased mental health difficulties and lack of empowerment and control
- Financial cost of sharing paper based information with other Local Authorities if the child/young person moves borough
We believe the benefit of this discovery phase project is that the project will operate across three Local Authorities who are already working together so closely. With that in mind, the lead contact for this discovery phase also already works across the three Local Authorities and therefore already has contact and understanding of young people’s needs in the three boroughs. We regularly use google hangouts for progress meetings, we voice record meetings and upload the minutes and we use google documents which allows us to collaborate more efficiently.
We will set up a project steering group to include representatives from the technical teams, the three local authorities, young people, parents, the CCG and health professionals and local partners. We are well versed at delivering projects such as this across the three geographies and therefore have rigorous tried and tested governance methods. We will use the Government Digital Service agile methods guidance to shape our approach.
We feel very ready to run this project as it has been a pipeline ambition for nearly a year now once we had secured external development funding.
We will need support in creating a digital tool once we have researched the issue and therefore will access the government digital service suppliers list as well as information on the developers we currently work with.