The working group then conducted a gap analysis that identified:
- Whether the data to support this information is accessible.
- What tools (including the analytic and front-end software) would be needed to support service users accessing the information they need.
- The urgency of collecting the data and creating the tools to support this information. This was judged according to whether early adopters could begin work with or without these tools available.
- Which of these tools currently exist and where they do not exist, whether there are existing plans separate to the whole systems integrated care programme to develop them.
Similar gap analyses were conducted for other stakeholders.
What tools are needed for service users?
The gap analysis on information needs for service users highlights first of all an issue with data availability. While most relevant data is currently recorded somewhere in the system, it is stored in separate silos (each provider’s systems) and there is no mechanism to share it to generate a complete repository with data from all care settings (apart from the localities covered by the Integrated Care Pilot Data Warehouse in inner North West London). There is a significant ongoing project to develop a comprehensive data warehouse that will sort and organise data right across all eight boroughs in North West London. The new data warehouse is on track to begin working from April 2014 and is discussed further in the next section.
The data in the warehouse can then be analysed and the results displayed using tools to support service users and Whole Systems Integrated Care.
Through the gap analysis, the following tools were identified as critical to support Whole Systems Integrated Care.
Access to own care record. To truly be empowered, service users should get access to their own care record, containing a summary of their care information from their care coordinator and the providers they have come in contact with. The individuals themselves might also contribute to their care record by adding information.
Personal budget tracking capability. Payments to individuals, to be used to independently purchase care from providers, are a common occurrence particularly in social-care. Service users should have the ability to track how much of their personal budget they have used and how much is left. The introduction of the "Dilnot care cap” (establishing that nobody should pay more than £74,000 for social-care in their lifetime) will provide an even stronger rationale to put in place the capability to track care spend by individuals.
"User engagement” capability. To help individuals take more ownership in their care and rely less on in-person interactions with care professionals, it would be useful to send them reminders and updates via e-mail, text message or mail at appropriate times (e.g., a timely reminder for an annual visit to the eye specialist). Delivering this information in an accurate way will require an informatics capability.
Communication channel with professionals. Given the context described in the previous paragraph, it will also be helpful for users to have an effective way to communicate remotely with care professionals, particularly their care coordinator. While such interactions could happen via telephone, a more sophisticated, online system should be considered.
Access to information online. As detailed in the gap analysis, the service user might need to get information on topics such as the services available to them, the performance of providers and the expected use of their personal data. All of this information could be delivered online, likely through existing websites. The informatics capability requirement is therefore less significant in this case.