What do service users need?

The vision for Whole Systems Integrated Care is that service users will be empowered to maintain independence and to lead full lives as active participants in their communities. This will require changes in the behaviours and activities carried out by service users, just as it will require changes in the behaviours and activities carried out by professionals.

"I can do all my confidential banking online and through an app on my mobile phone. Why is it that I cannot see many of my care records? Why are they stored on a computer I cannot access? It means I have to update my details using paper forms rather than being able to enter information myself. IT will be one of the most important ways I can become empowered.” - Service user

As part of these changes, service users will be supported to make more decisions, also regarding their personal care goals and how they will work to achieve them.

Successful decision-making is underpinned by good information. Service users will need information systems to help them understand their progress, their options and where they can get advice and support.

Through discussions with service users and other stakeholders, the following list of desirable future behaviours and activities by service users was created. Against each of these, the information needed to support these behaviours and activities was identified.

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.

• What information needs will the service users you care for have under your new model of care?
• What data and tools do you need to provide this information?
• How will you work with service users to develop new tools that meet their needs?

Case study/example

iTriage

iTriage is a health app that has been downloaded over 10 million times in America. It empowers users to make decisions about their care with features such as:

• Selecting symptoms and then identifying the nearest care providers that will help them respond to those symptoms
• Helping the service user pick the right place to go based on their insurance plan and information like average waiting times
• Scheduling appointments
• Storing their health records and saving information about preferred health care providers
• Saving medication and dosage information and even set refill reminders