Provision of Digital Services for Co-Managed Care

Personal Health and Care Records (PHCR)

PHCRs focus on the user experience/interface supporting literacy, discovery, navigation, dialogue, decision making, and care planning. Importantly, they usually work across conditions, groups, and services. They can offer a method to unify the guidance, alerting, messaging, and data feeds from other data-sharing infrastructure to create a more coherent, multi-purpose interface for citizens with multiple needs. A PHCR may support discovery of other digital applications or services and may act as a launch point into these additional services. A PHCR can also help citizens share essential information with a broader support network, like family and carers, if they choose to. Overall their purpose is to enable more holistic care and more active co-management by the citizen. Broadly, a record is a PHCR if; it's secure, usable and online; it's managed by the person who the record is about and they can add information to their PHCR; it stores information about that person's health, care and wellbeing; health and care sources can add information to the PHCR (though the PHCR may not be the ultimate destination for the data storage).

Health Data Exchange (HDE)

Cloud infrastructure that focuses on citizen generation, reuse, and control of personal data for sharing with health services. The HDE provides common data sharing 'plumbing' to support the integration of new patient-professional co-management applications, devices, and stores. For example is may support integration with consumer wearables (e.g. Fitbit), medical devices (e.g. ventilator, blood pressure cuff) and self-management applications (e.g. diabetes, weight management). It can provide common identity, consenting and data sharing capabilities so that a citizen can consent to any connected application sharing data with any other connected application. It might already integrate with a range of applications and devices, and / or with clinical records and offer third parties the reuse of these platform level integrations.

Personal Data Store (PDS)

Cloud infrastructure that supports citizen-controlled storage and exchange of personal data and identity assets safely, securely, and straightforwardly. A Personal Data Store (PDS) allows users to have complete control over and reuse their data as they move between services and sectors. Other platforms or applications can access a PDS through a suite of publicly available (but governed) APIs. The PDS provides a 'single source of personal truth' to empower the user and reduce the effort and cost for individuals and their services. The PDS does not necessarily store all data but is used to harmonise access to and reuse of data so that it feels to users like a single record. The PDS does not replace medical records held in Clinical Data Repositories or equivalent systems elsewhere, but the PDS could integrate with these systems to empower the citizen further. This method (called an Attribute Locker) is the Scottish Government Digital Identity Programme's favoured approach for identity asset management across the Scottish Public Sector.

Remote Monitoring Services (RMS)

Remote Monitoring Services (RMS) are the process of using technology to monitor patients outside of a traditional care setting, such as in their own home, or care home. Using symptom trackers, monitoring devices, portals or patient dashboards, together with remote consultations, enables patients to maintain a holistic view of their wellbeing through the tracking of disease progress whilst alerting clinicians to any deterioration in their condition.

RMS is the use of digital technologies to monitor and capture medical and other health data from patients and electronically transmit this information to healthcare providers for assessment and, when necessary, recommendations and instructions. RMS aims to help citizens keep healthy, allow older and disabled individuals to live at home longer and avoid having to move into skilled nursing facilities. RMS can also serve to reduce the number of hospitalisations, readmissions, and lengths of stay in hospital — all of which help improve quality of life and contain costs.

Care in place / independent living

Existing health and social care pressures have been exacerbated by Covid-19 and there is a rising need for community based social care services to support personal independence and prevent admissions / support discharge from hospital. Multi-agency responses are often needed with largely paper based and limited sharing of data across these groups when assessing, coordinating and joint planning to support the individual. Joint assessments are resource intensive and often a lack of awareness / access to alternative support mechanisms results in more reactive and costly and methods being required.

The aim is to enable a new ability for citizens, their informal circle of care and professionals across agencies to use digital tools to created shared care assessments, timelines, and plans. Social prescribing targeting more preventative and holistic care can be enabled by providing digital navigation and discovery tools to support both individual and professional decisions and providing tools to support discovery and navigation around the use of personal budgets / self-directed support and meet needs in a more responsive manner.

Mental Health and wellbeing

The challenge of mental wellbeing is becoming an increasing issue in most developed societies across the world. There are increasing numbers of people isolated or lonely, exacerbated by the pandemic and especially problematic in rural communities. The rise in lifestyle related ill health and associated pressure on health and care services and the lack of connectedness between digital self-management applications and NHS services.

There is an opportunity to enable citizens to share their activity, lifestyle, mood, and other wellbeing data through use of new digital therapies (e.g. online Cognitive Behavioural Therapy), which are increasingly available. Digital technologies offer the opportunity for increasing access to digital services and accessing this kind of wellbeing support can be normalised, discrete and not carry with it the same kind of stigma as has been the case before. This will enable citizens and their informal circle of care to connect using digital tools to support communication, peer support and entertainment, with the use of digital navigation and discovery tools to support both individual people to find support and opportunities to connect with other people.

Smart Housing / Communities

There are growing pressures on health and care services because of the ageing population. Many of their needs are not acute, or do not start this way, with many older adults needing support to stay independent in their own homes. In parallel there are increasing numbers of people isolated or lonely, exacerbated by the pandemic and especially problematic in rural communities.

There is a new ability to equip homes with digital technologies – either on the consumer side – e.g. voice assistants and smart heating, or on the independent assisted living market – e.g. tracking activities of daily living and identifying trends. In both cases this can help to identify problems early to allow proactive steps to be taken to retain independence. This will enable citizens and their informal circle of care to connect using digital tools to support communication, peer support and entertainment, with the use of digital navigation and discovery tools to support both individual people to find support and opportunities to connect with other people.