Long term conditions framework: consultation analysis

14. Question 12

What new digital tools or resources do you think are needed to support people with long term conditions?

Introduction

The vast majority (78%) of respondents answered Question 12. Prior to setting out the themes identified from the responses to this question, some respondents reiterated points previously raised, such as:

• digital tools and resources need to complement not replace other forms of support – and ongoing efforts would be required to address digital poverty, exclusion, and accessibility challenges
• some people with long term conditions may lack awareness of existing digital tools and resources – more needed to be done to raise awareness of what is currently available and improve signposting to trusted sources of information and support
• the development of new digital tools and resources should be co-designed with individuals with lived experience of long term conditions (and organisations who support them) to ensure they were inclusive and accessible
• digital resources may become outdated, provide conflicting advice and information, and may not all be credible and trustworthy sources

The analysis then identified three themes, including:

• theme 1: there is a requirement for more integrated healthcare information, systems, and resources
• theme 2: additional digital tools and resources could be developed
• theme 3: existing digital tools and resources could be adapted or further improved and developed

Theme 1: There is a requirement for more integrated healthcare information, systems and resources

Many individual and organisation respondents expressed support for improvements in the integration of existing healthcare information, systems, and resources as a way to:

• support person-centred care and support
• ensure the coordination of care and support for people with long term conditions
• encourage better communication and collaboration between healthcare professionals (less siloed working)
• support access to real-time information and data – to share information and data more easily between healthcare professionals and to support earlier diagnosis, timely decision-making and referrals
• empower people with lived experience of managing long term conditions – increased access to their own information and data would give individuals more control over their health

These respondents typically suggested it could be beneficial to have an integrated app or IT system (for example, a website or online portal) that healthcare professionals and people with long term conditions could access. They said this could help people with long term conditions interact more effectively with health and social care services. For example, responses mentioned that a development such as this could include:

• access to medical records and notes from primary and secondary care providers, including test and lab results
• appointment booking and management services
• prescription ordering and management services
• symptom and condition trackers for identifying symptoms and triggers
• access to condition-specific advice and support, for example weblinks to relevant support services, including to the third sector
• access to online video appointments and telephone consultations

Many of these respondents referred to the NHS app in England and the Isle of Man, which acts as a hub for healthcare management, information and support – and suggested something similar could be considered for Scotland. Here, there was also reference to the Digital Front Door app which is currently in development in Scotland – with feedback that this app would ultimately create a ‘hub’ to help people interact more effectively with health and social care services.

The following respondent quote reflects the points raised under theme 1.

“There is a clear need for a unified digital platform that integrates medical records, self-monitoring data, appointment scheduling, health education, coaching, and access to peer support: all in one place. Such a platform should be designed to support both patients and carers, and include personalised risk factor tracking, goal-setting, and tools to empower people in managing their own health.” Public Health Scotland

Theme 2: Additional digital tools and resources could be developed

Some respondents felt that additional tools and resources could be developed to support people with long term conditions.

These respondents reiterated the types of digital tools and resources that help people with long term conditions access information, care and support, including:

• condition-specific digital tools
• self-management resources (for example, trackers and monitoring)
• online information and advice
• online peer support
• online appointment services (including booking and management systems)

These respondents highlighted a need for additional condition-specific tools and resources to support people with long term conditions to plug gaps in provision. They felt condition-specific digital tools and resources enabled more personalised and tailored support when compared to more general information and support.

Theme 3: Existing digital tools and resources could be adapted or further improved and developed

Some respondents felt existing digital tools and resources could be further improved, expanded and/or developed where they have been proven to work well. They suggested this could increase the accessibility, applicability, and usability of existing digital tools and resources as well as ensure online information and support was updated. Respondents were supportive of this approach as aspects of long term condition management were similar across conditions.

“Tools like myDiabetes and myCOPD have shown promise in supporting self-management for specific conditions. Expanding such resources to cover conditions like long Covid and ASD could provide tailored support, combining evidence-based guidance with user-friendly interfaces.” Individual respondent

“Examples of effective digital health interventions which can be built upon include NHS Near Me and remote monitoring for conditions like COPD and heart failure. These improve access, early intervention and empower patients especially in rural areas but require the digital infrastructure to be in place for both patient and healthcare professionals to access.” Royal College of Nursing Scotland (RCN Scotland)