Long term conditions framework: consultation analysis

13. Question 11

What digital tools or resources provide support to people with long term conditions?

Introduction

The vast majority (83%) of respondents answered Question 11. This section covers how consultation respondents answered this question and then identifies three broad headings, including:

• theme 1 - there are a large and growing number of digital tools and resources available
• theme 2 - digital tools and resources benefit people with long term conditions in a range of ways
• theme 3 - digital tools and resources should not be the only way people living with long term conditions can access support

How consultation respondents answered this question

Some respondents identified the range of existing digital tools and resources that provide support to people with long term conditions. Further, some respondents highlighted issues that may arise from the use of digital tools and resources, such as digital poverty, exclusion, and accessibility challenges.

Others identified digital tools and resources which are not currently available in Scotland, but which could support people with long term conditions. These responses focused on: good practice examples from elsewhere (such as the new NHS app in England and the Isle of Man); as well as other suggestions for digital tools and resources which could support people with long term conditions. These points have been described at Question 12 and have not been covered in this section.

Theme 1 - There are a large and growing number of digital tools and resources available

The vast majority of respondents highlighted the many and varied digital tools and resources that people with long term conditions use. These respondents noted that the availability of digital tools and resources has been increasing, especially since the pandemic. Here, respondents emphasised that digital tools and resources played an important and valuable role in supporting individuals with long term conditions, but that they did not suit everyone.

The main points included that many respondents:

• provided examples of condition-specific digital tools and resources such as: trusted NHS and third sector websites, platforms and apps (for example, My Diabetes My Way, long COVID handbook, and My FND); online peer support groups and forums; online self-management tools, resources and tips; and health monitoring tools that could be used at home (for example, glucose monitors for people with diabetes) – these tools were considered useful for more personalised and tailored support
• highlighted other general digital tools and resources such as NHS Inform, Right Decisions and Waiting Well; self-management tools and trackers (for example, Sleepio and symptom trackers); online consultations, booking systems, virtual appointments, and telephone consultation services; home health monitoring tools; and smart home technologies to simplify daily routines (for example, smart plugs and video doorbells)
• identified challenges with digital tools and resources including: the extent to which all digital sources were credible, trustworthy, and up-to-date; the potential for conflicting information and advice; a lack of integration between digital tools and resources and personal health records/data; and the wide variety of digital tools and resources available could lead some individuals to feel overwhelmed and unsure of the best option for them

Respondent quotes to illustrate these points are provided below.

“Online peer support forums and survivor networks such as Sudden Cardiac Arrest UK which offer community, reduce isolation, and empower individuals to share experiences and coping strategies – a key element of holistic recovery.” Resuscitation Council UK

“The digital landscape for long-term conditions support lacks coherence and standardisation across Scotland. While some excellent tools exist, they operate in silos without integration into broader care pathways… Integration between third-party tools and NHS systems remains poor, limiting their clinical utility.” Individual respondent

Theme 2 - Digital tools and resources benefit people with long term conditions in a range of ways

The majority of respondents said trusted digital tools and resources were ‘critical’ and ‘vital’ for supporting people with long term conditions and identified the many and varied ways that digital tools and resources could benefit people with long term conditions. Common points raised included that digital tools and resources:

• allowed people who may struggle with their physical health and mobility have access to online consultations, and digital support
• could be convenient for people with long term conditions that live in rural and island areas – for example, those who may otherwise have to travel long distances or face transport costs to access medical and non-medical services
• such as online peer support provided opportunities for people with similar conditions to come together to share experiences, get mutual support, and reduce feelings of isolation
• could support symptom management by providing a way for individuals to track their symptoms, mood, identify potential triggers, manage their conditions, and reduce the number of GP or hospital appointments
• such as digital patient portals gave individuals access to their personal health records, allowing them to see lab results, manage appointments, book appointments, manage medications and contact clinical teams – reducing the administrative burden and supporting greater self-management
• such as remote monitoring technologies (for example, wearable health monitors) provided real-time tracking of an individual’s condition, symptoms, and/or medication – allowing for supported home-based care and proactive clinical interventions
• encourage independent living by simplifying daily routines (for example, through the use of smart home technologies) and allowing people to live independently for as long as possible

Theme 3 - Digital tools and resources should not be the only way people living with long term conditions can access support

Many respondents said digital tools and resources should not be the only way people living with long term conditions can access support. The main points raised were that:

• barriers to accessing digital tools and resources included digital literacy (ability to use digital technologies independently), digital accessibility (digital tools may not be designed in an inclusive way), and digital poverty (range of costs associated with accessing digital tools and resources)
• barriers could be disproportionately experienced by older people (who may lack the technical skills and confidence), people who live in rural and island areas (due to connectivity challenges), and people with disabilities or certain long term conditions (who may rely on accessibility technologies such as screen readers, closed captioning and hearing-aid compatible devices)
• some respondents reiterated that digital tools and resources need to complement not replace other forms of support to ensure existing health inequalities were not exacerbated