Long term conditions framework: consultation analysis

8. Question 6

How could the sharing of health information and data between medical professionals be improved?

Introduction

The vast majority (85%) of respondents answered Question 6. The analysis identified three themes, including:

• theme 1: digital infrastructure improvements
• theme 2: considerations when making digital infrastructure improvements
• theme 3: adopting a person-centred and multi-disciplinary approach

Theme 1: Digital infrastructure improvements

The vast majority of respondents expressed the need for digital infrastructure improvements to facilitate and enable improved sharing of information and data between medical professionals. Most touched on IT and digital infrastructure improvements in some shape or form in their response. Theme 1 covers:

• current barriers to the sharing of health information and data between medical professionals
• why improvements in the sharing of health information and data between medical professionals would be helpful
• what needs to change
• people with long term conditions should be able to access their own information and data

Current barriers to the sharing of health information and data between medical professionals

Most respondents noted the different barriers that existed to the sharing of health information and data between medical professionals. Points raised largely centred on fragmented systems and siloed working within and between organisations, as well as to outdated IT systems. In summary, these responses highlighted:

• that current systems do not communicate effectively – especially between primary and secondary care, and as noted above, respondents also said that this could lead to duplication of effort
• incompatible record systems across services – respondents said that this barrier could lead to delays, errors, and frustration for people with long term conditions, their families and for healthcare professionals
• fragmented systems meant that individuals often have to repeatedly explain their situation and retell distressing stories to different medical professionals
• the use of outdated IT systems – respondents said that this issue was inefficient for service providers and harmed patient care

A respondent quote that helps to illustrate these points are presented below.

“Current electronic records are chaotic, despite integration, NHS staff still use different records systems than social work colleagues (even within the same “integrated” team.” Individual respondent

Why improvements in the sharing of health information and data between medical professionals would be helpful

Many respondents highlighted the range of ways in which improvements in the sharing of health information and data between medical professionals would be helpful. Common points raised included:

• that people with long term conditions often required input from multiple specialists and services – sharing information would improve coordination across services and communication between medical professionals
• to facilitate faster and more accurate diagnoses and referrals to specialists and to support better clinical decision-making
• to ensure delivery of safe, coordinated, and person-centred care for people with long term conditions – for example, respondents said that improved information and data sharing could maintain continuous, personalised care pathways, reduce the risk of medication errors or duplicated efforts, and ensure that no critical information was missed during transitions
• to empower people with long term conditions – improved information and data sharing could support greater self-management as well as help to build trusted relationships

What needs to change to facilitate improvements in information/data sharing

Many respondents provided suggestions for what needs to change to enable easier sharing of information and data between medical professionals. Some responses were framed in line with responses to Question 4, namely support for a ‘digital front door’ approach or a ‘once for Scotland’ digital approach. Other recurring themes included improvements/expansion to the NHS Inform and Right Decisions platforms as mechanisms to support improved information sharing.

Many respondents called for investment to establish a secure single, national, fully interoperable digital system/electronic patient record accessible across all levels of care – primary, secondary, tertiary, and community.

People with long term conditions should be able to access their own information and data

Some respondents emphasised the equal importance of people with long term conditions being able to access their own information and data to improve transparency and to (re)build trust with healthcare services.

Theme 2: Considerations when making digital infrastructure improvements

Many respondents highlighted wider considerations around digital processes, procedures, and protocols, as well as to culture and resources. The main points included:

• ensuring robust data security – including data sharing agreements, protocols, and consent
• putting in place effective processes and protocols to help ensure effective and improved communications and information sharing between medical professionals
• the involvement of medical professionals in the design and testing of any new systems – as well as consideration of workforce development and training requirements
• embedding feedback on patient experience – to help measure whether there have been improvements in the way that information and data is shared
• ensuring consistency in information and data that is routinely collected and reported on

Theme 3: Adopting a person-centred and multi-disciplinary approach

A small number of respondents, primarily individuals, also said that adopting a more multi-disciplinary or whole-person approach to the provision of treatment, care, and support for people with long term conditions could facilitate improved information and data sharing between medical professionals. Such an approach was considered particularly helpful for people with co-morbidities. Related points raised included:

• the importance of condition-specific education
• continuing professional development sessions for healthcare professionals to aid and support a person-centred approach