Information-sharing and digital care records for integrated care

What is it and how does it work?

Health and care systems across the world are moving at pace towards digitised and linked health and care records. Citizens are increasingly expecting that information about their care is shared between appropriate professionals, and that they can share information easily themselves and on their terms.

NESTA 2021

Using electronic records to capture assessments, diagnostics, care plans and interactions with a person and their family are now commonplace within health and social care services. However, organisations tailor information systems to reflect their own context, aspirations and resources which can mean that important details on the needs and support of individuals cannot be shared digitally with other services. This hampers information sharing between agencies which can result in poor co-ordination and people being at greater risk. Tools for combining or linking individual digital records therefore have much potential to reducing such obstacles to better joint working.

Alongside sharing of information to support better care and treatment, digital approaches are being used in many other ways to improve health and social care. These include new opportunities for professionals and individuals to connect through video consultations, using artificial intelligence to support diagnosis, and the use of mobile apps and smart devices. The latter can help people to better understand their health and wellbeing and so take appropriate pro-active lifestyle changes and self-manage long-term conditions.

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    Digital health and care records provide the means for better care coordination and proactive approaches to care management.

    This is because they are accessible to all care teams involved in a person’s care, and because they’re available to, and travel with, each individual wherever they receive care.

    Digital care records support:

    • the identification and targeting of people who benefit most from integration
    • care planning tailored around the needs, strengths and goals specific to each individual
    • continuity of care for people moving through the health and care system,
    • and care coordination by multidisciplinary teams and professionals across care settings.

    In addition, joined-up working between health and social care services through data sharing eliminates duplication, including multiple assessments, resulting in a better care experience for service users.

    Digital innovation can bring significant benefits and support the integration of services.

    But it requires more than just replacing paper based processes with digital ones. It involves using technology to reimagine work processes, professional interactions and the engagement of service users.

    Better information exchange and greater digital access to shared health and care records can be expected to improve people’s experience of care as they move seamlessly through the system – only needing to tell their story once and with information safely flowing with them.

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How does this support integrated care?

Enhanced national digital channels will give people more control over their lives. They will be able to interact easily with different health and social care providers, and access more resources for meeting their health and care needs when and where they choose.

Department of Health and Social Care 2022

A successful [digital] Hub offers transparency for families, professionals, and practitioners, enabling effective joint working. The Hub is where a child or young person’s progress through the Education Health and Care Plan process is recorded, so parents, carers and professionals can follow the journey, add and view relevant reports and contributions, and see any decisions made.

Council for Disabled Children 2022

Alongside the potential benefits relating to professionals communicating more effectively, better capture and use of personal data can help to identify health and social issues at an earlier stage so that support can be provided to avoid a situation worsening to the point of crisis. Integrated record systems facilitate better continuity in care between settings and avoid the need for individuals and families to provide the same information to multiple professionals. Where people have access to their own records, this can help them to self-manage more of their care and can facilitate a better level of discussion and shared decision-making with professionals. Using individual data to build population level analysis supports the development of integrated pathways and can guide investment decisions. Such pooling is also helpful for evaluating the impacts of new interventions and identifying variations in quality and safety.

What are the enablers of effective information sharing?

Good technology is not enough for interoperability to succeed; relationships between staff and organisations are vital for success. Staff who do not work well together tend to control digital technologies and medical information in a way that hinders sharing and collaborating. We heard that leaders who prioritise building relationships across organisations view digital tools as an extension of these relationships which in turn helps interoperability.

King's Fund 2022

We need to work with citizens to design new ways to build an ecosystem of trust with transparent uses of data that put the citizen in control. If we get these fundamentals right, we can start to unlock the untapped value in health and care data.

NESTA 2021

Having an effective digital system and linked technologies which are fit for the expected purpose are clearly vital. This requires agreement between agencies as to the expected outcomes and a willingness to pool investment and for the long term. Even with the right infrastructure, it is unlikely that professionals will engage with the digital opportunities unless they understand the benefits and are confident in how to deploy the systems in their practice. There is also a need to review existing care processes to ensure that these are synchronised around the digital approach. Individuals must be sure that sharing of their personal data will lead to improvements in their care. This requires transparency over what is being proposed and the reasons behind it, and ensuring that related technologies are acceptable to the population who will be accessing them. Digital exclusion is a major issue and if this is not pro-actively addressed then there is a risk of further inequalities.

What is the evidence for outcomes and impact?

Big Data Analytics methods and practical applications have a tremendous potential to improve integrated care interventions with respect to better health quality and efficiency.

International Journal of Integrated Care 2022

Personal Health Records, in which service users have ownership of their care record, may support person-centred care in a more meaningful way, but there is little evidence that they promote better co-ordination and integration.

Journal of Integrated Care 2021

Research suggests that the public is supportive of the introduction of new technologies such as video consultations if they understand its purpose and see the technology as reliable and easy to use. Pooling of individual level data has been shown to support the tailoring of health and care plans through highlighting risk factors and enabling the development of population-based programmes. There is less evidence which confirms that digital approaches can lead to better co-ordination of care, but the dangers of poor communication are well established, highlighting that there are substantial benefits to be gained from systems which are better integrated.