29th July, 2019

Local health and care systems across London are working together – as part of the OneLondon programme – to improve how health and care services are delivered and experienced. In part, this is about making health and care information more consistent, more joined-up and more available to the clinicians, patients and families who need it.

OneLondon is one of the country’s first Local Health and Care Record Exemplars (LHCRE), designated by NHS England. The OneLondon LHCRE is a partnership of NHS organisations and local government across London, working together with citizens to transform London’s health and care services by joining up information to support fast, effective and safe care. The partnership comprises London’s five Sustainability and Transformation Partnerships (STPs), three Academic Health Science Networks (AHSNs), and the Greater London Authority (GLA).

There are significant benefits to be realised from joining up health and care information, for example, better integration of care, reduced risk of errors and better planning of services to ensure Londoners’ needs are met.

Whilst the benefits of joining up information may be obvious to many, we cannot assume that the case has been made more broadly across the population. It is therefore vital that we engage with Londoners to understand exactly what people’s expectations are; and to build trust, support and confidence amongst the public and professionals about the use of health and care information for individual care delivery and for a range of other uses.

Understanding public expectations of the use of health and care data

Understanding public expectations of the use of health and care data was commissioned by OneLondon to support development of its wide-reaching engagement programme. This report is authored by CurvedThinking and was developed in consultation with Understanding Patient Data.

Providing detailed insight into what is known about people’s attitudes and expectations of the use of health and care data whilst also identifying the gaps in evidence and current understanding, it makes recommendations for what meaningful engagement with patients, publics and professionals must look like to build trust.

The result is a unique contribution to a growing body of research which will not only inform OneLondon’s engagement process, but can support the development of the LHCRE programme nationally.

Read the full report.

Key findings

  • The public has a strong expectation that their information should be available to clinicians at the point of care to support their individual care. People are surprised to find that this is not routinely the case. OneLondon is expediating this work, and information should be available at the point of care across the Capital, with implementation over the course of 2019/20. This is great news for Londoners
  • Much more work is needed in order to understand what Londoners expect in terms of how their health and care information may be used for purposes beyond their own individual care, for example, quality improvement, service planning or research.
  • Historic research and evidence largely focusses on the anticipated benefits and associated concerns around the use of health and care data; we know too little about the way that people weigh-up these respective benefits and concerns in real-world scenarios.
  • Understanding public expectations about health and care data use, rooted in the context of reality, is vital to enable health and care systems to build trust and confidence with their local populations in this endeavour.

More information 

  • Amy Darlington, OneLondon Involvement and Engagement Lead: 07807 167363; amy.darlington@imperialcollegehealthpartners.com
  • Rebekah Tailor, OneLondon Head of Communications and Engagement: 07414 602666; rebekah.tailor@uclpartners.com

 

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