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Data Sharing: A targeted strategy to improve sharing between hospitals

Dr Leigh Warren, Dr Jonathan Clarke & Lord Ara Darzi, from the Institute of Global Health Innovation (IGHI), discuss challenges faced around the sharing of medical information between hospitals

COMMENT FROM THE EDITOR: This article first appeared in the Jan/Feb 2020 edition of the NHE magazine. In that print article, the authors of the piece were mis-affiliated, not being correctly attributed to the Institute of Global Health Innovation. NHE apologises for the error.

Patients and healthcare providers both share the common frustration of important medical information not being available when it’s needed because it’s held at another hospital or care setting. Emails, phone calls or even faxes are often exchanged to obtain required records and many patients are sent for repeat tests and follow-up appointments that they wouldn’t otherwise need. These situations burden patients and providers, wasting valuable time and scarce resources, and can risk patient safety.

Despite regular anecdotes of poor data sharing affecting care, there has been relatively little robust evidence to assess the scale of the problem at a national level. The diverse settings and consequences of impaired data sharing mean estimating its economic burden is problematic. Furthermore, this burden is not shared equally around the country, as there are considerable regional and local differences in the structure of healthcare networks and care integration.

The digital revolution has long been touted as a solution to data sharing problems in healthcare, but most patients and care providers would agree that information technology has not yet materialised as the panacea that may have been envisaged. Costly efforts to better link-up care between providers and settings through programs like the National Programme for Information Technology (NPfIT) and care. Data have faced obstacles and widespread criticism, and both have been disbanded. There remain significant barriers to interoperability across the NHS. Systems and programmes to address this issue have emerged around the country in the form of shared care records, care information exchanges and patient-held records, but with varied uptake and use.

To better estimate the burden of impaired data-sharing at a national level, our recent study analysed hospital administrative data (Hospital Episode Statistics) to identify the frequency and distribution of patient movement between different NHS hospitals in England. We combined this data with the type of health record systems used in each acute NHS Trust to give an overview of the existing and potential interoperability between health record systems. Our analysis included 21 million patients involved in 121 million hospital encounters. We found that nearly 4 million patients moved between two or more NHS hospital trusts over a 12-month period between 2017-2018. Almost 1 in 10 hospital encounters involved patients attending a different hospital to their last encounter using a different health record system, highlighting the need for effective data sharing between hospitals⁽¹⁾.

Access to shared data across hospitals and healthcare providers can be critical in providing staff with necessary information and patients with the best possible care.

For providers and patients alike, this need is driven by the local context in which care is delivered and received. Our analysis found that the problem of interoperability varies greatly across the NHS in England. In an earlier study published in Nature Digital Medicine, we found significant regional variation in how often patients attended different hospitals on consecutive encounters. For example, consecutive encounters with different hospital trusts occurred up to 30% of the time in North West London, whereas in parts of Sheffield the rate was less than 1%⁽²⁾. Given this variation, a potentially costly or inconvenient transition to more interoperable systems may not resonate with providers who rarely need to share information with other hospital trusts, yet may be greatly appreciated by trusts which exist in a dense patient-sharing healthcare ecosystem.

Most hospital trusts that share large numbers of patients do so with a small number of nearby trusts. Of the 20 pairs of hospital trusts that most frequently shared patients in our analysis, only two used the same type of electronic health record systems. Only five of the trusts in these 20 pairs were still using paper records, indicating that most pairs of trusts that frequently share patients have already adopted different electronic health record (EHR) systems from one another.

If the NHS is to move towards real-time sharing of comprehensive clinical information between providers, it is critical that strategies for meaningful interoperability move up the agenda. It is clear that that hospitals across England do not exist in isolation, but instead are part of a dense network defined by the sharing of patients, and therefore clinical information. Insights provided by hospital administrative data can empower hospital trusts to better understand their position within the wider NHS healthcare ecosystem. In doing so, they can consider how best to share vital medical information with clinicians at hospitals that patients are regularly shared between.

While the cost to the NHS of the current lack of interoperability has not been quantified, anecdotal evidence from clinicians and patients alike indicates an overwhelming need for improvement. Centralised, ‘one size fits all’ solutions to the problem of healthcare information sharing have failed in the past and remain expensive

and politically contentious. Instead, adopting a regional approach to healthcare information-sharing, informed by network analysis using real-world data, allows solutions to develop at a manageable scale that fit local needs.

Ensuring that the right information about the right patient is in the right place at the right time is an ongoing challenge for healthcare systems around the world. Healthcare organisations in the NHS are, however, uniquely positioned in an international context to capitalise on the availability of good quality administrative data. Approaches that promote data-driven policymaking and resource allocation must be prioritised to provide high-quality, safe, connected care in the NHS.

References:

1. Warren LR, Clarke J, Arora S, Darzi A. Improving data sharing between acute hospitals in England: an overview of health record system distribution and retrospective observational analysis of inter-hospital transitions of care. BMJ Open [Internet]. 2019;9(12). Available from: https://bmjopen.bmj.com/content/9/12/e031637
2. Clarke JM, Warren LR, Arora S, Barahona M, Darzi AW. Guiding interoperable electronic health records through patient-sharing networks. npj Digit Med [Internet]. 2018;1(65). Available from: https://www.nature.com/articles/s41746-018-0072-y