What is an integrated care record?
“I think the general public assumes that the NHS is a highly integrated service so that when you visit your GP and discuss your symptoms which then results in a referral to your local acute or community hospital, that the information that is entered by the GP into the primary care system is then available to the clinicians and nurses in the hospital. Unfortunately for a whole host of reasons, not all of them technical, this is not the case and in fact patient information is stored in ‘silos’ so that it is very difficult for a care provider using a patient record system in one organisation to see information that is stored in a patient record system in another organisation, even if there is a legitimate reason for doing so that will improve the patient experience and improve clinical safety. In some countries, e.g. Sweden, a single electronic patient record is rolled out to all healthcare providers in a county so that they all share a single view of the patient record. In the UK, this ‘one system for all care’ approach will never work so in order to provide the same view, integrated care records have come about to extract data from the disparate systems into an overarching longitudinal patient record that can be viewed by care providers with a legitimate reason for doing so. There are different ways of implementing an integrated care record and up until recently, the complexities around information governance have favoured a federated approach either using portal technologies or a document paradigm such as IHE XDS. This approach bypasses the issues around the creation of additional databases and meets the human actor use cases but it relies on the human interpretation of the data presented and there are issues around data quality and sematic interoperability so the integrated care record isn’t machine readable. The next step and in order to gain the real benefits of technologies such as machine learning and artificial intelligence, an instantiated integrated care record is needed that consists of high quality structed and unstructured data. This is more complicated to achieve.”
Where did the need for integrated care come from?
“Global healthcare systems are under increasing pressure due to aging populations and the increase of long-term conditions such as cancer, diabetes, stroke and dementia. This is putting an ever-increasing strain on general practice and emergency services which is typically where such patients present themselves. Acute hospitals are seeing an increase in unplanned admissions which has the knock-on effects of cancelled elective admissions, stacked emergency departments, reduced income, increased waiting lists and resource inefficiencies. Delivery of care in this manner is therefore sub-optimal for the patient and for the healthcare provider. In order to meet these changing demands, new models of care are required that are centred around the patient and deliver an integrated package of care focused on wellness and prevention. In order to deliver such care models, a longitudinal 'cradle to grave' care record is required to support processes through two main functions. Firstly, to act as a single source of truth at the point of care, including integration with apps and wearable devices; and secondly to facilitate advances in artificial intelligence and machine learning that can be used to identify cohorts of patients at high risk of needed emergency services in order to deliver preventative measures such as monitoring and treatments.”
What do Stalis provide in this market?
“Stalis are recognised industry experts in NHS health and care data and our core product suite CareXML is a range of tools that deliver data quality assurance, data extraction, data transformation and data integration built around an integrated care record. The CareXML technical architecture supports the full requirements of integrated care so as well as the CareXML Shared Care Record, which gives enables the user to view the longitudinal patient record through a web portal, it also supports the rapidly expanding app market, wearables and medical devices plus supports legacy data thereby enabling the richest possible data source for analytics. Unlike some of our competitors, Stalis solutions are built on open standards supporting documents (IHE XDS), open APIS (HL7 FHIR) to integrate with current solutions and crucially the integrated clinical data is persisted in openEHR so that our customers are not locked in. We believe that the data being collated belongs to the citizen and the NHS and therefore must be stored in vendor neutral format so that the NHS is not be held to ransom by vendors to access the data. The CareXML product suite addresses the issue that data in the NHS, and in health and care in general, is complex, fragmented and generally of poor quality. We also believe that to truly deliver new models of care, an open digital healthcare platform is required and all of the CareXML tools help NHS organisations unlock the value of their data, currently in all of the various silos, and move this high quality data into secure Cloud in preparation for this.”
What are the benefits of an integrated care record?
The benefits of an integrated care record include:
How did the partnership with AIMES come about?
“Stalis were looking for a hosting partner and after talking with several of the larger hosting providers that work across multiple sectors including healthcare I was recommended to speak to AIMES by a trusted friend. I was immediately struck by the level of knowledge that AIMES’ CEO Dr. Dennis Kehoe had about the healthcare market and it was obvious that there was a shared ethos and vision between AIMES and Stalis about the importance of data to the NHS and healthcare in general. AIMES’ focus on the safe and secure storage of data coupled with Stalis’ focus on the quality and integration of data is a very strong value proposition to the NHS. In addition, both organisations have developed strong partnerships with other complementary solutions and Dennis and I both felt that we could provide a true ‘best of breed’ portfolio approach to the data integration challenges facing the NHS. Our approach is more flexible and suited to individual UK health and care organisation’s requirements than the solutions offered by the large US vendors. The fact that AIMES is a spin-out of the University of Liverpool and I am a Computer Science graduate from Liverpool was the icing on the cake!”
What are your predictions for the integrated care record space?
“Well even with the political uncertainty in the UK at the moment, I think it’s a given that Integrated Care Systems in some form or other are essential for the survival of a ‘free at the point of care’ NHS. Integrated care implies the integration and sharing of data so I think that the will be an increased demand for integrated care records going forwards. The exact form of these integrated care records is yet to be decided and in the UK at the moment. There is lots of great work being done with a variety of technologies and AIMES/Stalis are seeing this lack of clarity at first hand in the variation technical architectures in the LHCRE tenders. At this point I would say that the majority of the integrated care records that are live are based on proprietary standards as these are well referenced and have been shown to deliver benefits. However, there is a growing demand from the NHS for greater choice, transparency and empowerment to use its data and to not be beholden to vendors to be able to access that data. As a result, we are hearing noises from the centre about enforcing open standards and open APIs. However, past experience has shown that this is extremely difficult to do. That said, we are seeing an increase in the number of integration projects that are using open standards such as IHE XDS in Lancashire, Liverpool and London, FHIR in Somerset and openEHR in Yorkshire. I think the initial focus of these projects has been on ‘human readable’ integrated data so data inconsistencies and quality issues have been a lower priority as a human being is still able to interpret the data and make an informed decision. The next step will to do deliver ‘machine readable’ integrated data to support artificial intelligence and machine learning and that’s where the current systems and processes could fall short to some degree. I remember hearing Annie Cooper, now retired but then Chief Nurse at NHS Digital, speaking at a conference a couple of years ago saying, “In the future we’re going to move away from a fascination with technology to a fascination with data.” My prediction is that this isn’t too far away. However, I think the biggest issue that integrated care records need to solve is the engagement of the citizen in the process. The Apperta Foundation’s blueprint for a co-produced personal health record (https://apperta.org/coPHR/) offers an insight into the strategic direction for electronic patient records and is essential reading for anyone interested in this subject.”