Discover the challenges in handling patient data and the rise of feral information systems, as Andrew Meiner of Stalis LTD explains more about the world of global healthcare systems.
Global healthcare systems are under increasing pressure due to ageing 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. Ensuring the security of patient data in this manner and delivery of care 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 these new processes.
However, in most healthcare systems, patient data is locked in data ‘silos’ with little or no standardisation around clinical terms and of generally poor data quality. To compound this problem even further, just about every healthcare organisation has hundreds of ‘feral information systems’ which present huge challenges to Chief Information Officers (CIOs) in terms of GDPR compliance, governance, security, privacy and risks to business continuity.
Why is it a problem?
A hospital is an extraordinarily complicated environment where, unlike most other types of organisation, not every process is fully understood and documented. Clinicians often have very specific demands and needs which require niche and tailored solutions. Unfortunately, even the most digitally advanced hospitals in the world running the most sophisticated electronic patient record solutions (EPRs) are unlikely to be able to innovate at a rate that keeps pace with these clinical requirements.
There are good reasons for this, a global product that needs to be clinically safe must go through a rigid and complicated process before being ready for the market and therefore has strict development roadmaps and release timetables. So, when a clinician asks for his EPR vendor to create some functionality to meet a specific need, the answer is invariably, ‘no’ or at best, ‘we will put this forward as a candidate for a future release.’ Neither response helps the clinician who decide to build the solution themselves.
What are feral information systems?
Feral information systems, therefore, are software solutions developed by individuals or groups to help with day to day activities. They are called feral (or ‘wild’) because they are used in addition to core IT systems, working around key system architecture, more often than not without the blessing of management. A more formal definition, coined by Houghton and Kerr in 2006 is, “A feral information system is any information technology artefact that an end user employs instead of the mandated information system.”
Usually, feral information systems use corporately supplied, commercially shrink-wrapped, desktop spreadsheets and databases (e.g. Microsoft Excel and Microsoft Access). Other terms that are sometimes used instead are workarounds, shadow systems, and occasionally maverick end user development.
There are positives and negatives to the use of feral information systems. The positives are that the requirements are driven by end users and therefore the feral systems are filling a real gap in day to day ‘business as normal’ operations, providing innovative solutions to solve real problems. As a result, they often become essential for users to carry out their daily work.
However, the downside is that the lack of governance around their use and distribution means that they present considerable risks around security and data privacy in an environment where these are paramount; are a risk to business continuity (what happens when the person who supports a feral system leaves the organisation?); and the data held in them is not available in core systems due to lack of data sharing and integration.
All of this means that feral information systems represent a huge GDPR noncompliance risk. In terms of data portability alone, a hospital cannot hand over the data it holds on a patient if it doesn’t even know all the systems that the patient could have data stored in.
However, feral information systems appear because the user has a need for functionality that is not supported by existing systems. For the reasons mentioned previously, the need for innovative solutions that can be deployed rapidly will not go away and therefore the risk of feral information systems will remain until CIOs can find a way to build new systems in a controlled way. This must be done in a manner that does not compromise the biggest benefits of innovation, flexibility and speed of deployment.
Who are Stalis and how can they help?
Stalis have a mission to provide first class data to support first class care. They are healthcare industry experts in data migration, archiving, extraction and integration and have started to tackle the problem of feral information systems in health and care provider organisations with their new Open Clinical Data Repository (OpenCDR) solution. OpenCDR is the latest product in the CareXML® Data Management suite.
Stalis OpenCDR enables a platform approach with a well-defined, vendor-neutral data layer and open, easy to use APIs and tools. It integrates with all the leading EPR systems on the market using the global Fast Healthcare Interoperability Resources (FHIR) standard and allows healthcare organisations replace feral information systems with modern, purpose built apps that can be integrated with core systems.
Stalis help CIOs approach the feral systems dilemma in a structured and organised way:
- Assisting in the cataloguing of feral systems to understand how big the problem is. As mentioned, most large organisations will typically find hundreds of such systems.
- Helping to define a strategy on how to let users build or buy these applications in the future and as industry experts, Stalis can assist in eventually migrating the existing ones.
- Working with the client to select the first application. This should be an area which has eager end users, will provide high value and does not require a lot of existing legacy data. Inspecting the backlog is often a good place to start. To ensure early success, choose an application which was planned or where a burning need already existed.
- Stalis then integrate the CareXML platform with the EPR and start synchronising the data. This data is then normalised into a vendor neutral format and stored in the data platform. It is now ‘unlocked’ and can be accessed via application programme interfaces (APIs).
- The app can now be developed using the APIs to access the data in the platform. The solution comes with end user development tools to build web forms and iOS apps. However, Stalis also have development capability if sophisticated functionality is required. The use of common APIs and selected data models lowers the risk considerably. Developers can focus on the user-experience and nailing the usability and process aspects of their solution while delegating the data management part to the platform. This also ensures that the new data collected will be available for the next applications preventing new silos of data.
- Finally, the app is rolled out to make sure it is providing value before going on to the next one. Depending on the use case, this first iteration can be done quickly, in a matter of weeks ensuring early success and providing immediate value while setting the foundation for the future.
Repeat steps 3 to 6 by selecting a new use case or replacing one of the existing feral systems
Where is it making a difference?
In the NHS in England, Stalis is currently talking to two Global Digital Exemplar acute hospitals that have achieved very high levels of digitisation using a ‘megasuite’ electronic patient data record system. In both cases, Stalis performed the data migration of legacy data into the new EPR system and provided an online archive, which can be viewed from the EPR via an integration.
Both organisations have confirmed that they have a problem with feral information systems but have not had a strategy for tackling the problem. Stalis’ OpenCDR provides such a strategic solution and Stalis are now working with both organisations to start defining the size of the problem and identifying the first feral systems to convert.
The first system chosen could be similar to the app which won Stalis the recent Digital Health Rewired Hack Day in London, March 2019. Stalis created an app built in the manner described above which helped to monitor babies that were sent home with congenital heart defects. Currently a full time qualified nurse is employed to systematically telephone parents at home and collect data which is then manually entered into a standalone Microsoft Access database. With nurses in such short supply and this being an example of how replacing just one feral system could free up a whole nurse, it asks the question as to how many more valuable resources could be freed up by tackling the feral information system problem?
Please note, this article will appear in issue 10 of Health Europa Quarterly, which will be available to read in July 2019.