Multiple Sclerosis (MS) is an auto-immune disease that is one of the commonest causes of disability in working age adults in the world. Furthermore, the number of people affected is growing. Dr Agne Straukiene, Consultant Neurologist at Torbay and South Devon NHS Foundation Trust, is seeing an increase in patients of roughly 10% a year and believes this to be reflected in MS clinics across the country. Its personal and social impact is such, therefore, that an urgent need for improving the outcomes of patients with MS (both nationally and internationally) has been recognised. This was highlighted very powerfully in the policy report Brain Health: Time Matters in Multiple Sclerosis (2015), which advised a “more urgent approach” to the management of MS.
Dr Straukiene is leading a project to design and implement a bespoke, integrated, web-based solution for MS that will replace the current paper-based system at the Trust’s Neurology Department and significantly improve the management of its patients’ pathways. It will also provide better monitoring of the disease and audit and research functionalities, as well as potentially forming the foundation for an MS solution that could link sites using InfoFlex across the region or even nationally and internationally. Phase 1 of a 2 phase plan is likely to see the solution in live use in March, 2020.
As a result of increasing numbers, Dr Straukiene realised that a management tool was needed that could both free up clinical capacity and allow for more effective use of clinicians’ clinic and administration time. It needed to integrate with other hospital systems to enable efficient live data exchange, be usable on a range of devices, automate work processes and alerts, eliminate opportunities for human error and the need for time-consuming, repetitive data input, as well as provide easily viewed data that would enable more targeted, proactive patient interventions.
In terms of achieving improved patient outcomes, safety and experiences, a better overview of each patient’s case was vital. Dr Straukiene explained: “Immunotherapies that modify the disease trajectory have attached side effects. So, for the better monitoring of patient responses, potential side effects and adherence to the medicine, we decided to design a unique, bespoke MS solution that will allow us to monitor our patients in a better manner, including remote monitoring. What would be unique would be the capture of patients’ self-reporting data. We are planning to use validated questionnaires to define disease progression such as YourMS, ProDiscuss and PAM (Patient Activation Measure).”
Dr Straukiene’s experience of software solutions currently available for MS showed her that they are limited in terms of their capacity to communicate with other hospital systems, such as pathology or PACs systems. InfoFlex, on the other hand, integrates easily with other systems and is already widely used across the Trust; the new MS design would use the existing InfoFlex interface with the Trust’s PAS.
Furthermore, the Trust had previously designed a successful Rheumatology solution using the InfoFlex toolset. It illustrated the kind of functionalities that Dr Straukiene wanted for MS Services and could be used as a model on which to base the new MS design. The presence of in-house expertise and support was also reassuring.
Financially, as the Trust already has a trustwide InfoFlex licence, the only extra funding needed was for the tailoring of the InfoFlex solution to Torbay MS Services. An attractive feature of InfoFlex licensing is that the MS design, once completed, can subsequently be shared free of charge by other trusts holding an InfoFlex licence. According to Dr Straukiene “it’s a great bargain for other MS services to implement the InfoFlex MS solution.” In fact, she noted, there is already growing interest in using this MS design from other InfoFlex licence-holding trusts. Also, some other neurology sub-specialties, like Parkinson’s disease, are planning to design a database using the InfoFlex toolset.
Dr Straukiene has clearly enjoyed the strategic and structured design process. She and InfoFlex designers are working collaboratively, a process she described as “spot on”. She went on to say: “I have no complaints whatever. We have regular meetings and regular feedback from each other. We work as a team and it’s quite an enjoyable process. Whilst working together we have learned a lot from each other and it’s great to share expertise from our respective medical and IT perspectives and find a ‘common language.’”
This phase is focussed on creating a clinical solution that will support the delivery of MS services in line with nationally recognised Best Practice and NICE guidelines. It will use the existing InfoFlex interface with the hospital PAS and facilitate the management and collection of clinical information such as disease type and the DMTs (Disease Modifying Therapies) that have been prescribed, as well as monitoring relapses and responses to treatment. It will record functional assessments carried out in clinic and maintain records of the communications between staff and patients, with summary and graphical presentations of measured outcomes.
Dr Straukiene described this phase, which is still in the initial planning stage, as “more interactive, with information feeding into the database from patients or other hospital systems.” The idea is to interface with other hospital systems to enable effective disease monitoring, by, for example, facilitating the automatic input of blood test and MRI scan results as well as alerts triggered by abnormal results, missed blood test appointments or attendance at hospital. The web solution would facilitate the interactive process of patient feedback via questionnaires and self-reporting. Report generation would provide clinicians with easy to read, real-time data that could, for example, help them to monitor disease activity, generate risk scores and assess treatment effectiveness. Also, clinical assessment details captured during consultation would be collated to produce a same-day summary report, freeing up time for the Neurology service administration team.
The bigger picture
The MS and Related Condition Network within the South West, which comprises MS services at University Hospitals Plymouth NHS Trust, Royal Devon and Exeter NHS Foundation Trust, Royal Cornwall Hospitals NHS Trust and Torbay and South Devon NHS Foundation Trust, has recently begun discussions about the possibility of a linked InfoFlex MS solution across the 4 sites.
The benefits of this project will be an integrated solution that brings together Patient Pathways, Regional MDTs, Patient Activation and Coordinated Research within the South West. Further benefits of sharing a dataset across sites would be to reduce variation in overall management, minimise clinical risk, improve patients’ experience and rationalise the use of facilities and clinicians’ time. Also, because of greater numbers in the combined cohort, the sites would be able to produce useful, real-world data while increased collaboration between MS services on potential studies would support both feasibility and delivery.