A new report written by the MS Society went live this week on 17 July; to read it was to become, paradoxically, both disheartened and spirited on behalf of those who live with MS (multiple sclerosis) as well as the doctors, nurses and neurologists who help to provide care for them. For in approximately equal measure, ‘Improving care for people with MS: The potential of data and technology’ outlined the present failings and pitfalls that patients with MS have to put up with – including accessing digital resources that have not been evaluated, are not endorsed by the NHS, and sometimes broadcast erroneous, ‘worrisome’ information. On the bright side, and somewhat uniquely for polemical reports, the charity provided realistic, attainable solutions to the four key areas it had identified where shortcomings were most prevalent. Specifically, these areas related to the patient’s opportunity for self-care; the accessibility and quality of their care; the ability to obtain correct treatment at the best time, and the precision with which the patient’s needs are addressed.
The means of tackling these concerns are made obvious to us before we can scroll past the title page: the report pulls no punches about the necessity of incorporating technology and data into the methods currently used to treat MS. The longer this change is deferred, the greater the waiting times for patients, as well as the chances of more ‘haphazard’ decisions being made by local authorities in response to their ever-shrinking budgets.
One of the most glaring deficiencies in the management of MS is the amount of data, collected from patients, hospitals and clinics alike, in circulation: there simply isn’t enough. Concerningly, this is in spite of the clear advantages of professionals having access to and exchanging patient information, such as the construction of cross-referenced, detailed care plans that improve accountability, efficiency and the quality of the response to a particular patient’s symptoms. If these plans were to be shared, it would preclude people with MS from needing to recite their stories each time they saw a different consultant; and given the likelihood of MS patients suffering from secondary conditions, it is all the more needful that ‘urgent action’ is taken. In the meantime, only 5.4% of patients have access to coordinated, written plans. Therefore, on its part, the NHS must encourage higher rates of data exchange and interoperability, helping MS sufferers to understand how their personal information will be distributed and used in order to counter fears about mismanagement and increase the chance that they will consent to the communication of their data. In fact, the service might do well to take a leaf out of the cosily-named company DataWell’s book: carers log into the system, access patient information and work together on producing a detailed care plan.
Incidentally, not only is the data from the registered 15,700 patients insufficient, but too low a number of people with MS are even on the radar to service planners and commissioners at all: in 2015, only one fifth of CCGs had information on how many people in the area were using neurological facilities. Needless to say, this makes designing local MS services that much harder, since the decisions taken on the matter can scarcely be called informed. The gap in the clinical information that the register contains has to be filled, otherwise patient outcomes in particular regions remain difficult to monitor.
Data, or a lack thereof, was not the only thorn in the charity’s side; the report also emphasises the improvements that must be made to online platforms and digital tools. It is all well and good asking patients to publicise data about themselves, but ‘digital tools’ should be prepared to offer a proportionate return on this: at the moment, lots of available resources concentrate on the management of symptoms that are not specific to those of MS, and some of those that sustain a narrower focus are not necessarily reliable. If trustworthy, internet-based platforms were expanded, then many more people with MS would be equipped to provide better self-management for themselves, increasing their freedom and independence. Two-way communication is only fair, after all, in addition to reassuring patients that the sharing of their data does not go unrewarded.
In its closing stages, the report identifies a surprising but crucial flaw in the relationship between healthcare organisations and the needs of their patients: the former often collect data that is pertinent to processes, not outcomes. As a consequence, services do not obtain invaluable information that would allow them to better meet patient requirements, such as the performance of certain treatments in the long-term, thereby complicating the control of the progression or the disease and the arrangement of primary and secondary care. In an age where, as is pointed out, supermarkets can track thousands of customers nationwide and rearrange shelves to decrease the time spent locating a product, the question really is begged as to why the potential to alleviate the suffering of MS patients through simple technological advancement remains untapped.