Designing health systems for earlier detection and prevention of dementia

Reported by: Samuel Houlberg, CSaP Policy Fellowships Coordinator

Designing health systems for earlier detection and prevention of dementia

This term, CSaP’s Policy Fellow seminars are continuing with the theme of 'Approaches to Public Policy'. For the first seminar, Policy Fellows were joined by Dr Coco Newton, Research Fellow at UCL’s Institute of Cognitive Neuroscience and Schmidt Science Fellow at the Engineering Design Centre at the University of Cambridge.

Following on from her PhD work developing a new diagnostic cognitive test for dementia, Dr Newton is now considering how best to engage with primary care, and spoke about her work using a systems approach to evaluate the full experience of dementia patients.

Dementia is now the leading cause of death in the UK. At the same time however, the incidence of the disease per generation is decreasing. This indicates that as many as 50% of cases might be preventable through lifestyle change and avoiding risk factors. Research suggests that the disease begins as much as twenty or thirty years before the stage at which it is currently diagnosed. Dr Newton’s work seeks to develop interventions that may prevent patients from progressing to dementia as well as using a systems approach to address implementation challenges.

Engineering improvement projects offer a way to map and integrate implementation challenges that can be applied in a variety of health settings. Working alongside Professor John Clarkson (Director, Cambridge Engineering Design Centre), Dr Newton has been deploying the Engineering Better Care toolkit to map the entire experience of dementia patients from first identifying possible symptoms, through receiving a diagnosis and to treatment. This systems approach frames a problem from different angles. It emphasises four perspectives necessary to viewing health care as a system. Questioning the people involved highlights the different stakeholders implicated in a process and how it impacts them. Considering the system draws attention to how different components relate to, and affect, each other. An emphasis on design seeks to ensure that any changes respond effectively to the needs of those involved. And throughout, paying attention to potential risks retains a focus on what could go wrong and reiterates the need to pursue constant improvements. Together, systems thinking encourages an approach that clearly identifies and targets a particular problem, and rigorously pursues ‘good’ outcomes, whatever these may look like.

Dementia Data-enabled PJM figures - courtesy of Coco Newton and Natália Bodnárová

Applying this to her work around dementia, Dr Newton and her team have mapped the patient journey through their interactions with the health care system. By analysing posts shared on the Alzheimer’s Society’s online forum with machine learning tools, they have clustered around two million posts thematically, according to the problems that are mentioned. This research highlights the difficulties experienced throughout the diagnosis journey. Wider introduction of more sensitive diagnostic tests will be essential for identifying at risk patients earlier and providing better treatment. Using a systems approach, Dr Newton’s work shows that interventions should start by drawing attention to anxieties experienced well before diagnosis when patients first identify symptoms. Better awareness and support to counter early uncertainties can improve the overall experience of dementia patients.

Much of the following discussion centred on how this research can be translated to better policy interventions. Dr Newton was asked how this work has been translated onto where activity happens within the system. In other words, is it possible to show how early diagnosis efforts would shift workloads to release funds currently dedicated to other parts of the system? While engineering thinking is helpful, therefore, operations modelling is a necessary complement to effect some of these changes. Similarly, different perspectives offered from operations management could help to build buy-in from diverse stakeholders implicated by such a complex system. In some cases, individual ‘policy entrepreneurs’ have been an important catalyst to effect and sustain change. Dr Newton’s systems mapping has helped to clarify the complexity of the system involved in dementia care; the next stage of the work seeks to feed into further detail around implementing changes and evaluating potential outcomes.

Photo by Keith Tanner on Unsplash