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Case study: Making digital health accessible for all

An interview with Dr Sarah Fearn and Dr Alexandra Young

DR SARAH FEARN Senior Research Fellow, University Hospital Southampton NHS Foundation Trust

My Medical Record is an online personal health record (PHR) provided by University Hospital Southampton and owned by the patient. It helps patients to co-manage their healthcare by connecting them to their care team and providing a direct line of contact between them and the hospital. As well as helping to manage their healthcare, it can also help to reduce the need for hospital visits.

We are currently setting up a study called Neuro Online, designed to investigate how people with long-term neurological conditions can most benefit from using My Medical Record.

Moving aspects of healthcare into a digital arena has plenty of advantages, but it also requires comprehensive assessments and evaluations in order for healthcare professionals and their patients to get the most out of it. Neuro Online is designed to look at the benefits and challenges around people with long-term neurological conditions using My Medical Record.

The study has been designed and set up over the past year, and recruitment to the research will begin in May. It’s a large study looking to recruit 2,000 patients over seven years. The reason for the extended timescale is that we want to track patients’ use of the platform over the course of their disease progression; different aspects might be helpful to them at the beginning of their use of My Medical Record compared to later in life.

We’re looking at a range of different conditions in the study: epilepsy, multiple sclerosis, motor neurone disease, Huntington’s disease and Parkinson’s, young onset dementia and other atypical dementias. All of these conditions have hugely variable needs and the data we collect will help to ensure as many people as possible can access and benefit from the platform.

There are many opportunities to develop research skills through research groups, CPD and practical learning.

DR ALEXANDRA YOUNG Senior Research Assistant, University Hospital Southampton NHS Foundation Trust

Due to the number of conditions included in the study, we’ve developed four sub-studies to help us better understand additional specific areas. These sub-studies look at how care planning takes place inside the online system, what personal characteristics influence how people use the platform, how people with young onset dementia and Huntington’s disease use the platform, and how quality of life in young onset dementia can be assessed via the platform.

Both of us came into research from different backgrounds; Sarah from a social science background, with experience in political research and research design, methods and ethics, and I have an anthropology background supported by a mix of research and practical healthcare experience.

Having careers in different backgrounds hasn’t been a barrier for us in getting involved in clinical research. Health research requires many skills that can be developed and transferred through other careers. By working in such a large-scale study, we are also able to develop new skills, collaborating across departments and continuously building new networks and research capabilities.

We both enjoy being hands-on in our research, with our current roles being a blend of working directly with patients and carers and being behind the data. Working to understand the patient perspective in order to influence healthcare – in our case digital healthcare – can be incredibly rewarding. It can provide a voice to patients whose experiences might otherwise not be heard, and research that improves services and approaches to healthcare can be just as powerful as medical research.

Both of us came into research from different backgrounds.

Both of us have been fortunate to receive support from the NIHR Applied Research Collaboration (ARC) Wessex and training and support from CRN Wessex. There are many opportunities to develop research skills through research groups, CPD and practical learning. There are many projects to get involved with at University Hospital Southampton.

Even if you have a slightly unconventional background or experience in research, the opportunities are there for you to pursue, with help and support available. We would encourage anyone with an interest in clinical research to get involved.