Health Experience Updates

All of our work is informed by and founded on people's experiences of living with MS and T1D. Our first step is an examination of what the peer-reviewed literature can tell us about this, and from there we are actively working with people to update this understanding and build it into our research. We are working with people living with MS and Type 1 Diabetes in and around the ACT, exploring ideas about the collection and sharing of health information - the values, concerns and sense of opportunity people have about this.

Health Experience Team

Evidence from previous epidemics and pandemics has demonstrated that neglect of “usual” care can be an unintended consequence of prioritising the emergency response. At the same time, protective measures such as social distancing during pandemics can lead to changes to the provision of health care services, including the use of telehealth and personal protective equipment (PPE), in particular, the use of face masks during consultations.

While a number of studies have examined health system responses and the experiences of doctors in relation to the provision of routine health care during epidemics and pandemics, few have elicited the experiences of people with chronic health conditions in terms of their access to health care during these times.

Capturing people’s experiences can provide a more complete picture of how health  services are meeting the needs of those who use them, including aspects such as information about access, suitability of care, and ease of communication. We are keen to gain insight into the health care experiences of people living with MS and young people living with Type 1 Diabetes during the coronavirus (COVID-19) pandemic in Australia.

We have received ethical approval to begin recruiting people to our study and following COVID-19 social distancing protocol we have moved all our studies to being contactless and are interviewing participants via Zoom, Skype or telephone. If you are interested in more information about the studies please contact us at ohioh@anu.edu.au

We welcome our newest member of the OHIOH Health Experience Type 1 Diabetes Team, Dr Nicola Brew-Sam who joins us from Germany as part of the DAAD (Deutscher Akademischer Austauschdienst) research program.

Dr Brew-Sam completed her PhD at the University of Erfurt in cooperation with the Nanyang Technological University in Singapore investigating diabetes patient empowerment and the use of apps for diabetes self-management.

The focus of Dr Brew-Sam’s research is on children and adolescents with Type 1 Diabetes. Diagnosis and management of Type 1 Diabetes during childhood and adolescence brings many challenges to both young people and those around them. She aims to identify how sensor devices for managing diabetes can meet the values and needs of young patients with Type 1 Diabetes and their supervising health professionals and carers, so as to inform engineers and designers.

Professor Luis Salvador-Carulla and Dr Nasser Bagheri are members of the OHIOH Health Experience Team. They are conducting research to map out the health ecosystem for Multiple Sclerosis (MS) patients in the ACT region. They will develop an integrated atlas of MS to explore the gaps in care provision for people living with MS. This will provide a baseline understanding of MS health services in the ACT. It will also provide a decision-making tool that can be used by people with MS, health professionals, MS groups and organisations for monitoring, reviewing and improving MS health systems of care in the ACT region.  The Atlas of MS will provide a unique information and advocacy tool to support initiatives to develop public policy, service provision and support, and ultimately to improve the quality of care and life of people with MS.

We have been conducting workshops to explore the domains of misunderstanding between researchers and people living with MS. Through identifying differences in the way that scientists and people living with MS conceptualise problems, manage dissenting opinions, and understand the final point of research, we aim to develop and implement a set of reflective tools to support our collaborative research. This work is being funded through an Innovation Grant from MS Research Australia.

Our Health Experience Diabetes Team has been working with ANU College of Engineering and Computer Science TechLauncher researchers and students exploring the potential of future monitoring devices.