Four years ago, Dr Ann Livingstone’s husband slipped on a wet footpath while they were out walking their dog. Little did she know his accident would change the direction of her research career.
With her husband unconscious and critically injured only a few doors from their home, Dr Livingstone’s clinical nursing skills kicked in as she administered emergency first aid, waiting for the ambulance to arrive.
Later, diagnosed with a catastrophic brain injury, her husband’s initial prognosis was dire.
“My husband is a ridiculously intelligent man. The first 12 months after his accident were unbelievably tough on our family. But miraculously, he has since recovered and returned to work. He loves his job. It is, however, mentally strenuous, so he now works three days a week instead of five,” Dr Livingstone explains.
Helping her husband navigate decisions about his medical care, rehabilitation, adjusted living needs and return-to-work plans opened Dr Livingstone’s eyes to the challenges faced by people with cognitive impairment.
“As a consequence of my husband’s accident, I’ve started doing a lot more research in the brain injury space. Which is distinct from my wheelhouse of cancer, clinical trials and health technology assessments,” says Dr Livingstone.
Lived experience underpins fellowship success
Dr Livingstone’s fresh determination to help Australians with cognitive impairment make decisions about their care and access person-centred services led her to apply for a Deakin University Postdoctoral Research Fellowship.
More than 1.1 million Australians with intellectual disability and brain injury are often excluded from participating in health and social research, policy design and service development due to assumptions about their decision-making capacity. However, aligning care services with the preferences of such patients and users creates better outcomes, fewer disparities and deeper engagement.
During Dr Livingstone’s recent PhD in Health Economics, she used a scientific approach called ‘preference elicitation’, which, in simple terms, means to find out what people prefer.
Applying this expertise, Dr Livingstone will use her three-year fellowship to develop, validate and improve methods for understanding the preferences of people with cognitive impairment—in particular, to identify their unique health and social care choices.
“Often someone else, a proxy such as a power of attorney, parent, partner or another relative, will make decisions on the cognitively impaired person’s behalf,” says Dr Livingstone.
“Yet research shows that the proxy’s decision can differ significantly from what the person would have chosen if given the chance to decide for themselves. So, I want to help these people have a voice!”
Finding the right model for improved outcomes
One routine method of choice modelling called Discrete Choice Experiments (DCE) helps an individual to think through their likes, dislikes, priorities, and discover what they need to give up (trade off) to obtain others they value more.
“As humans, we make trade-offs all the time during our decision-making. Whether it’s making a simple decision, like choosing to buy a barista-made coffee or make your own to save a few dollars, or a big, complex life decision like purchasing a residential property, where you need to weigh up many features from your wish list against what’s most important to you,” Dr Livingstone explains.
Unfortunately, the DCE approach involves a lot of information processing, which is mentally taxing for people with any form of cognitive impairment. Therefore, Dr. Livingstone plans to test a simpler method known as Best-Worst Scaling (BWS), which may offer an easier way to elicit preferences.
Simplifying decisions for inclusion and equity
BWS has been used successfully with children aged 8+ and yielded consistent results. However, only a handful of studies have examined BWS to support decision-making by people with cognitive impairment.
BWS works by giving the person a choice of a few statements about a situation that calls for their input (for instance, a health or social care decision). The person picks the best and worst statements for their needs, repeating this several times for different aspects or attributes of the situation, to build a clear picture of their unique preferences.
“BWS is more powerful than a traditional survey because each attribute is weighted by importance, so the person’s choice, specifically how important it is to them, is known. Compared to a proxy’s decision, we can use BWS to determine exactly what the person really wants or needs,” says Dr Livingstone.
“We’re investigating how to use BWS with distinct populations, including people with intellectual disability, acquired brain injury or other forms (e.g., dementia). I plan to add visual and tactile aids like photos, videos, moveable pieces, even simple Post-it notes, to support the physical selection of the statements, rather than the person holding all the information in their head or reading from paper or a screen.”
Dr Livingstone’s work aims to establish proven, easy-to-use, and scalable preference methods that will create fairer, more responsive health and social care systems—both nationally and internationally.
Deakin University Postdoctoral Research Fellowships support and develop early career researchers to become internationally competitive experts developing groundbreaking solutions to global challenges.
Read more about Dr Ann Livingstone’s research.
Dr Livingston is a member of the Deakin Health Economics domain within the Institute for Health Transformation.
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