What is your field of research?
I work in the area of developing and implementing clinical practice guidelines on the care of people with chronic kidney disease. In this role, I search and collate research evidence and help to support guideline groups in developing recommendation for care based on the current research.
I am also interested in examining methods and the quality of scientific literature in kidney disease.
Why is research important to you?
Research can help inform clinical care and improve outcomes for people with chronic kidney disease.
What sparked your interest in involving patients and caregivers in kidney research?
My Nanna had chronic kidney disease, so I was aware of kidney disease at an early age. The first guideline I was involved with was on autosomal dominant polycystic kidney disease. Patient and caregivers were involved in developing the topics and outcomes addressed in the guideline and they emphasised the need for education and psychological support.
The involvement of patients and caregivers in research is needed so that we can focus what we do on outcomes that matter to them.
What are the highlights and challenges of working with patients/caregivers?
We employed patients in the research on Indigenous Guidelines to provide insight, connect us with community and to disseminate the recommendations. The biggest highlight was that the recommendations of patients and caregivers which led to change in the guidelines about the care they receive. It was rewarding to see the growth in confidence and to impact an area that was important to them. We needed to recognise the challenges for the patients and caregivers and to find ways to accommodate those burdens.
Why is patient/caregiver input important in research?
The voices of patients and caregivers helps us to focus on what matters, what will make a difference, and how the research should be communicated. It moves research from being purely “academic work” to something that truly matters. Many patients and caregivers have unique skills, perspectives and insights that will transform research.
What further support is needed to expand/enhance patient involvement in research?
We need to dedicate more resources and time to expand the pool of people who can collectively contribute to research. All patients and caregivers have something valuable to offer we want them to know that they can make a difference. We can enhance involvement in research if we give people the tools to speak confidently about their experience with chronic kidney disease.
Do you have any advice for researchers who want to involve patients/caregivers in their studies?
A good place for researchers to begin would be to attend consumer events to meet and talk to patients and caregivers. They could also read guidance documents, speak with clinicians in their research area and attend scientific meetings. The involvement of patients and caregivers in research is becoming more important in all areas of health care.
What impact have patients/caregivers had in your research project/s?
The impact of patients and caregivers in our guidelines has been super important. Each one of our guidelines has been expanded due to information provided by patients and caregivers during our workshops. Topics such as the need for education, psychosocial support and the need for integrated care across specialties were included because patients told us these were important to them and would improve their care.
The guidelines on management of chronic kidney disease among First Nations Peoples in Australia and New Zealand included a deep consultative process that set the scope of the guidelines and changed recommendations to lower the age of screening for chronic kidney disease.
Furthermore, involving consumers in our Steering Committee has resulted in utilising their expertise and improving our organisation’s communications and engagement with the kidney community. The value they add to CARI Guidelines is immense and has transformed CARI Guidelines.
What roles have patient/caregivers played in the research projects?
We involve patients and caregivers at all levels of CARI Guidelines. They are involved at every level as shown in the diagram below.