A word with... Nicole Scholes-Robertson

A word with... Nicole Scholes-Robertson

“I love working with consumers, hearing their stories and learning about their amazing talents, skills, experiences and qualifications”

Dr Nicole Scholes-Robertson is an early-career and consumer researcher who has conducted translational research on rural and remote health inequities in kidney disease. She has played an important role in progressing consumer involvement in nephrology research. About 10 years ago, she received a kidney from her little brother and her lived experience with kidney disease, receiving a transplant and dialysis piqued her interest in consumer-led research.

A decade later, she has gained international recognition for her substantial contribution and leadership in consumer involvement in research, particularly in chronic kidney disease. Nicole completed a PhD with a NHMRC Postgraduate Scholarship and has since been appointed a Research Fellow at the Sydney School of Public Health, The University of Sydney. 

Nicole won the Sydney Health Partners (SHP) Award for Consumer Involvement in Research in June this year. 

A photo of Nicole Scholes-Robertson, smiling into the camera

Nicole, what led you to become a consumer researcher and why did you specialise in translational research on rural and remote health inequities in kidney disease?

Nicole: I had been a rural and remote physiotherapist for over 25 years when I became ill and discovered that my kidneys were failing. I spent nine months on peritoneal dialysis and then received a living kidney donation from my little brother Andrew Burgess about 10 years ago while I was living in Armidale NSW.

After the transplant, due to the immunosuppression, I struggled to work full-time as I kept getting colds and flu. I joined a team of researchers at the Centre for Kidney Research, a part of The University of Sydney, based at Westmead. They had funding to work with consumers in the area of kidney disease and this fascinated me. Not long after I had joined their Consumer Advisory board, they asked me if I would be happy to present at the Australian and New Zealand Society of Nephrology Annual Scientific meeting in September 2018.

It was an empowering experience so I discussed options with Professor Allison Jaure for further study. In March 2019, I enrolled as a PhD candidate at the University of Sydney, School of Public Health to investigate how we can improve access to dialysis and kidney transplantation for rural and remote Australians with kidney disease. I also worked part-time as a patient partner across many of their research streams and was involved in assisting with the consumer involvement.

How do you work together with consumers and how do you find the consumers you work with?

Nicole: I am fortunate to meet many other consumers through my work. Often, I initially mentor/buddy to assist new consumers to orientate themselves and be involved in research. I love working with consumers, hearing their stories and learning about the amazing talents, skills, experiences and qualifications they bring to the table. I predominantly work with rural and remote consumers. It is my passion to include them more in research.

How, in your view, does the involvement of consumers make your research better? Do you have a concrete example?

Nicole: Research is so much better with consumers involved. Its relevance is improved. Bringing a team together for research is always stronger than an individual, but consumers see things from a very special vantage point.

Here is one example. We are currently recruiting for a clinical trial that has been prioritised by patients. Consumers on the advisory board highlighted issues around the usability of an app. Following their feedback, we made changes and the app and the trial are much better for it.

Why do consumers want to work with you and get involved? What is in it for them?

I found that when I was on dialysis and post-transplant, I really wanted to know more about my disease and how I can be the best I can be although there is no cure for kidney failure. I believe that many consumers want to work with me and my team as they know we understand their limitations due to the high burden of dialysis. Most consumers want to learn more but also contribute due to the help they have received throughout their journey. Others want to be involved as they may have had some negative experiences and they want to improve the journeys of others.

Nicole Scholes-Robertson and three of her Aboriginal fellow consumer researchers are together in a group, looking at the camera and smiling.

What are your two top tips for consumer involvement in health and medical research and creating co-designed research? Do you have an example of how implementing them led to co-designed research?

Nicole: My number one tip is that it’s crucial to build trusting, equal relationships with consumers and other team members and that takes time. One of the best examples is when I was working with a young Indigenous consumer for about 18 months to build a relationship and trust and supported her through her first project. Now she is studying at University and is a vital member of a CARI guideline group, providing valuable lived experience and cultural knowledge.

My second tip is to be flexible as a researcher. In kidney disease, dialysis is a very exhausting and time-consuming treatment, and patients receiving this treatment can be limited in their ability to contribute day-to-day. Make sure you organise their involvement around their needs and always try to keep them in the loop if they cannot make it.

What is your role as consumer editor for Cochrane Kidney and Transplant?

Nicole: As the Consumer Editor, I attend editorial meetings and assist with plain language summaries. They are great for consumers and free to access in Australia. I have also been involved in developing a prioritisation project to help the team at Cochrane Kidney and Transplant know which topics are the most important to patients, their families and researchers.

Why do you think involving rural and remote consumers in research is especially important and what are the extra challenges and surprises?

Nicole: Rural and remote consumers must be included as they have different experiences of accessing care and availability of resources than those residing in metropolitan areas. Their lived experience is very different. In kidney disease it is even more vital as the people who live in the remotest parts of Australia, have a higher incidence and prevalence of kidney disease, but have the hardest time accessing care. No matter what type of health research people are involved in, ensuring there are rural and remote and Indigenous consumers is vital.

If a consumer is thinking about becoming involved in research but is unsure how to go about it and what is involved, what would you tell them?

Nicole: I would start by looking at a few websites about consumer involvement, such as Health Consumers NSW. I would also encourage them to talk to other consumers who are already involved, or their treating doctors who may know of opportunities.

I would encourage everyone to have a go. As you get more involved, you learn more about what interests you and what opportunities are available. I am still learning and consumer involvement is my favourite part of research.

What is next for you and your consumer researcher journey?

I am now based in Alice Springs and I am working on co-designing an intervention to increase access to peritoneal dialysis for people in remote and very remote communities. It is a huge learning curve, particularly culturally and linguistically.

Thank you so much for your time and insights and for speaking to me today, Nicole!

 

HCNSW’s Communications team member, Julia Brockhausen, interviewed Nicole in June 2024.

 

More information about Nicole and her research: Nicole Scholes-Robertson (anzsnasm.com)

 

How can Health Consumers NSW help with your health consumer involvement in research?

HCNSW can help you find health consumer representatives for your co-research, offers consumer engagement training for researchers and communities and can help you design your engagement: www.hcnsw.org.au.

Please email our Consumer Engagement Manager – Research, Carrie Hayter, at chayter@hcnsw.org.au to find out more.