Prof Nicola Kayes (Centre for Person Centred Research, AUT) and her team have just launched GREY MATTERS, a website for people who are experiencing changes to their memory and thinking. It is a website to learn about the ageing brain and how to keep your brain healthy, to explore the different strategies people use to help them through the day, and for people to share their own tips, tricks and experiences with others.
The GREY MATTERS website was born out of the realisation that even though we know a lot about the deficits in function caused by mild cognitive impairment (MCI), little is known about how people actually live with the condition, the strategies they find helpful, and the language they use to describe the condition. Aiming to close this gap, the project team – at that point led by Prof Kathryn McPherson (AUT) – devised a plan, to create an interactive website resource, developed with and for the people who are experiencing changes in their memory and thinking. After securing funding from Brain Research New Zealand, Kathryn handed over the project to Nicola, who, along with Prof Pauline Norris and Prof Leigh Hale (University of Otago), led it through the research and development process to the website launch.
The project team followed an extensive co-design process in collaboration with the Good Health Design team (AUT) to ensure the website met the needs of the end users. “Co-design was important for this project to ensure the website would be of value to people, and to make sure it would be accessible and easy to use,” Nicola explains. “In other words, we were keen that people would want to use it and be able to use it!”
Nicola and the team led a co-design workshop with people experiencing changes to their memory and thinking as well as their families, worked with participants to prioritise content options, and carried out user testing of the website to further refine it. The co-design workshop specifically was a standout for Nicola: “It was such a privilege to work alongside people experiencing changes to their memory and thinking. We were at risk of making many assumptions about the things that cause them the most concern so it was so important for us to hear their perspectives about what the website could do for them. It was also humbling to realise how important taking part in the workshop was for them – they really felt their perspective was valued.”
The collaborative nature of the project was another highlight for Nicola, in particular working with the Good Health Design team. “I would like to acknowledge Guy Collier, Nick Hayes and Cassie Khoo for all they did to bring the website to fruition. This project really demonstrates the value of cross-disciplinary collaboration to more meaningfully address matters of concern relevant to the ageing brain.”
After several years of research, planning, designing, and testing, the website has now gone live, and the project team is thrilled to share it with the world, as Nicola says: “We are so excited that the website is now able to be used by people in the community. We are proud of what we have achieved and really hope we have done justice to the words and ideas of the people in the community who contributed to this process.” She looks forward to seeing people start interacting with the website, and adds: “It would be great to see the collection of tips, tricks and stories grow over time so that people can access those and get ideas for managing their own day to day life. It would also be amazing if Brain Research New Zealand can learn from, and be informed by, their lived experience.”
The GREY MATTERS website was funded by Brain Research New Zealand and developed by AUT’s Centre for Person Centred Research in collaboration with Good Health Design.