Nicolas

Researcher & Patient Partner, Educational research & teaching

Nicolas is a kidney transplant patient and an assistant professor at a university. Before receiving a new kidney, he had been receiving dialysis treatment for about 8 years. He was a student at the time, and wrote most of his PhD while sitting on a dialysis sofa at the university hospital. Since his graduation and as a professor, he has been involved in medical education and also in promoting partnerships as a patient and a researcher. Nicolas believes that the knowledge patients have to offer from their lived experiences is very important for research, but realizes that it is not always a natural process for everyone involved. He thinks that it is really important that patients and researchers are provided training to be good partners. In an ideal world, patients and researchers would have a coach when they are working together – someone who can help them solve their problems as they go along. A key challenge is to help patients see research as something where they can make a big difference. As a patient collaborator, he appreciates the learning and personal growth that comes from being part of research projects.

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• Learning From Other – Nicolas
  Nicolas views patient stories as raw valuable data that contributes to a broader body of knowledge
• Measuring Impact of Partnership – Nicolas
  Nicolas believes that there are benefits for patients as partners, but the impact on the research itself is still unclear
• Impact on Research – Nicolas (2)
  The voices of patients did improve the research, according to Nicholas, but he thinks we still lack good evidence.
• Impact on Research – Nicolas
  Nicholas explains that patients have “experience by living the knowledge”. They know their disease through experience.
• Challenging Experiences – Nicolas (2)
  Nicolas reflects on a time when patient partners felt “invisible” even when invited to join a meeting
• Challenging Experiences – Nicolas
  If researchers feel they have ‘messed up’, Nicolas worries they will be less motivated to engage in further partnerships
• Supports needed – Nicolas
  For Nicolas, there is a difference between training to inform and learning through continuous coaching.
• Looking forward – Nicolas (3)
  Funding is becoming more difficult but Nicholas hopes that health research will be spared
• Looking forward – Nicolas (2)
  Variation in patterns of illness across different groups indicates that things must be done differently, according to Nicolas.
• Looking forward – Nicolas
  Linking engagement, the quality of research and impact on the lives of Canadians is key, says Nicolas.