The Kaleidoscope Project | Engaging Children and Families in Research – a one day workshop 15.10.16

Our one day workshop brought together 66 children, families, communities, and health professionals to learn and discuss how to engage children with chronic conditions and their families in research. The forum was facilitated by Sally Crowe from the United Kingdom, who is a world-recognised expert in patient engagement, a member of the British Medical Journal’s Patient Panel and former Co-Chair of the UK-based James Lind Alliance (JLA), which facilitates research priority setting partnerships globally. We thank all the contributors and attendees for their enthusiasm and valuable contribution, which helped to make the day a huge success! Please check out our twitter feed (below) for all the workshop tweets! See below #kidsq.

Program: The final program is available here.

Collaborators: Thank you to the wonderful presenters for sharing their views, perspectives and experiences. Their presentations can be accessed here: Sally Crowe, Anne McKenzie, Nettie Burke, Laura Griffin, Chandana Guha, Jessica Keath and Anthony Brown.


Attendees: Adam Bowyer, Adam Jaffe, Alison Bowers, Allison Tong, Angela Ju, Angelique Ralph, Anita van Zwieten, Anne McKenzie, Anthony Brown, Antonio Penna, Benjamin Wise, Camilla Scanlan, Carolina Valerio, Carolyn Rogers, Caron Kambi, Chandana Guha, Chris Walker, Chris Cowell, Dane Kambi, Fred Elharris, Georgia Pagano, Grace Spencer, Harriet Hiscock, Harrison Odgers, Helen Puusepp-Benazzouz, Husna Razee, Jackie Boyle, Jan Belcher, Jayne Blake, Jen Stumbles, Jenny Couper, Jessica Keath, Jonathan Craig, Josephine Gile, Juliet Chandler, Justyna Ozimek-Kulik, Karen Wong, Karen Bau, Karine Manera, Kylie Black, Laura Griffin, Laura James, Laurel Mimmo, Leanne Hallowell, Lizzy Harnett, Margaret Wallen, Maria Lorenzo Fernandez, Megan Jackson, Melissa Bowyer, Michael Bowden, Michelle Haskard, Mustapha Harris, Natasha Nassar, Nettie Burke, Peggy Lin, Penny Jones, Peter McGann, Petra Karlsson, Pietro Pagano, Rema Elhassan, Robert Gardos, Ross Pinkerton, Sally Crowe, Samantha Carlson, Sharron Hall, Siobhan Brophy, Sophie Cole, Sukanya De, Suzanne Sheppard-Law, Suzy Haddad, Yana Wilson, Zoe Fernance, Pamela Lopez-Vargas.

Feedback from attendees:

“Thank you for the opportunity to listen and learn and to discuss needs. As a parent of a child with a chronic disease, it’s nice to have a voice.”

“As a researcher, being able to hear about the priorities from consumers and their reasons for participating in research was invaluable. Thank you!”

“Loved that we had opportunities to hear the voices of parents, carers, other researchers and clinicians.”

“Excellent day, thought provoking and informative.”

“Good to come up with key research questions by the end of the day.”

“Lovely to see that the health care professionals do care and want to help us with our sick children.”