Patient and Family Involvement in Research
The Swedish Childhood Cancer Fund is committed to ensuring that the research we fund is informed by the needs, experiences and priorities of children affected by cancer and their families. Patient and family involvement strengthens the relevance, quality and impact of research and contributes to research that is meaningful for those it seeks to benefit.
Patient and family involvement can take many forms throughout the research process. Individuals with lived experience may contribute through participation in priority-setting committees, steering groups, advisory panels and project teams. They may also collaborate in shaping research questions, study design, ethical considerations, participant information materials and the dissemination of research findings.
Childhood cancer affects the entire family. The perspectives and experiences of children, parents, siblings and other family members therefore provide valuable insights that can enhance research. When these perspectives are incorporated from an early stage and throughout the research process, research becomes not only scientifically rigorous but also ethically grounded and relevant to the needs of patients and families.
Are you looking to involve patients or family members in your research?
Successful involvement requires careful planning and a structured approach. This includes defining clear roles and expectations, providing appropriate support and training for all contributors, and ensuring fair compensation for involvement.
To help us connect you with patients and family members with relevant lived experience, please complete this form. We encourage you to contact us well in advance to allow sufficient time for recruitment and planning
Requests are shared through a newsletter with patients and family members who have registered their interest in contributing to research and development activities.