Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research-A workshop report.
Liesa Josephine Weiler-WichtlCarina SchneiderHannah GsellAnna-Maria MaletzkyAnita KienesbergerClaas RöhlAlbina BocolliJohannes GojoRita HanslAnna ZettlMaximilian HopfgartnerUlrike LeissPublished in: Cancer reports (Hoboken, N.J.) (2024)
These findings demonstrate that with a diverse set of effective methods and flexible support, actively involving patients, survivors, and caregivers can uncover patients' unmet disease-related needs and generate practical solutions apt for scientific evaluation. The resulting toolbox, filled with evaluated and adaptable methods (workbook, Supplement 1 and 2), equips future scientists with the necessary resources to successfully perform PPIE in the development of health care research projects that effectively integrate patients' perspectives and address actual cancer-related needs. This integration of PPIE practices has the potential to enhance the quality and relevance of health research and care, as well as to increase patient empowerment leading to sustainable improvements in patients' quality of life.