Abstract
ABSTRACT
Background
Priority‐setting partnerships (PSPs) are used to identify research questions that matter most to patients, caregivers, and clinicians. However, submissions that fall outside the scope of research prioritisation are rarely examined despite their potential to reveal important unmet needs. This study explored concerns relevant to practice and policy using the out‐of‐scope questions submitted during the Australian Child and Adolescent Cancer PSP.
Methods
We conducted the Australian Child and Adolescent Cancer PSP with the James Lind Alliance to identify research priorities for childhood cancer. An online national survey collected submissions from children and adolescents diagnosed with cancer, their caregivers, and healthcare professionals. We identified submissions that fell outside the PSP scope. These were collated and analysed using qualitative content analysis, followed by framework analysis to deductively map themes to the World Health Organisation Health System Building Blocks, enabling system‐level interpretation of community‐identified concerns.
Results
Of the 701 submissions, 99 (14%) were classified as out‐of‐scope and included in this analysis. Seventy‐two respondents contributed to these submissions, most of whom were caregivers (n = 58, 81%). Themes mapped across the WHO building blocks, including treatment access, research innovation and translation, health financing, service delivery and environment of care, leadership and governance, health information and communication, and health workforce. Additional concerns were classified as dimensions of care.
Conclusions
Out‐of‐scope PSP submissions provide valuable insights into patient, caregiver, and clinician concerns that complement research priorities. They highlight persistent challenges in access to care, supportive services, workforce capacity, information provision, and financial burden, underscoring that many family concerns stem from gaps in implementation, service delivery, and policy, rather than evidence alone. These system‐level challenges must be communicated to funders, policymakers, charities, and consumers to translate these insights into meaningful improvements in care.