Introduction: Cancer Council New South Wales (CCNSW), Cancer Council Victoria (CCVIC), and the University of Newcastle (UON) partnered to conduct an NHMRC-funded, randomised trial exploring the effectiveness of structured distress screening in 131120 telephone support services. Engaging stakeholders throughout the research process ensures outcomes are service-relevant, and able to affect appropriate changes in best practice. Strategic partnerships can also leverage emerging opportunities to address additional research questions.
Aims: To outline collaborative strategies used to identify emerging patient, researcher and service-driven questions, and provide three case-studies whereby these strategies resulted in new study initiatives.
Methods: Collaborative strategies to identify additional research initiatives included: quarterly steering group meetings; bi-annual site visits; ongoing audit of trial data with circulated updates; leveraging of existing data collection processes; and flexible survey modules with open-ended items to collate participant and researcher notes.
Results: Three sub-studies were identified. Study 1 (service-driven) identified via steering group meetings: Supporting patients to secure or access private health insurance (PHI). Of 270 participants, approximately 50% did not have PHI; 42% did not experience any difficulties in claiming PHI; and 6% experienced difficulty with most common issue being inadequate coverage (77%). Study 2 (researcher-driven) facilitated by existing data collection processes: Gaining consent to access to a representative sample of Medicare and Pharmaceutical Benefits Schemes (MBPS) records. Consenting participants represented only 14% of all trial participants, and overrepresented patients compared to caregivers. Study 3 (patient-driven) identified via field notes: Exploring caregiver and patient financial distress. Existing survey items did not sufficiently capture the lived experience of financial distress requiring extensive field notes to illustrate this further. New survey questions are now included and will provide important data on the unmet needs in this population
Discussion: Strategic trial design provides invaluable opportunities to answer new questions, and maximise trial outcomes for study partners.