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Healthcare consumers are people who have lived experience of a health issue. They include patients, families and friends, carers and members of the general public.
As part of the CTC’s mission to improve global health outcomes, we engage with consumers around the investigation, design and running of trials to increase a trial’s likelihood of making a positive impact on consumers and the health care system in a number of ways.
Oncology: The CTC works closely with five cancer cooperative groups and their Consumer Advisory Panels that comprise cancer survivors, patients and carers. These panels provide a consumer’s perspective on trials, helping to review new trial concepts, identify gaps in research, assist with trial information dissemination, and advise on recruitment strategies.
Diabetes: The CTC works with consumer advisors on technology-based diabetes studies, in particular the Hybrid Closed Loop and Fame-1 Eye studies (see diabetes section). Consumers provide input into the challenges faced by type 1 diabetes patients and the type of research that is important to them. They also provide feedback on consent forms and, where appropriate, present at forums and talk to the media.
Neonatal & Perinatal: To improve recruitment of pre term babies to key trials, the CTC is partnered with Miracle Babies Foundation (MBF), a consumer body representing parents of sick newborns. In the current TORPEDO 30/60 trial, MBF helped secure a waiver of consent for the trial, a critical step that sees premature babies – particularly those born at nights or on weekends who were often excluded from participating – automatically included in the trial.
Health Economics: The CTC is working in partnership with consumers to enrich study design and impact in the Melanoma Genomics Managing Your Risk study, the PET/CT melanoma surveillance study, and the symptom monitoring with feedback trial (SWIFT). Consumers help review study designs, lay summaries and manuscripts, and members of a consumer panel in the SWIFT trial participated in grant applications and co-authored publications.
Integrating Evidence: To help consumers find trials occurring near their physical location, the team behind the Australian New Zealand Clinical Trial Registry recently added a map function to their registry website. The map function allows users to search for trials by location. A consumer can pass on this information to their doctor to help assess their eligibility for a trial.