In 2018 Triple Innovation completed a project to conceptualise and later map an innovative strategy to develop a ‘biobank’ for the fast-growing health precinct on Queensland’s Sunshine Coast.
A scan of existing biobanks worldwide and companion academic literature showed that traditional biospecimen biobanks are expensive to operate, not well characterised or amenable to third party access, and have an in-built redundancy factor, despite the undisputed successes of exemplars like the UK and Estonian biobanks. These biobanks need long-term Government and institutional financial support. Our research also showed that biobanks in Qld and other Australian jurisdictions had excess capacity, or were research specific. All were costly to maintain. Long-term funding was problematic.
The brief was to develop a biobanking model with low upfront capital needs that could be sustainable financially independent of Government support. The model needed to take account of trends in biomedical and public health research, the challenges researchers (research institutions, academic researchers, CRO’s and Pharma) experience as they undertake research, and the need to translate that activity to benefit patient care. This work developed four foundation themes:
1. People (not just patients) are aware of the benefits of medical and public health research. They want access to new therapies and methods of care sooner rather than later. But this latent community support needs to be unlocked;
2. It is costly to recruit patients for clinical trials. Recruitment processes are fragmented and inefficient. 50% of activated sites fail to recruit target numbers;
3. Ethical governance is over-engineered and fragmented. In its efforts to define ethical protocols, in the name of privacy, regulators have lost sight of the patient’s needs;
4. Public health objectives do not sit easily with commercial ‘for profit’ objectives and processes. Collaborating with commercial partners, who can supply world class capabilities, additional funding and accelerate outcomes, is culturally difficult.
The Project developed a model to bring together the community and researchers through a dynamic population database driven by ‘patient’s dynamic consent to access their primary care and secondary care data, genomic and other key lifestyle information. The model was financially sustainable and independent of government but required a path-breaking public-private partnership and cross-Government commitment. It involved the community as a key part of governance co-opting concepts like the ‘Life Be In It’ campaign to create a ‘Research Be In it’ campaign. The model cut through the pain points and clinical trial recruitment costs researchers experience using a single efficient governance highway to attract commercial users. This digitised data model created new relationships between researchers, primary care physicians and patients bringing new technologies to patients and breathing life into the concept of patient centric care. A new model that translates the concept of a specimen biobank into a walking biobank. .
This Project continues to attract much interest and is now being piloted. It shows that it is possible to create public health databases that directly engage the community.
After all, who is not interested to improve their health and lifestyle?