Building a shared clinical trial recruitment platform

Clinical trials often stall because potential participants are identified late, while sponsor teams and busy services work from separate records. Developing a digital platform for sharing clinical trial recruitment data across networks would let authorised teams see relevant studies, referral capacity and screening progress without exposing identifiable information. It would turn recruitment from repeated manual searches into a coordinated clinical workflow.

The model suits Brisbane, where public hospitals, private providers, universities and specialist centres operate side by side, and it can extend to regional Queensland. Patients already rely on smartphones, telehealth, pharmacy visits and My Health Record, so a mobile-friendly route to trial information can fit familiar habits. Trusted care teams and approved patient channels could surface suitable opportunities without asking people to approach every hospital.

Trust must shape the architecture from the start. Personal information handled by Australian organisations is governed by the Privacy Act 1988 and the Australian Privacy Principles, while participation in research requires ethics approval, role-based access and agreements with data custodians. Queensland Health information also sits within state health-records law. A platform should minimise collection, document every secondary use and make the path from referral to consent accountable.

The result would be more than a directory of studies. Shared protocols, eligibility criteria, contact details and waiting-list signals could reduce duplication, speed recruitment and reveal where capacity is underused. It would help patients and clinicians compare options with clearer information, while giving sponsors dependable access to diverse populations without forcing institutions into one database.

Why recruitment information is fragmented

Each institution may record trials in a different research management system, electronic health record or disease registry. Local terms for a tumour, condition or stage can obscure a participant who meets a protocol elsewhere, while contact details and pre-screening results remain outside the trial team. Sponsors then repeat site feasibility work and investigators repeat searches already performed by colleagues.

Fragmentation affects patients as well. People may be suitable for a study in another service but hear about it only after travelling, losing interest or beginning treatment elsewhere. It also limits evidence about which communities are being reached. Shared visibility, with appropriate consent and governance, would make under-recruited cohorts and unused capacity easier to identify.

Designing around clinical workflows

A useful platform would be federated rather than a central warehouse. Each service keeps control of its records while a common layer exchanges trial metadata, coded eligibility variables, referral availability and status updates. Standards such as FHIR, SNOMED CT and consistent ANZCTR identifiers can reduce manual mapping. Protocols should remain authoritative, with local investigators responsible for final eligibility decisions.

Clinical systems could send a referral alert when protocol criteria are met, while trial teams record contact attempts, consent discussions and screening outcomes in their usual workflow. Dashboards should show operational measures, not a raw patient list. Every task needs an owner: a coordinator must know which site has capacity, which investigator accepted the referral and what information remains missing.

Patient-facing features must be plain, accessible and translated into community languages. The network’s health literacy findings show why information cannot be reduced to a database label. Researchers should co-design eligibility explanations and consent pathways with consumers rather than expecting people to understand specialist terminology.

Governance that earns trust

Governance should cover data ownership, custodianship, ethics, sponsorship and incident management in one agreement. The platform does not replace sponsor duties under the Therapeutic Goods Act 1989. A data dictionary, access reviews, de-identification and aggregated reporting should be defaults, with clear terms for any overseas transfer or commercial use.

Consent should be specific enough for secondary research use and separate from routine clinical communication where required. People must be able to understand what is shared, with whom and for how long. Aboriginal and Torres Strait Islander organisations should exercise control over projects affecting their communities, supported by Indigenous data sovereignty principles and community-approved protocols rather than one-off consultation.

An independent oversight group can review access requests, complaints and equity measures. Public reporting should state which data were contributed, how completeness affects interpretation and when findings were corrected. This makes the platform accountable to patients as well as hospitals, universities and commercial sponsors.

Supporting recruitment across Queensland

In practice, a statewide route finder could help a general practitioner in Townsville, a specialist in Brisbane or a nurse in a small rural service identify a study without exposing confidential records. Telehealth can support remote consent and specialist consultations, but referrals still need local coordinators who understand travel, accommodation, language and the practical demands of attending a hospital.

Workflows should account for real behaviour: people may use mobile appointments, call a coordinator during a pharmacy break, or need transport support. A reminder system and plain-language eligibility summary can keep interest active without creating constant notification fatigue. Cross-border learning may also be useful; the Rumah Hijau collaboration offers a comparator for connecting clinical care with wider health networks beyond Australia.

Defining the platform’s value

Success should be measured through faster time from referral to screening, lower duplicate contact, improved representation and stronger retention. Sites should also monitor data quality and the proportion of alerts accepted by investigators. These operational measures are more useful than raw counts of records, which can conceal repeated participation by the same participant.

Clinical variables can be embedded without turning recruitment into automatic decision-making. The network’s frailty assessment guide describes the value of structured frailty assessment before major surgery. Similar data could help investigators identify protocols requiring frailty-sensitive pathways, while clinical judgement remains central to screening.

Moving from pilot to partnership

Delivery should begin with a narrow pilot linking two or three Brisbane services, then expand to regional sites only after consent, security and data-quality tests. Queensland trial sponsors gain a network-wide view of cohort availability and referral bottlenecks, while investigators retain control of screening. A staged release creates evidence for hospitals, funders and commercial partners without attempting immediate statewide scale.

Partnership agreements should cover intellectual property, publication rights, training, data access and sustainable operating costs. The Crossroad partnership guidance can inform this design by treating collaboration as an operating relationship rather than a one-time technology transfer. Shared education and standard referral templates would help coordinators work consistently across metropolitan and regional settings.

Through its existing network, Brisbane Diamantina Health Partners can convene health services, universities, trial sponsors, consumers and Indigenous organisations to agree the pilot specification. Register interest for the pilot, governance workshop or consortium submission, and nominate a study team, consumer voice or data representative to join the next cohort.