OnCo
ideasIdea

Broad research consent as a routine step of the cancer pathway

Every newly diagnosed patient would be asked, as part of standard care, whether their data and leftover tissue can be used for research, so researchers never have to go back and ask.

Cancer centres such as Memorial Sloan Kettering and the Princess Margaret already consent a majority of patients to institutional research protocols at first visit. The proposal is to make this a nationally standardised pathway step with a common consent text and a shared flag in the record, so that data from consented patients can be pooled across centres without re-consent. Ethics committees would recognise the common consent as sufficient for defined categories of research.

Hypothesis
A common pathway consent recognised by all ethics committees in a country will make more than 80 percent of new patients research-ready at diagnosis and remove re-consent as a barrier in more than 90 percent of retrospective studies.
Rationale
Where institutions have made consent routine, enrolment rates above 70 percent are typical; the problem is that each institution's consent is unique and not recognised elsewhere.
What would test it
Agree a common consent text among five centres and one national ethics body; measure the share of patients research-ready and the number of multi-centre studies that proceed without re-consent over two years.
Maturity
early clinical
Who has to act
clinic
Cost to try
Small (under $1M)
Years to first evidence
2
Bottlenecks it attacks
  • Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
  • Trials enrol too few, too slowly · Fewer than one in ten adults with cancer joins a trial. Trials close for lack of patients, not lack of ideas.

Connected

5top