The Policy Delphi: A Method for Identifying Intended and Unintended
Consequences of Educational Policy
We conducted a modified policy Delphi with expert stakeholders that
involved generating, evaluating, and ranking potential policy options to
address the data sharing issue with cancer variants (with a focus on the
US context). We found policy options in the financial sustainability
domain were highly ranked, particularly stable funding for trusted
entities.
Sir John had laboratories named after him at the Wellcome Trust Sanger
Institute
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Outcomes from the final round of our modified policy Delphi process
revealed that the most feasible, effective, and high-priority policy
options to advance the genomic cancer variant commons were connected to
funders. The policy options included establishing stable funding for
data-sharing initiatives, advancing equity, implementing data quality
standards, strengthening incentives for data sharing, and protecting
privacy and data security.
These prioritized policy options conflict with panelists’ perceptions about
the sustainability of funding for data sharing. Cultural shifts to enable
stable funding for data-sharing initiatives were noted as critical to
long-term success. Equity continues to be a high priority domain to address,
but a clear path forward remains elusive. Data resources are important
actors, but panelists were unconvinced they could resolve the identified
issues alone.
Policy makers should consider these findings, and especially the points to
consider raised by Delphi panelists, to ensure policies are implemented that
facilitate sustainable cancer variant data commons that provide quality
data, protect privacy, promote equity, and improve cancer care.