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Breakout A: Policies governing data access for research and personalization of
care
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1. What current policies limit access to and the use of data for
personalization of care?
What best
practices, guidance, or strategies to “get to yes”
exist? [If a path to use does not exist], who
should modify the existing policies and what would the wish list for
that modification be?
2. What policies exist around consent for reuse of data for personalizing
care and enabling research? Are there precedents or analogous policy
structures in other domains? 3. What should be the policy basis (and incentives) for providers, patients,
and vendors to provide access to data across medical record systems?
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Breakout B: Policies regarding knowledge representation
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1. Are policies
and/or best practice guidelines needed for initial and future reannotation and
interpretation of genomic and other high-volume data for clinical purposes,
given that annotation and interpretation is expected to change as scientific
understanding grows? 2. Are policies and/or best
practice guidelines needed to support representing data and knowledge in
electronic clinical systems in a manner that facilitates automated decision
support logic as well as representation in human-readable formats (ie,
documentation formats)? 3. What is needed to
incorporate the approaches from Nos. 1 and 2 in health IT environments so that
knowledge can be applied to screening, patient management, tracking, and
reporting?
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Breakout C: Policies for data integrity and preservation
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1. What policy issues could affect the integrity and persistence of the data
needed to achieve the goals of personalizing medicine? 2. What policies are needed to permit data to be safely shared across
distributed platforms? 3. What research is needed to identify policy gaps and barriers that impact
persistence and integrity of the data and how should this research be
funded?
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