LH NOTE: HAVING PROBS WITH EXCEL SHEET LINKED. ASK JS FOR ADVICEPatient advocatesAcademic groups, e.g., Harvard Med School, Duke Medical Center, PGRN, Broad InstituteGovernment groups, e.g., IOM, Eval of Gen Applic’s in Practice & Prev, CDC, FDACross-cutting groups, e.g., GPPC, CMTP Health plans & payers, e.g., 6/7 largest health plans, Medco (PBM)Although Center is not conducting work for pharma or dx co’s, we do incorporate their perspectives
Apply toolbox to understanding health policy issuesHow to balance 3 key issues in HC: The need to provide access to care – fairness in who gets what careThe need to have high quality care – people get care they needBut also need to be efficient by focusing on high value care - don’t waste resourcesMy field called HSR – study of how we organize, deliver, & pay for HC- HS researchers work with basic & clinical scientists to solve health policy problems
Specific focus: Taking toolbox and applying it to emerging technologiesPersonalized/precision medicine – the study of how to target health care to patients based on their genetics- Question: How do we take new discoveries about the genetic nature of disease and actually use them to improve patient outcomes – while also doing what’s right for our health care system and society?
Human genome sequenced only 20 years agoHuge advances in what we know about nature of disease – but now need to figure out what to do with all of this info
Figure shows….1993 – maybe 100Now – thousandsNot only cancer but heart disease, diabetes, asthma, mental conditions – and many more
Can now sequence entire genome$100M in 2001 to almost $1K in 2012 Example - Steve Jobs - $100K before he died in 2011Bottleneck is no longer technology – but what to DO with informationWGS provides different types of infoHave disease right now that can be treated – really want to knowTerrible disease that will kill you in your prime – and there is no tx – maybe you don’t want to knowLots of info that tells you that you have something – but we have no idea what to do about it!
Current study on WGS- But as noted, WGS provides a lot of info, some of which is useful and some not or even harmfulTechnology threatens to outpace ability to use info to improve pt outcomesI’m looking at - What information do patients and providers want to know or don’t know to know about genetic makeup?How can health payers, guideline organizations, and society facilitate the appropriate use of WGS while at the same time not opening “Pandora’s box”?
Panacea or Pandora's Box? The $1,000 Genome is Here - Now What Do We Do?
The Center for Translational andPolicy Research on PersonalizedMedicineTo improve patient outcomes, new technologies mustmove through the Translational Continuum…. Adoption Basic Clinical Policy Research Adoption Outcomes Research Research …and we must answer these questions…. How do we trade-off between What evidence do Who has access to decisionmakers preferences, costs, How can we interventions? need? and benefits? consider diversity? How to translate knowledge to real world?
Health Plans Patient and Payers AdvocatesPharmacy Academic Benefit GroupsManagers TRANSPERS is Integrated Across StakeholdersIndustry & Government Venture Groups Capital Labs Professional Organizations
TRANSPERS UsesToolbox of SocialScience Approaches& Methods…
New TRANSPERS Study Benefit-Risk Tradeoffs for Whole Genome Sequencing• How do patients and providers value information provided?• Will sequencing will be covered by payers?• Will value outweigh costs? – PI: Kathryn A. Phillips UCSF, 2013-2017, $2.4M – With Harvard Medical School
For More Informationhttp://transpers.ucsf.eduTRANSPERSinfo@ucsf.eduPhillipsK@pharmacy.ucsf.edu