20122017 A Public Health Stakeholder Consultation CoAuthors Toby Citrin JD tcitrinumichedu Center for Public Health and Community Genomics Stephen M Modell MD MS modumichedu ID: 778009
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Slide1
PRIORITIES FOR PUBLIC HEALTH GENOMICS2012-2017
A Public Health Stakeholder Consultation
Slide2Co-Authors
Toby
Citrin
, JD
tcitrin@umich.edu
Center for Public Health and Community Genomics
Stephen M.
Modell
, MD, MS
mod@umich.edu
Center for Public Health and Community Genomics
James O’Leary, BS
Genetic Alliance
Slide3Presenter Disclosures
The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:
No Relationships to Disclose
Slide4Our Assignment from CDC/OPHGApril-December 2012
Center for Public Health & Community Genomics
Consult stakeholders from public health community (academe, practice and community) on the future of public health genomics in the next five years
Collect, categorize, analyze input
Report findings at a wrap-up conference and in a written report
Genetic Alliance
Convene and organize the wrap-up conference
Slide5Planning Committee
Academe
Karen Edwards
Sharon Kardia
Barbara Burns McGrath
Sara Shostak
Practice
Sylvia Au
Suzanne Cupal
Deb Duquette
Karen Greendale
Slide6Planning Committee (Cont’d)
Community
Winona Hollins-Hauge
Imogene Wiggs
Ex Officio
Ella Greene-Moton (community liaison)
Dean Hosgood (APHA Genomics Forum)
Slide7Center Staff
Toby
Citrin
Judy
Daltuva
Nora
Isack
Megan
Knaus
Sally Meyer
Stephen Modell
Tevah
Platt
Slide8Slide9RFI Responses
62 responses
Site for review of responses:
http://www.regulations.gov/#!
docketDetail;dct=FR+PR+N+O+SR+PS;rpp=10;po=0;D=CDC-2011-0008
Spreadsheet and summaries in background materials of written report
Slide10Interviews (9)
Practice
Jean
Chabut
Maxine Hayes
Stephen
Teutsch
Deborah Klein Walker
Academe
Wylie Burke
Kim
Kaphingst
Chris
Kuzawa
Ken Olden
Community:
Chickezie
Maduka
Slide11Informal Discussions (3)
National Community Committee – Special Interest Group on Genomics
Public Health Practice
Genetic Alliance Annual Meeting – “breakfast discussion”
Slide12Process Involved
Selection of Planning Committee
Themes identified from literature
RFI data organized into Word tables and mapped on
Nvivo
Planning
Cmte
. summary data review
Topics areas and sub-themes refined
Data organized into recommendations, then refined after Bethesda meeting
Compilation of final report
Slide13Literature Review
Workshops – Conferences – Reports - Program Reviews & Strategic Plans
Articles on the Future of Public Health Genomics
Articles on Stakeholder Consultation
Slide14Other Studies; Reports
Healthy People 2020
CDC/OPHG 10
th
Year Report (2008)
HRSA Strategic Plan
NHGRI Strategic Plan
IOM Roundtable on Translating Genomic-based Research for Health
GAPPNet
Public Health Genomics Conference (2010)
SACGHS Education & Training Report (2011)
NHGRI Genomic Literacy Conference (11/2011)
Slide15Procedural Strengths
Preliminary work already done by CDC Office of Public Health Genomics
Combination of federal RFI and University expertise allowed for quick turn-around
Knowledgeable Planning Committee advised on both general (e.g., frameworks) and specific (e.g., structuring of meetings) items
Umbrella community and genetics advocacy organizations aided in recruitment and information gathering
Slide16Procedural Weaknesses
Federal restriction to 9 key informant interviews
Scope of the project limited the number of assessment avenues. Wiki had to be deferred.
Short time window influenced information collation techniques used.
Slide17The ContextPast, Promise and Potential
Progress in specific interventions, e.g.:
Newborn Screening
BRCA and Lynch Syndrome testing
Sudden cardiac death
We’re a “half-way technology” needing translation, evidence and guidelines
Near unanimous agreement by “insiders” on broader promise of public health genomics
Lack of understanding or appreciation by “outsiders” of potential value of genomics to all of public health
Slide18What We Learned
Slide19Education
Slide20What We LearnedEducation -Health Literacy -
Professional Training
Need for education of
the workforce (See SACGHS Report)
The public (“we’re still
genomically
illiterate”)
K-12
policy makers
Slide21What We LearnedHealth Applications:
Chronic Disease – Family Health History
Increased emphasis on family history
Utilization by health depts. for risk identification and early implementation of preventive measures
Integration with EMRs – bridge between public health and medicine
Need for validation, integration, marketing
Slide22Research
Slide23What We LearnedResearch: Translational – Impact on
Health Outcomes
Research base for decisions on screening
Cost-effectiveness of genetic technologies (e.g., family history)
“Research [providing]
evidence that
the segmentation
of populations by genomic characteristics
would…achieve
greater effectiveness
and efficiency
across a range of public health interventions, especially in the fields of obesity, diabetes, stroke, cancer and heart disease, and
in neurodegenerative
disorders
.” – Ron
Zimmern
Slide24What We Learned
Research: Translational – Impact on
Health Outcomes (Continued)
“…public
health genomics demands that we understand—and address—how unequally distributed exposures, resources, and other factors outside the body enter into molecular processes to shape health and illness within and across populations
.” – Sara
Shostak
Slide25What We Learned
Research – Infrastructure and Focus
Integration of data sets/registries/tissue banks for research
Database cataloguing genetics, physical and social environment, determinants of health
Research focus toward public health goals and
methods
Role of CDC/OPHG – warehousing, guidance; “ushering” through the translation process
Slide26Slide27What We LearnedAssurance – Evidence Base
Systems providing information on validity and utility of genetic tests
e.g., EGAPP but not as slow
OPHG role as trusted source of evidence
“Leverage electronic healthcare infrastructure to achieve several goals: outcomes research, quality improvement, decision support.”
RFI Response
Slide28Policy Development
Slide29What We LearnedPolicy Development
Population level genetic screening
Utilization of family health history
FDA oversight of genetic tests
Advisory panel on multiplex screening
Regulation of direct-to-consumer testing
Slide30Funding
Slide31What We LearnedFunding
Support for state-level utilization of genomics professionals
Support for integration of genomics throughout public health practice
Funding of gene x environment research bridging between medicine and public health
Funding CBPR utilizing genomic approaches
Funding to assure equal access to genetic testing
Slide32Collaborations - Partnerships
Slide33What We LearnedCrosscutting:Collaborations - Partnerships
Personalized medicine advisory board within OPHG
NIH, AHRQ, CDC, CMS collaboration on evidence-based approaches
State level: Chronic disease, labs, MCH and NBS collaboration
Slide34What We Learned
Crosscutting:
Collaborations – Partnerships (Cont’d)
Schools of Public Health with State Health Departments
Public-Private (e.g., with DTC companies)
Transdisciplinary
research teams (genetics, social, behavioral)
Enhanced stakeholder engagement, coordination and leadership
Slide35Role of CDC/OPHG in Furthering Collaborations and Partnerships
Convener, e.g.,
with PRCs; chronic disease programs
Fostering interdisciplinary research
Advocate
Liaison with APHA Genomics Forum
Need for Advisory Group of stakeholders
Slide36Frameworks for Organization
Core Functions (IOM “Future” 1988)
From Genes to Public Health (
Khoury
, AJPH, 1996)
Core Functions & Essential Services
Public Health in America – 1994
ASTHO - 2001)
Ecological View (IOM “Future” 2002)
Strengthen all sectors of public health
Slide37Health DisparitiesCommunity Engagement
Slide38What We LearnedHealth Disparities
Community Engagement
Gene x Environment – Epigenetic Research focused on health disparities
Community-Based Participatory Research incorporating genomics (e.g. by PRC’s)
“continue
to seek out [the grassroots voice of the community], embracing the idea that community lies at the heart of public health
….”
– Ella Greene-
Moton
Slide39Priorities ConferenceSeptember 14, 2011
Over 70 leaders in public health genomics
Academe, public health, health care, community
Slide40Priorities ConferenceOverarching Objectives
Improve public education about genetics through community engagement
Continue working on issues related to evidence development
Take a bottom-up approach to technology development
Slide41Priorities ConferenceOverarching Objectives
Embed genetics into all aspects of healthcare
Expand public health screening programs that utilize genetic information
Relates to cascade screening recommendations in earlier presentation by Scott Bowen, et al
Slide42Summary
PH Genomics has already achieved an impressive track record in addressing less common diseases and has demonstrated its significant potential to advance all areas of public health
Currently available genetic tools still need to be embraced by public health (e.g., those described by Scott Bowen, et al, earlier in this session)
Realizing the future potential of PH genomics will require
Leadership and a common vision
Collaboration among currently separate groups
Infrastructure and education
Advocacy to secure resources and policies
Slide43Written Report – email:tcitrin@umich.edu