Partnering with Patients, Practices and Communities in ... 2014 Ann Bonham...Partnering with...
Transcript of Partnering with Patients, Practices and Communities in ... 2014 Ann Bonham...Partnering with...
Partnering with Patients,
Practices and
Communities in Clinical
Implementation and
Dissemination Research
Ann Bonham, Ph.D.
Chief Scientific Officer
August 2014
1. Setting the context:
The national landscape
2. The “tipping point” for
community engagement and
dissemination?
3. Thoughts on the “how to’s”
4. Peeking over the horizon
5. Opportunities and levers for
CTSA CE
Healt
h m
Set discretionary spending at $1 trillion in FYs 2014-15
($ in billions) FY 2013
FY 2014
w/ seq.
FY 2014
revised1
FY 2015
revised1 FY 2016
Defense $518 $498 $520 $521 $523
Nondefense $468 $469 $492 $492 $493
Total $986 $967 $1,012 $1,014 $1,016
2013 Budget Control Act
Proposals Currently Before Congress
S. 2115, “American Cures Act,” H.R. 4384, “America HEALS Act,”
• Would create mandatory biomedical research trust
fund to increase $ for NIH, others by inflation + 5%
• No “offset” (savings) to pay for bill = no Republican
cosponsor
21st Century Cures Initiative • Energy and Commerce Health Subcomm.’s
bipartisan exploration of ways to accelerate
identification, development of new cures, treatments
• No legislation this year, just study and hearings
Accelerating Biomedical Research Act
• Proposes to lift the budget cap on the NIH without
triggering an offset requirement
• Would allow more predictable, sustainable growth,
restoring agency purchasing power to what it would have
been had it kept pace with inflation since before
sequestration
• No Republican cosponsor
American Compete Reauthorization Act of 2014
• Authorizes stable and sustained increases in
federal research and development funding for
NSF and NIST.
• Addresses agency efforts to increase
participation in STEM fields, including among
women and minorities.
Compelling
health needs
Increasing
calls for data
sharing
Growing
voice of
patients in
research
Emerging Technologies
PCORnet
Expanding science and
workforce needs:
CER,
Informatics
Implementation
Science
Increasing
calls for
outcomes
and metrics
that matter
Affordable
Care Act
1. Setting the context:
The national landscape
2. The “tipping point” for
community engagement and
dissemination?
3. Thoughts on the “how to’s”
4. Peeking over the horizon
5. Opportunities and levers for
CTSA CE
Healt
h m
A convergence of interest
The CTSA Program at NIH:
Opportunities for
Advancing Clinical and
Translational Research
IOM Committee to Review the CTSA
Program at NCATS
AAMC Research Assessment and
Communication Initiative
Health Equity Research Expert Panel
Clinical Outcomes Research Expert Panel
Foundational & Basic Science Research Expert
Panel
What we learned from engaging community
stakeholders on metrics for assessing community-focused research benefits
18 gender, geographic and ethnically-diverse community
members engaged through interviews and focus groups.
Community
based
organizations
Community
advisors
Community
based –
researchers
Other
identified
community
stakeholders
…better engagement in dissemination
“We want information about the outcomes that are
matched to health and wellness priorities we have
identified in our communities, packaged in an
accessible way (language, brevity, linking to local
setting) and easily useable in teaching others (via
clinic, schools, health and social services settings).”
Quote from a community engagement partner
Eder et al: A Logic model:
CTSA Community Engagement
Eder MM, et al. Acad Med. 2013 Oct;88(10):1430-6.
Inputs Short-term
results
Intermediate
results Impact
Better processes and practices
• Infrastructure
• Education
• Improved IRB
• Promotion/tenure
capacity for
dissemination
• Funds/resources
• Bidirectional trust
• Community research
capacity; CBOS,
practices, hospitals
• Stronger
relationships with
communities
• Novel methods
• Ethical framework
• Community
empowerment and
trust of university
• Community and
university PI teams
• Joint questions,
study designs, data,
analysis, publications
• Workforce
• Recruitment/retention
Better science
Better answers
Better population health
• Community leading
Implementation
and Dissemination
• Community leading
Implementation and
Dissemination
(and included)
Gray Bars:
Means criterion scores
across criteria for
knowledge exchange
from 25 exemplar
research grant
proposals
Criteria for assessing knowledge
exchange plans in research
Source: www.implementationscience.com/content/9/1/93
1. Setting the context: The
national landscape
2. The “tipping point” for
community engagement and
dissemination?
3. Thoughts on the “how do you do
implementation research?”
4. Peeking over the horizon
5. Opportunities and levers for
CTSA CE
nc
e
Translational
Pre-Clinical
Research
Implementation
Research
(CER)
Community-
engaged
research
Basic
Science
Health
system
research
The Research Spectrum
Better processes and
practices
Better
science
Better
answers
Better population
health
Practice
Guidelines
Patient or
group
behaviors
Implementation
Strategy (ies)
Conducting implementation after
completion of the study or intervention
Better processes and
practices
Better
science
Better
answers
Better population
health
Health
system
Intervention
Implementation
Strategy (ies)
Intervention
Simultaneously conducting the
intervention (CER, etc) and implementation
research
Better processes and
practices
Better
science
Better
answers
Better population
health
Health
system
Implementation
Research
Intervention
Health
system
Implementation
Trial 1
Implementation
Trial 2
Comparative Implementation Research
(CIR) in the same community
…”Comparative community engagement
research”
Better processes and
practices
Better
science
Better
answers
Better population
health
Health
system
An Example: “Community Partners in Care” in LA, compared
implementation strategies to help under-resourced
communities to improve their services to clients with
depression
Implementation
Research
Community Engagement
Community agencies brought together to fit the same
quality improvement programs to the needs and
strengths of their communities.
Implementation
Trial 2
Implementation
Trial 1
Expert Consultation
Health experts provide technical assistance to
community groups to adapt quality-improvement
programs proven to work well in improving
depression care.
Implementation
Trial 1
Implementation
Pilot Study
Intervention
Implementation
Scaled Locally
Implementation
Spread to other
Sites
Post
Implementation
Evaluation
Staging the implementation research- from
pilot – to scale – to spread
Better processes and
practices
Better
science
Better
answers
Better population
health
Health
system
Engagement in implementation and
dissemination requires engagement at the
beginning.
1. Setting the context:
The national landscape
2. The “tipping point” for
community engagement and
dissemination?
3. Thoughts on the “how to’s”
4. Peeking over the horizon
5. Opportunities and levers for
CTSA CE
Open Science, Data Sharing,
Reframing of Privacy
“In today’s highly connected world – a discovery
made somewhere is soon known everywhere.”
1.
China
Japan Germany S. Korea Japan
Canada
US
Global Networks:
from “global competition” to “global
collaboration” and engaging communities
across the globe
2.
Increased emphasis on engagement across the spectrum of research
3.
More and “new” partnerships 4.
Greater emphasis on cost and value
Cost
containment in
population
care (beyond
hospital walls):
Cost
containment in
research:
5.
1. Setting the context:
The national landscape
2. The “tipping point” for
community engagement and
dissemination?
3. Thoughts on the “how to’s”
4. Peeking over the horizon
5. Opportunities and levers for
CTSA CE
PCORNet:
A preview of what’s to come
• CDRNs and PPRNs trailblazing the
infrastructure, agreements and proof of
concept studies
• Massive networks for data sharing
• Convergence of partnerships between
PCORI and NIH CTSAs
• Unprecedented capacity-building for community
engagement in implementation and dissemination
1.
Community Health Needs Assessments
(CHNAs)
Source: Preliminary results from AAMC Community Health Needs Assessment (CHNA) member survey 5-30-14
R Expanded requirements under ACA
R Communities engaged every 3 years to prioritize health needs
R CHNAs must include an implementation strategy
AAMC surveyed 501c3 teaching hospitals
(n = 113)
Who played significant roles in conducting
the CHNA?
82%: senior hospital leaders
67%: community leaders
33%: researchers
4%: trainees/residents
RESEARCH
EDUCATION
CHNA
CLINICAL CARE
COMMUNITY
2.
Population health 3. Data sharing
and mining
Comparative community engagement strategies
…in the end…it’s about…
…the social contract and privilege of improving
the dignity, well-being and health of others
through research
©
Engage CTSA
CE lead,
Research Dean,
CHNA lead,
Community
Rep(s)
Inventory/
document all
community-
engaged PIs,
programs &
initiatives & their
connections to
patients & CBOs
Collectively
develop “rules
of the road”
for community
engaged
research
Engage
community in
“kicking the tires”
on current
research
activities, outputs
& impacts
Coordinate
going forward-
generalize the
benefits
Member Capacity Building Advocacy
www.aamc.org/healthequity
“Snapshot” Health equity “virtual site
visit”
Spotlight on disparities-focused HSR
RESEARCH
EDUCATION
CHNA
CLINICAL CARE
COMMUNITY
New ROCC Health Equity Subgroup launched with 25 members
AAMC Commitment to Community
engagement and health equity