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Community-Engaged Practice Based Research: The Mayo Clinic Experience

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Community-Engaged Practice Based Research: The Mayo Clinic Experience Paul V. Targonski, MD, PhD Director, Mayo Clinic Health System Practice Based Research network – PowerPoint PPT presentation

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Title: Community-Engaged Practice Based Research: The Mayo Clinic Experience


1
Community-Engaged Practice Based Research The
Mayo Clinic Experience
  • Paul V. Targonski, MD, PhD
  • Director, Mayo Clinic Health System Practice
    Based Research network
  • September 15, 2011

2
Brief Outline
  • There is no such thing as translational research
  • Community engagement is a set of universal
    principles beyond research
  • Scientists cant make the national research
    enterprise successful without some help

3
National Institutes of Health
  • The nations medical research agency
  • 27 institutes and centers
  • 30 billion annually
  • Funds approximately
  • 50,000 competitive grants
  • 325,000 investigators
  • 3000 universities, medical schools and research
    institutions
  • 6000 intramural scientists with 10 of budget

4
What is Translational Research?
  • the conversion of basic research advances into
    products that can be tested on humans.archives.wh
    o.int/prioritymeds/report/FinalRep/GlossaryREPFIN.
    doc

5
What is Translational Research?
  • To improve human health, scientific discoveries
    must be translated into practical applications.
    Such discoveries typically begin at the bench
    with basic research in which scientists study
    disease at a molecular or cellular level then
    progress to the clinical level, or the patient's
    bedside.

Scientists are increasingly aware that this
bench-to-bedside approach to translational
research is really a two-way street. Basic
scientists provide clinicians with new tools for
use in patients and for assessment of their
impact, and clinical researchers make novel
observations about the nature and progression of
disease that often stimulate basic investigations.
http//nihroadmap.nih.gov/clinicalresearch/overvie
w-translational.asp
6
The Traditional Biomedical Model
  • 17 years from discovery to practice
  • For the lt15 of studies that actually make it
    that far
  • And only 5 are applied in practice with their
    originally intended use
  • Minoxidil and hair growth versus blood pressure
    control
  • Hence the federal support of translational and
    practice-based research!

7
What is Translational Research?
  • Translational research includes two areas of
    translation. One is the process of applying
    discoveries generated during research in the
    laboratory, and in preclinical studies, to the
    development of trials and studies in humans. The
    second area of translation concerns research
    aimed at enhancing the adoption of best practices
    in the community.

http//grants.nih.gov/grants/guide/rfa-files/RFA-R
M-06-002.html Institutional Clinical and
Translational Science Award
8
Translational Research
  • T1 seeks to move a basic discovery into a
    candidate health application.
  • T2 assesses the value of T1 application for
    health practice leading to the development of
    evidence-based guidelines.
  • T3 attempts to move evidence-based guidelines
    into health practice, through delivery,
    dissemination, and diffusion research.
  • T4 seeks to evaluate the real world health
    outcomes of a T1 application in practice.

TRIP
Community Engagement?
http//medicalcenter.osu.edu/research/translationa
l_research/Pages/index.aspx
9
What is practice based research?
  • Practice-based research is a systematic, rigorous
    and collaborative inquiry by teams of healthcare
    providers, community experts, scientists and
    other stakeholders into the systems, methods,
    policies, programmatic applications and
    population-level outcomes of health care practice
    in order to discover new information, generate
    new ideas, and implement innovative solutions to
    the existing paradigms of care to further improve
    care to patients, populations, and communities.

10
Why Practice-Based Research?A Typical Month of
Healthcare in the United States
Green LA et al N Engl J Med 344(26)2021, 2001
11
Definitions
  • Practice-based research network A group of
    ambulatory practices devoted principally to the
    primary care of patients. Typically, PBRNs draw
    on the experience and insight of practicing
    clinicians to identify and frame research
    questions whose answers can improve the practice
    of primary care. By linking these questions with
    rigorous research methods, the PBRN can produce
    research findings that are immediately relevant
    to the clinician and, in theory, more easily
    assimilated into everyday practice."
  • Agency for Healthcare Research and Quality,
    http//www.ahrq.gov/research/pbrn/pbrnfact.htm,
    last accessed June 2, 2011

12
United States PBRN Environment
  • Networks
  • Medical
  • Dental
  • Nursing
  • Pharmacy
  • Public Health
  • Federal Funding
  • NIH
  • AHRQ
  • CDC

13
MCHS PBRN
  • A large network of small affiliated/integrated
    practices
  • 1150 providers, 75 practices, 9 hospitals,
    650k patients, in 3 states
  • Vision Healthier patients and communities
    through the scholarship of health practice.
  • Mission Solving the problems of health care
    practice to improve the health and health equity
    of patients and communities.
  • The vision, mission and membership reflects our
    definition of community and role.

14
Network Provider Comparison with MN/WI State
Providers
Provider Characteristics Chi-Square df p-value
Age group 2.27 3 0.519
Gender 5.33 1 0.021
Years in practice 4.12 4 0.390
Specialty 15.46 8 0.051
15
MHS PBRN Survey Participatory and Educational
Research Interest
16
Respondent Interest in Participation in
Practice-Based and Translational Research
Research Type of
respondents somewhat very
interested interested Clinical Trials
57 26 Research that examines the cost or
financing of health care 36 24 Research
that examines access to and use/delivery of
health care 41 27 Research that examines
health care quality and health care outcomes
38 40 Disease-specific studies
involving direct human subjects testing
46 29 Disease-specific studies involving chart
review (no direct subject contact) 45 20
17
MHS PBRN Survey Interest in Research Roles
Among Respondents
Review proposals and provide feedback
Recruit participants for ongoing studies other
than my own
Develop research ideas to share or for others to
implement
Participate in others studies
Run an occasional study in an area that interests
me
Run a sustainable program of research
18
MHS PBRN Survey Previous Research Experience
Among Respondents
Helped recruit participants to clinical research
studies
  • Examples of Other Experiences
  • REP Studies
  • Direct data collection
  • Developed project but couldnt get it funded
  • Masters thesis
  • WREN office-based research participant
  • Basic science research with NIH/AHA support
  • Ran the PROS network for North Dakota
  • IRB approved project, not taking off because of
    lack of funds
  • Airborne allergens in Middle East

Collaborated or served as a co-investigator In
clinical research studies
Led studies (PI)
Other
19
Motivation Interest Relevance
  • I'd be very interested in clinical effectiveness
    trials of various treatments, approaches, drugs,
    et cetera.
  • If there was an interesting study being
    conducted. I probably would be able to find some
    time to participate.
  • I think for me it would have to be meaningful
    and have to have come clinical aspect to it,
    whether it's at the evaluation stage or during.

20
Research Value to Practice
  • Both the Administrators and Providers spoke of
    the value of research to the Health System
  • You know value is often defined here as quality
    over cost and if it increases quality it
    increases value. If it decreases costs it
    increases values. So if we can find things to do
    to good treatments and therapy cheaper you know
    we're enhancing value. Administrator
  • We definitely see interest in the physicians
    primarily where it relates to practice
    innovations in clinical trials. Administrator
  • If we look at clinical excellence as being a
    part of the mission, that could certainly help
    promote clinical excellence. Provider

21
Research - Value to Practice
  • I think that research actually helps to
    stimulate the people that are involved in it in
    the organization because it keeps us involved in
    thinking and trying to innovate and interested in
    improving care for our patients and for our
    system.
  • I think it's beneficial to me because I believe
    it gives me an opportunity to provide some input
    into the organization and the way we operate and
    our degree of success

22
Levels of Research Engagement
  • Level 0... no involvement in research but an
    expectation that one would support colleagues
    involved in research
  • Level 1... being aware of studies open at ones
    site and willing to identify patients who may be
    appropriate for participation/ enrollment
  • Level 2... level 1 involvement plus willingness
    to be involved in data collection
  • Level 3... being a PI or co-PI on one or more
    studies
  • Level 4... greater involvement in research,
    e.g., site research leadership role

- Time
23
What is Community Engagement?
24
Definitions
  • Community A community can be described as a
    group of people who share some or all of the
    following geographic boundaries a sense of
    membership culture and language common norms,
    interests, or values and common health risks or
    conditions (IOM, 1995 Jewkes and Murcott, 1996
    Ruderman, 2000 Ricketts, 2001). Members of
    communities typically experience the shared
    reality of living or working in the same location
    or environment and so are in a position to
    influence and be influenced by the social,
    economic, and physical risk factors in that
    environment (Roussos and Fawcett, 2000 Kreuter
    et al., 2001). IOM, The Publics Health in the
    21st Century, 2002, pp178-179

25
What is Community Engagement?
  • Community engagement is a dimension of Public
    Participation.
  • In research, community engagement is a process of
    inclusive participation that supports mutual
    respect of values, strategies, and actions for
    authentic partnership of people affiliated with
    or self-identified by geographic proximity,
    special interest, or similar situations to
    address issues affecting the well-being of the
    community of focus.
  • Community engagement is a core element of any
    research effort involving communities. It
    requires academic members to become part of the
    community and community members to become part of
    the research team, thereby creating a unique
    working and learning environment before, during,
    and after the research.

NIH Council of Public Representatives http//copr.
nih.gov/reports/Definitions_of_CE_and_PP_Revised_5
08.pdf
26
Definitions
  • Community Engagement Applying institutional
    resources (e.g., knowledge and expertise of
    students, faculty and staff, political position,
    buildings and land) to address and solve
    challenges facing communities through
    collaboration with these communities. The
    methods for community engagement of academic
    institutions include community service,
    service-learning, community-based participatory
    research, training and technical assistance,
    capacity-building and economic development.
    Community engagement is not necessarily
    scholarship.
  • Gelmon SB, Seifer SD, Kauper-Brown J and
    Mikkelsen M. (2005) Building Capacity for
    Community Engagement Institutional
    Self-Assessment. Seattle, WA Community-Campus
    Partnerships for Health. http//www.ccph.info
  • Community Placed Research Research that involves
    study procedures conducted in an organized
    community setting (outside an academic medical
    center). Involves a one time or short-term
    relationship between the investigator and the
    community, with limited community involvement
    beyond being a venue for recruiting research
    participants or for implementing research
    procedures. (U of MN)
  • Performance of Community Based Research,
    http//www.ctsi.umn.edu/community/assets/Community
    BasedResearchGuidance.pdf, last accessed June 2,
    2011

27
Principles of Community Engagement
  • Investigators and communities understand what
    community engagement in research means
  • Strong community/investigator partnership
  • Communities and investigators share power and
    responsibility equitably
  • Equitable inclusion of diverse perspectives and
    populations
  • Clear and relevant research goals
  • Mutual benefit
  • Capacity building
  • Respect and recognition
  • Continuous communications
  • Transparent monitoring and evaluation process
  • Appropriate policies regarding ownership and
    dissemination of results
  • Translation of research findings into policies,
    interventions, or programs
  • Sustain the relationship and the research outcomes

NIH Council of Public Representatives http//copr.
nih.gov/reports/Definitions_of_CE_and_PP_Revised_5
08.pdf
28
How is NIH community engagement?
  • NIH Directors Council of Public Representatives
  • NIH National Center of Research Resources?
  • Clinical and Translational Science Awards
  • Community Based Participatory Research
  • Practice Based Research Networks

29
NIH Values for Investigators Who Want to Engage
Communities in Their Research
  • Investigators and communities understand what
    community engagement in research means
  • Strong community-investigator partnership
  • Communities and investigators share power and
    responsibility equitably
  • Equitable inclusion of diverse perspectives and
    populations
  • Clear and relevant research goals
  • Mutual benefit
  • Capacity building
  • Respect and recognition
  • Continuous communications
  • Transparent monitoring and evaluation process
  • Appropriate policies regarding ownership and
    dissemination of results
  • Translation of research findings into policies,
    interventions and programs
  • Sustain the relationship and the research
    outcomes

NIH COPR Community Engagement Framework for
Development of Education/Training For Researchers
30
Challenges of Community Engagement
  • Scientists
  • Engagement and Collaborative Skills
  • Community Expectations
  • Academic
  • Institutional
  • Funder
  • Local partner
  • Incentives/Professionalism
  • Resources
  • Partners?
  • Funds
  • Methodologies
  • Communities
  • Engagement Skills
  • Collaboration
  • Organization
  • Fund of Research Knowledge
  • Interest
  • Incentives
  • Resources
  • Partners?
  • Time

31
Challenges for CEPBR
  • IRB issues (coverage, others)
  • FWA support and community protections
  • Many providers and many sites (many potential CBO
    contacts to manage)
  • Geographic dispersion complicates communication
    and relationship-building
  • Representativeness of networks and network CBO
    partnerships for generalization of results
  • Disparity of expectations for timing and rigor

32
Challenges of Community Engagement
33
Approaches
  • Bottom-up capacity for community idea generation
  • Inventory of academic technical skills
  • Offer to communities as a resource for project
    and program evaluation
  • Community advisory boards
  • Communication mechanism to solicit and provide
    feedback from communities

34
Approaches (cont)
  • Identify network member champions who are engaged
    with community
  • Clear mission/vision that involves work outside
    the medical practice
  • Establishing network values and principles that
    promote and respect community partnership (COPR)
  • PRINS-like inventory of communities

35
Example of Community Partnered Practice-Based
Research Community Health Workers in the
Advanced Transdisciplinary Health Care Home
Intended to explore how coordination of medical
team models with community services could reduce
health disparities Improvements in preventive
service and chronic disease management outcomes
directly impacted practice modification
  • Improved Practice Outcomes
  • Team Care Best Practices
  • HCH Certification Support
  • State Policy Impact
  • National Exposure
  • Direct Impact on Practice and Community Health
  • Partnerships with Community
  • Skills/Methods Development
  • Staff Career Development
  • Community Capacity
  • Expansion to other practices and grants

Practice-Based Research Network
36
Take home messages
  • The translational research process is a paradigm
    shift
  • But one that really can enhance moving
    discoveries into practice
  • Community engagement can and should occur and add
    value to all research
  • Incentives and resources must better align if
    community engagement is to improve the
    translation of research into practice

37
Many people say that it is the intellect which
makes a great scientist.They are wrong it is
character. - Albert Einstein
38
Thank You!
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