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
• September 15, 2011

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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

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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

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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

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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
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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!

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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
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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
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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.

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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
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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

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United States PBRN Environment

• Networks
• Medical
• Dental
• Nursing
• Pharmacy
• Public Health
• Federal Funding
• NIH
• AHRQ
• CDC

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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.

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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
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MHS PBRN Survey Participatory and Educational
Research Interest
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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
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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
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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
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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.

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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

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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

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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
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What is Community Engagement?
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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

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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
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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

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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
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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

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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
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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

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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

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Challenges of Community Engagement
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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

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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

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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
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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

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