Practical Applications of CBPR to Clinical and Translational Research

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Practical Applications of CBPR to Clinical and
Translational Research

• Robert Williams, MD, MPH
• Gina Cardinali, MSW
• Gina Urias-Sandoval, BA
• Andrew Sussman, PhD, MCRP

hsc.unm.edu/rios
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Objectives

• Review core principles of CBPR
• Examples of CBPR principles in action
• Consider the application of CBPR to clinical and
  translational research

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The Plan in Four Parts

• Part 1 Review CBPR core principles
• Part 2 Examples of engagement with communities
  in support of clinical and translational research
• Part 3 Example of application of CBPR to
  clinical and translational research
• Part 4 Consider strategies for applying CBPR
  principles

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Part 1Review CBPR core principles
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Definitions of Community from Participatory
Action Research RFA

• Populations defined by geography race
  ethnicity gender sexual orientation
  disability, illness, or other health condition
• Groups that have a common interest or cause ie.,
  health or service agencies and organizations,
  health care or public health practitioners or
  providers, or lay public groups (neighborhood
  associations) with public health concerns
• State, local, and tribal leaders and
  policy-makers

Wallerstein, Parker
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Definition of CBPR

• Collaborative approach to research that
  equitably involves all partners in the research
  process and recognizes the unique strengths that
  each brings. CBPR begins with a research topic
  of importance to the community with the aim of
  combining knowledge and action for social change
  to improve community health and eliminate health
  disparities.
• W.K. Kellogg Community Scholars Program (2001)

Wallerstein, Parker
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Definition of CBPR

• Collaborative approach to research that
  equitably involves all partners in the research
  process and recognizes the unique strengths that
  each brings.
• W.K. Kellogg Community Scholars Program (2001)

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Definition of CBPR

• Collaborative, equitable partnership in the
  research process

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CBPR What it is and isnt

• CBPR is an orientation to research
• changes the role of researcher/agency and
  researched
• CBPR is not a method or set of methods
• Typically thought of as qualitative
• Fewer epidemiologic examples, but promising
• CBPR goal is to influence change in community
  health, norms, systems, programs, policies

Wallerstein, Parker
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CBPR What it is and isnt

• CBPR is an orientation to research
• changes the role of researcher/agency and
  researched
• CBPR is not a method or set of methods
• Typically thought of as qualitative
• Orientation can be applied to a broad range of
  research designs

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Benefits of CBPR

• Increases accurate and culturally sensitive
  interpretation of findings
• Facilitates effective dissemination of findings
  to impact health
• Increases translation of evidence-based research
  into sustainable community change
• Provides resources and benefits to communities
• Joins partners with diverse expertise
• Increases research trust

Wallerstein, Parker
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Benefits of CBPR (NIH RFA)

• Enhances relevance of research questions to the
  communities at highest risk
• Enhances reliability and validity of measurement
  instruments
• Improves response rates
• Enhances recruitment and retention
• Strengthens intervention by incorporating
  cultural beliefs into scientifically valid
  approaches

Wallerstein, Parker
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Rationale for CBPR

• Its the right thing to do

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Part 2Examples of engagement with communities
in support of clinical and translational research
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What is RIOS Net?

• Voluntary collaboration of clinicians serving New
  Mexicos low-income, medically underserved, and
  culturally diverse communities

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Purpose of RIOS Net

• To study and work collectively to improve the
  health and health care of the people of these
  underserved communities

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RIOS Nets Other Goals

• Address health disparities in NM
• Work to retain clinicians in medically
  underserved areas
• Research health care that works in NM
• Provide professional and community education

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Who Are RIOS Net Members?
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Who Are RIOS Net Patients?
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RIOS Net and CBPR

• Two communities, many communities
• Three partners in decision-making
• Three partners in planning
• Three partners in analysis
• Feedback/reporting/education

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RIOS Net and CBPR

• Board of Directors
• Community Advisory Board
• Outreach Specialists
• Professional
• Community

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RIOS Net Priorities

• Diabetes/obesity in young
• Working more effectively with traditional
  providers
• Tobacco use in young
• Depression
• Family violence, including adverse childhood
  events

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RIOS Net Priorities

• Chronic pain
• Hepatitis C
• Problem alcohol and drug use
• Cancer prevention
• Access to care
• Wellness/health promotion

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RIOS Net and CBPR

• Board of Directors
• Community Advisory Board
• Outreach Specialists
• Professional
• Community

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Clinical Outreach
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Why Clinicians as Community?

• Provide healthcare in rural, underserved areas
• Clinicians and Clinics often under-funded
• Lack of access to patient resources
• Geographic Professional isolation
• Highly committed dedicated individuals
• Similar goals
• Similar challenges
• Similar time-constraints

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Clinical Outreach

• Aims
• Develop, maintain sustain relationships with
  clinician members
• Engage clinicians in Practice Based Research
• Report project results
• Elicit clinician member feedback
• Assess relevance
• Report clinician feedback to academia
• Provide educational opportunities (CME)
• Translate Research Into Practice (TRIP)

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Process for Deciding Projects
Management Team
RIOS Net Members Community
Community Advisory Board
Board of Directors
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How we do it

• Get in the door
• Schedule visits
• Report on news, activities, project progress
  reports, results
• Follow up with clinicians, return visits to
  clinics
• Develop relationship with practice staff
• Provide Member Benefits
• Offer CME for Outreach visit
• Provide Members with stuff

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How we do it

• Maintain communication and relationships
• RIOS Net Website
• Annual member meeting
• Newsletter/ listserve
• Study focus groups
• Educational opportunities
• Continued Outreach visits

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Clinician feedback

• I just like being a part of RIOS Net as a
  whole I am fairly isolated here I do
  appreciate touching bases with other providers in
  my situation with those in academia at the
  large medical center of UNM
• I like the idea of clinically-based research,
  but feel somewhat out of touch still about the
  bigger picture. I liked to see how simple it was
  to gather information in a focused way, and would
  welcome further projects.

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What we do

• Recruit clinicians in rural areas
• Reduce professional isolation
• Report clinic-specific project results
• Report clinician feedback to RIOS Net Boards
• Protect clinician confidentiality
• Retain clinicians in underserved areas

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Clinician Retention in NM

• RIOS Net members (80) had been in their clinic
  for 2 or more years compared with non-RIOS Net
  members (56) (p 0.01)
• RIOS Net members (54) had been in their clinic
  for 5 or more years than non-RIOS Net members
  (31)

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Translation of Research into Practice

• Recently the presence of AN in a 9 year oldled
  to the early diagnosis of DM.
• It made me much more aware of AN now it is a
  part of my exam in all non-diabetics.
• The initial training was helpful, but it was
  probably the repetition required to complete the
  survey which made the project so useful to me.
• This project was useful to me. Thank you for
  taking the time to conduct the study

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What we offerMember Benefits

• Access to
• UNM library resources
• Web-based public health courses
• CME
• Funding for
• Travel to meetings
• Pilot projects
• Appointment as clinical faculty (if desired)

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Challenges

• It is not always easy
• Requires resources (money, time, vehicle)
• You are not always remembered
• Activities are not always well-received
• Benefits not always apparent

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Conclusion

• RIOS Net is a way for a provider to still feel
  challenged think about questions solutions
  for those questions.
• Because RIOS asks providers about what are the
  pressing questions for them, it legitimizes their
  work in direct care and their role in
  contributing to communities.
• A problem in rural areas is that providers dont
  have connection to other providers.

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Clinical Outreach Summary

• Building Relationships
• Staying connected
• Recognizing Challenges
• Improve clinical care
• Retain clinicians
• Provide Better Health in the communities
• Rewarding, fun and achievable!

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Community Outreach
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Community Outreach

• Primary Aim
• To gather information about local health
  priorities and topics for PBRN research
• To review the community and cultural
  appropriateness of research plans with community
  members
• To provide both updates and project results
• To provide health information on the priority
  topic areas.

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Community Outreach

• A secondary aim
• is to build a partnership and enhance
  relationships with community-based partners

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Community Outreach

• Community Outreach efforts have been directed
  toward
• Organizations
• Coalitions
• Consumer groups that have interest in health
  related issues
• Broadly representative groups in Native American
  and Hispanic communities

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Native American Community Outreach

• There are 19 pueblos, the Jicarillaand Mescalero
  Apache reservations and the Navajo Nation
• Indian Health Services
• Boards
• Navajo
• Chapter House Gatherings
• Native American Health Councils
• Native American Health Coalitions
• Other special interest groups
• Conferences

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Community Outreach

• Community Health Clinic Boards
• Community Health Councils in each County
• Department of Health by county
• Health Coalitions
• Special Interest Groups
• Diabetes Advisory Council
• Border Health Council

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Engaging Communities

• Develop Relationships
• Meet with groups
• Identify Key Contacts
• Connect with Leaders
• Request time on agendas
• Assess Community Needs
• What are their healthcare priorities?
• Provide requested Information
• Provide health related education
• Collaborate on common interests
• Elicit community input

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Engaging Communities

• Provide continuous connection
• Update community on projects
• Project results useful to their community
• Stay in touch
• Follow through with special requests

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Engaging Communities

• Potluck Health Council Meeting
• Green chili stew a big hit
• Human connection (communities expect
  professionalism but need to see humanism)
• Respect sit or stand
• Chapter House
• Mutton Stew Indian Bread
• Waiting hours for time on agenda/or not

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Challenges of Community Outreach

• Takes time
• Traveling
• Waiting to get agendas
• Waiting in meetings, hallways
• Takes money
• Travel, lodging etc.
• Staff

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Challenges of Community Outreach

• There is a lot of effort in planning
• Making contact, getting on agendas
• Travel plan- availability hotels, restaurants
• Unfamiliarity with community
• Hard to identify if it is group you should be
  meeting with

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Overcoming Challenges

• Know the community
• Find out as much about them as you can
• Contact community leaders
• Involve community in the planning process, will
  make things easier later

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Overcoming Challenges

• Prepare
• Travel
• Possible disappointments/frustrations
• Allow yourself to be flexible
• (Outdoor meeting in Portales at 102 degrees)
• Collaborate with others who have set the
  foundation and can assist with the process

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Benefits of Engaging Communities

• Build partnership between researchers and
  communities
• Increase trust-
• Helps break down barriers built by history of
  research
• drive by research
• Enhances relevance of research questions

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Benefits of Engaging Communities

• Enhances recruitment participation
• Assures protection of a community by the
  community
• Increases culturally sensitive interpretation of
  findings
• Committed to bring information back /report
  results

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RIOS Net Community Advisory Board

• Representatives from all regions of NM
• 12 member CAB
• 6 Navajo Indian
• 1 Pueblo Indian
• 4 Hispanic
• 1 White
• Meet quarterly

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Community Advisory Board

• Responsibilities
• The Community Advisory Board advises on pending
  proposals for Network projects and major policy
  decisions of the Network.
• The CAB gives feedback to the Network Board on
  these topics through its three representatives to
  the Network Board

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• Community outreach plays a key role in bridging
  the divide between researchers and
  underrepresented communities in New Mexico.

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Community Outreach Building Bridges

• Building the bridge may take time.But once you
  build the bridge, takes a pretty bad storm to
  knock it down.
• Quote from Community Health Council Member
• on why I was visiting his community

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• Part 3
• Example of application of CBPR to clinical and
  translational research

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Applying CBPR to Practice-Based Research

• A Study (but mostly a story) of Communication
  about Traditional Medicine in Primary Care
  Settings

NIH/NCCAM 5R21 AT002323-01/2
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A few things

• Feasibility CBPR exists along a continuum
• Importance of partnerships throughout process
• development, implementation and dissemination
• Evolving, iterative nature of work

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A few things

• CBPR as orientation
• implications for research
• Changes and challenges the traditional
  researcher-subject relationship
• WARNING CBPR may not be advisable forand could
  be potentially hazardous tostrict linear
  thinkers!

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A Project Partnership

• Figuring out
• 1. What to do
• 2. How to do it
• 3. What it means
• 4. What to do next
• 5. Sharing

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1. What to do

• In the beginning...
• Statewide clinician and community engagement
  process to identify RIOS Net priorities
• Lots of problems, lots of concerns distill down
  over 50 options
• Traditional Medicine/Complementary and
  Alternative Medicine (TM/CAM) Priority
• Clinicians sense that they werent connecting
  with patients about TM/CAM need to do better
• Community varied perspectives

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1. What to do

• Mission How can we enhance TM/CAM communication
  between patients and providers?
• Challenge Translation of raw priority area into
  viable project that meets everyones needs
• Developed interest group
• Exploratory questions (whats happening, what do
  patients and providers want?)

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2. How to do it

• Refine questions and process through
  clinician/community engagement
• Cliniciansuse existing RIOS Net structures (BOD)
  for feedback
• Focus on clinical relevance potential to reduce
  adverse drug/herb interactions
• Communitymultiple contacts
• RIOS Net Community Advisory Board
• Outreach visits around NM
• Navajo Nation research review process

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2. How to do it

• Community Feedback TM/CAM as sensitive issue
• Helped set boundaries of questions
• Study should not be about
• Whether TM/CAM modalities work
• Context of use

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2. How to do it

• Research Questions
• Predicting patterns of TM/CAM use TM/CAM
  communication

Pilot Process
Partner Participation in
Patient Interviews
Planning
Data Collection
Provider Interviews
Review
Clinician Focus Group
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2. How to do it

• (Not on auto) Pilot Process
• First stop review questions
• with patients at 2 clinics in
• Albuquerque
• Back to the drawing board either no TM/CAM users
  or we werent asking in appropriate ways
• Assumed it was us (we were right)

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2. How to do it

• (Not on auto) Pilot Process
• Clinic staff are key resources bridge clinic and
  communityspeak with them
• Confirmed high use of TM/CAM valuable insights
  into patient concerns (often dont share TM/CAM
  use with providers)
• Revised our approach
• Demonstrate acceptance
• Realized we needed to talk to clinic staff
• first at each practice

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2. How to do it
Pilot Process
Clinic Staff Focus Groups
Partner Participation in
Patient Interviews
Planning
Data Collection
Provider Interviews
Review
Clinician Focus Group
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3. What it means (and what to do and how to do it)

• Clinic Staff Focus Group Vignette
• Purposelocal TM/CAM terminology clinic
  logistics
• First stopsmall, northern NM Hispanic village
• 6 participants
• 1 male Dreaded
• dominant participant

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3. What it means (and what to do and how to do it)

• Shifting the focus of the focus group
• The practice of the herbs was not an isolated
  practice it was a very strong integral part of
  a system. Scientists have a problem understanding
  this, researchers have a problem understanding
  this, and I have to say it, and Im going to say
  it this way if you take the part away from the
  whole, youre taking a part away from the whole
  for another motive, and the motive is usually to
  exploit it. If you dont look at it as an
  integral part of a lifestyle of the people,
  youre gonna miss it and were gonna end up with
  a beautiful glowing report thats gonna be false.

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3. What it means (and what to do and how to do it)
Yerba Mansa (Anemopsis californica)

• So its the herb that you take to calm you,
  because its for the heart. You have to be kind
  and gentle because its for the heart. Even the
  name tells you that.

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3. What it means (and what to do and how to do it)

• So remember the name of that herb, OK? It means
  to be tame and tameness comes in the form of
  gentleness and kindness. Be gentle and kind, but
  most of all, be sincere about it.

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3. What it means (and what to do and how to do it)

• Aha! Moment
• Yerba Mansa as metaphor
• evaluate my intentions
• Shift in researcher-subject relationship
• Be aware of other stories

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Participatory Results Practical

• Focus group aims were accomplished
• TM/CAM terminology, clinic logistics
• 100 clinic participation rate
• bridge to successful access to patients
• no refusals
• Richness of discussion

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3. What it means Developing a Model of TM/CAM
Communication

• PATIENT
• AS How do you think your doctor would respond if
  you told them about the other things you were
  doing?
• PT I think sometimes they dont believe they
  work. But a lot of people are going for that,
  and I think they do work.
• AS Is that why you dont discuss it, or is there
  another reason?
• PT No, they dont ask me, so I dont tell them.
• PROVIDER
• AS So, where does discussing TM/CAM fit in your
  hierarchy of things?
• PROV I think if I heard more of it coming from
  my patients, I would feel more stimulated to go
  out there and get myself informed. But if
  theyre not bringing it up, then Im not.  

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3. What it means Developing a Model of TM/CAM
Communication

• PATIENTS
• Need to perceive
• Openness, Respect and Interest
• Use driven by
• Cultural identity, Family history and Proximity
  to home

• PROVIDERS
• Need to demonstrate
• Openness, respect and interest
• Need to initiate discussion
• Need not be content experts

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4. What to do next

• Completed interviews/focus groups with clinic
  staff, patients and providers
• Developed a model of TM/CAM communication
• See if we got it right
• Review findings with stakeholders

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2. How to do it
Pilot Process
Clinic Staff Focus Groups
Partner Participation in
Patient Interviews
Planning
Data Collection
Provider Interviews
Review
Clinician Focus Group
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2. How to do it
Clinic Staff Focus Groups (8)
Pilot Process
Patient Interviews (93)
Partner Participation in
Provider Interviews (14)
Planning
Data Collection
Clinician Focus Group (1)
Review
Community Advisory Board Focus Group (1)
Patient Video ReviewModel Confirmation (21)
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4. What to do next and 5. Sharing

• Use RIOS Net participatory infrastructure to
  disseminate results and gather feedback
  (bidirectional)
• CliniciansBOD, website, clinical outreach visits
• CommunityCAB, community outreach visits, Navajo
  Nation process
• Wider audienceconferences, publications

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Participatory Results Long Term

• PBRN participatory organizational structure
• Projects not end point process of maintaining
  good relationships with clinics and communities
• access to other data
• Research process
• Create partners rather than subjects
• Consistent with cultural/ethical norms

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How you can do it

• Its all about the roots
• Create a collaborative team who do you need to
  partner with?
• Whats the problem and the goal?
• What skills, perspectives and interests do your
  partners need?

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Challenges and Successes

• Challenges
• Investigators not from communities (importance of
  partnerships)
• Difficult to involve community members/partners
  in all aspects of project
• Takes more time, costs more, requires having or
  building good working relationships
• Evolving nature of process

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Challenges and Successes

• Successes
• Community involvement early prevents problems
  later
• Final model is more relevant with community
  approval and input
• The right thing to do, especially given the
  history of abuses in this area
• Evolving nature of process

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Questions?
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• Part 4
• Consider strategies for applying CBPR principles

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Summary

• Example of ongoing clinical and translational
  research network operated on CBPR principles,
  multiple studies
• Example of ongoing partnership with two
  communities/many communities
• Example of CBPR principles applied to specific
  clinical and translational research study

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Yeah, but.practical?

• Costly
• Time consuming
• Whos out there
• Area of research vs. community interests
• NIH scientific/review committees vs flexibility
• Not qualitative researcher, not UN negotiator

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Definition of CBPR

• Collaborative, equitable partnership in the
  research process

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• CBPR is not a method or set of methods
• Wallerstein

• Orientation can be applied to a broad range of
  research designs
• Descriptive
• Epidemiologic
• Trials

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How can you do it?- the core principles

• Consider and search out partners appropriate to
  your interest/work
• Act to create and build true partnership
• Recognize and value contributions of all partners
• Return value to all partners

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Making CBPR practical

• Identify internal partners to assist with bridge
  to external partners
• Begin partnership process early
• Work to identify what value you can provide the
  partner
• Be willing to compromise

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Local Resources

• Center for Participatory Research, Institute for
  Public Health/DFCM
• Nina Wallerstein
• nwallerstein_at_salud.unm.edu
• Center for Native American Health
• Tassy Parker taparker_at_salud.unm.edu
• RIOSNET Provider Research Networks
• Rob Williams rlwilliams_at_salud.unm.edu
• Future CTSC Community Engagement, Partnership for
  Health Research Unit

Wallerstein, Parker
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Making CBPR practical

• Identify internal partners to assist with bridge
  to external partners
• Begin partnership process early
• Work to identify what value you can provide the
  partners
• Clarify how your interest/work can be important
  to partners/communities

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Making CBPR practical

• Plan the time and costs
• Be willing to compromise
• Applications scientific values of partnering

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Objectives

• Review core principles of CBPR
• Examples of CBPR principles in action
• Consider the application of CBPR to clinical and
  translational research

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Suggestions, comments, questions?

• hsc.unm.edu/rios
• rlwilliams_at_salud.unm.edu
• gcardinali_at_salud.unm.edu
• gusandoval_at_salud.unm.edu
• asussman_at_salud.unm.edu