collaborating with the oef/oif/ond community for research success
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Collaborating with the OEF/OIF/OND Community for Research Success. Drew A. Helmer, MD, MS Neurorehabilitation: Neurons to Networks Rehabilitation Research & Development Center of Excellence Michael E. DeBakey VA Medical Center Baylor College of Medicine August 10, 2011. Objectives. - PowerPoint PPT PresentationTRANSCRIPT
Drew A. Helmer, MD, MSNeurorehabilitation: Neurons to
Networks Rehabilitation Research & Development Center of Excellence
Michael E. DeBakey VA Medical Center
Baylor College of MedicineAugust 10, 2011
Collaborating with the OEF/OIF/OND Community
for Research Success
ObjectivesAt the end of this session, participants will
be able to:Articulate challenges in recruiting
OEF/OIF/OND Veterans for research activities.Discuss the pros and cons of engaging the
OEF/OIF/OND Veteran community as an active partner in research.
Apply examples from the case presented to their personal research endeavors.
ResearchThe systematic collection of information for
the purpose of discovering new, universal truthsGeneralize findings from the sample to the
populationExpensiveRequires extensive education/trainingInvasive/intrusiveTime consuming
Ethical Principles of ResearchEthics guided by three Belmont Principles
Autonomy/Respect for PersonsBeneficence/Non-maleficenceJustice/Equity
Community A group of people with diverse characteristics who are linked
by social ties, share common perspectives, and engage in joint action in geographical locations or settings.
Common elements:LocusSharingJoint actionSocial tiesDiversity
ExamplesFamilyNeighborhood/cityCivic or social organizationsBusiness
Research Case Examples- An intentionally provocative comparisonAIDS Persian Gulf War ‘Syndrome’Identified ca. 1980Identified etiologyEffective, evidence-
based treatments widely available
Improved preventionContinues to be
prominent research priority
Scientific benefits beyond the original focus
Identified ca. 1992Etiology(ies) unclearNo specific evidence-
based treatmentPersistent post-
concussive symptoms in OEF/OIF Veterans
Low research priorityImpact of results?
OEF/OIF/OND Veterans Demographics-
70% <40 years old 88% men
Geography- Rural vs. urban Regional distribution Mobility
Education/Training- not researchers Life Experience-
High school, some college Military
Personal Priorities- Education/training Employment Family
Identity- many don’t self-identify as a “Veteran”
Post-Deployment Health ResearchExamplesFundingFunding SourcesFoci
Post-traumatic stress disorderTraumatic brain injuryPainCare DeliveryProstheticsReintegration/Social Factors
Challenges of PDH ResearchRecruitmentRetentionConcerns about secondary gain/symptom
exaggerationComplex comorbidities/condition overlapVA stigmaMental health stigmaRegulatory/Policy restrictions
Channels of communicationParticipant reimbursement
Engaging clinicians in the effort
A Culture of Curiosity-VHA Research StakeholdersEngage patients and families at enrollment
Consent to care includes language about research uses of clinical data
Engage employeesHighlight Veteran employee participationEducate about ongoing projects
Provide talking pointsProvide buttons/information cards
Engage cliniciansVHA physician-researchers more satisfied than
non-researchersInclude in study design, recruitment, assessment,
analysis and dissemination
Community Engaged ResearchA frameworkA continuumCommunity Based Participatory Research
A 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 and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities. (WK Kellogg Foundation)
Benefits of Community Engaged ResearchPromote understanding between researchers
and target groups (e.g., promote trust).Enhance participation in research activities.Provide a more detailed understanding of the
environmental and social aspects of a problem that may impact implementation.
Promote adoption of effective solutions.Provide continuity for sustained impact.Educate targeted group members.Prepare target community and members for
findings of study.
Ethical Considerations & Processes for Managing IssuesConsiderations
Risks to individualRisks to community (group)Risks to individual vis a vis group membership
SolutionsTrain Investigator and Research teamInstitutional Review BoardData Safety and Monitoring PlanConflict of Interest ReviewResearch Ethics Consultation programResearch Subject Advocacy programCommunity Advisory Board
Neurorehabilitation:Neurons to Networks RR&D Research COERecruit for the main protocol
GeneticsCommunity Reintegration of Servicemembers
instrumentTemporal perception testBehavioral Assessment Core IBehavioral Assessment Core IIfMRI- working memory processingfMRI- social interaction
Participant Flow
BAC1
BAC2
fMRI
WhoInclusion Criteria
OEF/OIF veteransmTBI or controlsInjured after 2003
Exclusion CriteriaPre or Post deployment hospitalization for
head injuryBaseline cerebral palsy, mental disability,
epilepsy, bipolar disorder, schizophreniaAny history of brain surgery
Targets for RecruitmentCore pilots of the protocol had a wide range
of recruitment targets, without specific time frames
Current expectation60 cases & 40 controls per yearRecruitment weekly goals
Referrals- 10Screened- 8Eligible- 3
These targets will result in 144 subjects a year
Resources for RecruitmentDirector of Recruitment and Retention Core
Clinical Champion for Post-deployment health at facility and VISN
Full time research assistantAdministrative assistance from
administrative officer and other research assistants
Center investigators
Overall Numbers for TBI CoEReferrals= 420Screened= 302Initial visits= 118
2011 summary
0
5
10
15
20
25
30
35
40
ScreenedInitial visits
Participant Volume
0
10
20
30
40
50
60
70
0
10
20
30
40
50
60
70
80
90
1/20/10-1/1/11 1/1/11-6/26/11 6/27/11-Present
Volume
Reasons for Exclusion/Drop OffFrom referral to screening
Not interestedNo contact infoNot qualified; not OIF/OEF veteran
From screening to initial visit (BAC1)No show (3 chances)
From initial visit (BAC1) to neuropsychologic testing (BAC2)Failed effort testingPositive alcohol abuse screenPositive substance abuse screen
Referrals by source to datePost deployment clinic 36 – 9%Traumatic Brain Injury clinic 167 – 40%Mental Health 42 – 9%Other- ** 178 – 42%
**(PrimeCare, Vet Centers, CBOC’s, community events)**
Putting things in perspectiveIn the greater Houston area:19,000 deployed OIF/OEF veterans10,000 have used VHA5,000 used VHA in past year2132 out of 9082 (23%) screened positive
for TBI1471 out of 2132 (69%) completed TBI 2nd
level clinical evaluation989 of 1471 (68%) were determined to
have experienced a concussion/mTBI
Recruitment Sources
Recruitment StrategiesDirectIndirectCommunity Engaged ResearchMarketing/Public RelationsSocial Media
Direct RecruitmentFace to face- in facilityEllington Field Joint Reserve BaseOEF/OIF program outreach
Welcome home eventsYellow Ribbons
Veteran Service Organization Meetings/ActivitiesLonestar Veterans AssociationIraq and Afghanistan Veterans AssociationStudent Veteran Associations
Indirect RecruitmentVHA providers
PrimeCareTBI clinicPost Deployment ClinicMental Health (Trauma Recovery Program)Community Based Outpatient Clinics
School Veteran CounselorsVeteran Service OrganizationsVet CentersOther community-based healthcare providers
Community EngagementCommunity Council for TBI COESpeakers bureauAttendance/sponsorship at community
eventsEngage OIF/OEF/OND Veteran volunteersClinical placements for OEF/OIF/OND
Veterans
Social Media/Other TechnologyFacebook
VHA nationalVHA localNon-VHAInvited group facebook page
TwitterText messaging
Marketing/Public RelationsPress releasesMedia relationsBrochuresAdvertisements
Criteria for Recruitment ActivitiesAudience sizeAudience type: military, researchers,
studentsType of activity: direct, indirect, community
engagement, PRCostOther potential benefits to N:N2N COE
EducationName recognitionGoodwill
Current/Future direction for recruitmentMaintain/Build/Enhance current clinical referral
baseSchools
Working with counselors for new enrollment yearStrengthen relationships with VSO’sAdvertisementsSocial media
Plan to use local Facebook page starting October 1, 2011
Mail recruitment letters from providers“Refer a friend” rewards program
RetentionOngoing contact with VSO’sMailed thank you cards at end of calendar
year 2010Newsletter planned for end of 2011Recontact participants for new research
opportunities
Observed ChallengesRecruiting controlsScheduling appointments (no-shows)Comorbidities (e.g., PTSD, mTBI, alcohol abuse)Failure rate on effort testingPaucity of visible, effective OEF/OIF VSO’sVolunteer fatigue in VSO community leadersDelay in development of ‘veteran’ identityStigma of combat experience in the
school/workplaceHandling disappointed ineligible Veterans
Next StepsEnhance retention through a longitudinal study
Need more resourcesPromote more ‘give backs’ to participants and
communityNewsletterPresentations of results to lay audiencesSummary of some findings from assessments
Enlarge pool of OEF/OIF/OND Veteran volunteers engaged in COE activities
Formalize/enhance Veteran Community Council involvement
ConclusionsRecruiting OEF/OIF/OND Veterans for research is
challenging.Community engaged research activities may help.
Other benefits to communityCost/benefit assessment is critical
Veterans must participate in research if they want answers to their concerns about deployment-related health issues.
Researchers must consider the priorities of the Veteran community regarding deployment-related health issues, demonstrate appreciation for their participation, and educate the community to succeed.
Contact InformationDrew A. Helmer, MD, MSMichael E. DeBakey VA Medical CenterHouston, TX [email protected] x 7010 or 713-794-8157