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Virtual engagement and boot camp translation improve clinical trial awareness
- 1. CONSIDERATIONS FOR EFFECTIVE VIRTUAL ENGAGEMENT AND USING BOOT CAMP TRANSLATION FOR IMPROVING CLINICAL TRIAL AWARENESSSuzanne Millward, MPH, CHES University of Colorado Data Science to Patient Value Initiative © 2018 University of Colorado
- 2. USING VIRTUAL PLATFORMS (VPS) TO ENGAGE STAKEHOLDERS IN HEALTHCARE RESEARCH Topics discussed at the symposium: current projects issues in the collection, validation, and analysis of data obtained virtually regulatory and ethical issues weaving traditional engagement considerations into the virtual arena.
- 3. PRESENTATIONS Speaker: Institution: Presentation Title: Kim Kimminau, PhD University of Kansas Using Liberating Structures to Unleash Stakeholder Engagement Potential Kathleen McTigue, MD, MPH, MS University of Pittsburgh MyPaTH Story Booth Project: A digital engagement tool from the PaTH Clinical Data Research Network (PCORnet) Katja Reuter, PhD University of Southern California Trial Promoter: A Web-based Tool to Test Stakeholder Engagement in Research on Social Media Matt Baumer, PhD Facebook Building Engaged Communities with Facebook Matthew DeCamp, PhD, MD Johns Hopkins University The Ethics of Virtual Engagement Consuelo Wilkins, MD, MSCI Vanderbilt University Medical Center Stakeholder Engagement to Enable Consensus Building and Decision-Making David Grande, MD, MPA University of Pennsylvania Research to policy - can social media bridge the divide?
- 4. MAIN POINTS – SPECIFIC TO SOCIAL MEDIA 1. Opportunities and efficiencies (Baumer, Grande, Reuter) 2. Transparency is key (Reuter) 3. Need for standards (Reuter)
- 5. MAIN POINTS – GENERAL CONSIDERATIONS 4. Researcher discomfort with stakeholder engagement (McTigue) 5. Can virtual platforms generate an authentic relationship? (Audience) 6. Ask your stakeholders how they want to be engaged (Wilkins) 7. Can VPs be used to break down pre-existing
- 6. MAIN POINTS – GENERAL CONSIDERATIONS 8. Virtual storytelling (Kimminau & McTigue) 9. Process and outcome measures (DeCamp) 10.Ethical considerations in the virtual arena (DeCamp)
- 7. BOOT CAMP TRANSLATION (BCT) Developed by the High Plains Research Network (HPRN) Community Advisory Council in rural eastern Colorado Translates medical information and guidelines into understandable messages and materials for community members Draws upon the expertise of community members, researchers and medical professionals Source: Boot Camp Translation – Engaging Communities to Improve Health: A Guidebook (Zittleman et al.)
- 8. BCT – WHY WE LIKE THIS METHOD Ongoing, bi-directional engagement Collaborative group dynamics Community empowerment
- 9. BCT – THE PROCESS 6-12 months (at least) of in person and phone meetings Begins with one full-day session Medical expert provides an in-depth presentation on the health topic at hand Brainstorming The rest of the process 30-minute focused phone meetings every few weeks Task-oriented and specific A few 2-4 hour in-person meetings over the engagement period Broadly focused Product feedback Source: Boot Camp Translation – Engaging Communities to Improve Health: A Guidebook (Zittleman et al.)
- 10. EXAMPLE PRODUCTS FROM BCT Sources: • http://www.bootcamptranslation.org/ • http://www.jabfm.org/content/26/3/254.full#ref- 23
- 11. WHEN SHOULD I CONSIDER BCT FOR MY PROJECT? Useful For… Translating complex info into common language and constructs Building relationships Engaging communities Creating a collaborative group dynamic Determining how best to disseminate messages to your target community NOT Useful For… Quick, one-time information gathering Inflexible projects Projects with a short timeframe Topics that do not have evidence- based medical guidelines or compelling recommendations Source: Boot Camp Translation – Engaging Communities to Improve Health: A Guidebook (Zittleman et al.)
- 12. BCT – SPECIAL CONSIDERATIONS ~12 community members Recruitment Cost - $16K-30K or more FTE Need 2 skilled facilitators plus note-taker(s) Need artist (graphic designer, videographer, etc.) who can bring final product to life Evenings plus weekends BCT participants are not research subjects Source: Boot Camp Translation – Engaging Communities to Improve Health: A Guidebook (Zittleman et al.)
- 13. CAN BCT BE USED TO IMPROVE CLINICAL TRIAL AWARENESS?
- 14. SOME BCT RESOURCES Attend a BCT training! Next training: August 15-17, 2018 in Denver, CO Register here or contact Linda Zittleman with questions Last day to register is July 15 BCT webinar Testing to Prevent Colon Cancer - Video from HPRN Academic papers: Boot Camp Translation: A Method for Building a Community of Solution (Norman et al.) Stakeholder Engagement in diabetes self-management: patient preference for peer support and other insights (Kwan et al.) Translating Biobank Science into Patient-Centered Language (Coors et al.)
- 15. THANK YOU! Suzanne Millward, MPH, CHES Email: Suzanne.Millward@ucdenver.edu Phone: (303) 724-5511 LinkedIn: https://www.linkedin.com/in/suzanne-millward-mph-ches- 31691161/
- 16. ACKNOWLEDGEMENTS Thank you to the NIH and NCI for inviting me to give this talk. I would also like to thank D2V and all my colleagues on the Stakeholder Engagement Core: Matthew Wynia Bethany Kwan Marilyn Coors Julie Ressalam Meleah Himber Erika Blacksher
Editor's Notes
- Current projects that have used VPs to engage stakeholders Regulatory and ethical issues in the use of data obtained virtually Virtual platform: includes social media, phone conversations, videoconferencing, patient portals.
- Kimminau and McTigue: current projects Reuter and Baumer: data collection, validation, analysis DeCamp: ethics Wilkins and Grande: Weaving it all together
- 1) Cost effective, spans wide geographies, users don’t have to leave house, identify and reach additional audiences. Interest in using social media for research purposes seems to be increasing, but despite these efficiencies, comfort levels are still fairly low. 2) It is important to be transparent when using social media for research, but in order to be transparent we need to develop standards. 3) Need better standards in this arena in order to address Privacy constraints Regulatory infrastructure of conducting research virtually Standards of reporting about about data obtained virtually
- 4) Larger issue: Researchers often don’t know how to identify, interact with, and engage stakeholders. VPs may provide great opportunities for researchers uncomfortable with in-person engagement or with limited resources, however If researchers don’t have a solid foundation with more long-standing forms of engagement, using VPs may not be the best solution. Could be difficult to achieve true engagement from VPs Need to make researchers comfortable with engagement before trying to replace it with VPs 5) Can VPs replace in-person engagement? This isn’t just something our audience wondered, your social media platforms are also likely thinking about this 6) Have your stakeholders help with study design, and ask them how engagement should look 7) Balancing power dynamics is crucial, and we need to remain aware of power dynamics when engaging virtually. Or might VPs reinforce disparities? These are questions we should be asking. VP also can stand for vulnerable population
- 8) Virtual storytelling may have unique strengths. Storytelling can be more persuasive than data, and some stories may be better received virtually (for instance, some research is beginning to indicate folks prefer to speak to computerized therapists over real ones). May want to consider how to incorporate storytelling into virtual communication 9) Engagement sciences in general need more rigorous process and outcomes measures to evaluate the effectiveness of engagement activities. In the absence of non-verbal cues, the ability to measure engagement may become even more important 10) Virtual engagement will likely require additional ethical considerations on top of the ethical considerations foundational to engagement. Ex: Who should be included/excluded in engagement? VPs: Can this VP be inclusive of vulnerable or marginalized groups, for example those with limited access to technology?
- BCT is a robust, rigorously tested process of engagement. It is a translational exercise which turns a cohort of community members into content experts on a health topic. Community partners then decide what messages they want to reach their community and how they want these messages to be disseminated (includes the creation of communications materials) BCT – Engagement Core are big fans of this method. It comes up pretty frequently in our meetings. 1) Developed by researchers at Univ of Colorado and community partners *Community members engaged as partners
- Empowers communities – educates them on a topic and then provides them with the resources they need to share their message Balanced power dynamics - To show that it’s okay to ask a question, facilitators will raise hand and ask for clarification
- BCT process is rigorous Full day meeting 6-7 hours (includes lunch and breaks)
- A random-digit dial survey found that over 65% (68%) of people surveyed reported seeing at least one of the intervention materials Testing to prevent colon cancer was increased in this population The more individuals were exposed to dissemination materials, the more their intention to get screened increased “Multivariate analyses determined an increasing linear trend between the number of intervention items seen and the intent to "talk to a doctor about colon cancer testing" and to "get tested“”
- Determining how best to disseminate messages that maintain scientific integrity, are locally relevant, and are culturally appropriate
- The BCT process is not research and participants are not research subjects. BCT participants serve as partners in developing messages and materials. Therefore the BCT process may not require human subjects review from an IRB, although implementation and evaluation activities, once a final product has been developed, will likely require IRB review and approval.
- YES, absolutely Examples: