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Data-Sharing Issues for Community-Based
Research Projects Involving Academic and
Community Partners
Response, Recovery, an...
Context of Community-Based Participatory
Research (CBPR)
CBPR requires that:
o University and community partners determine...
History of Collaboration between OSU and
CTUIR
o EPA-STAR-J1-R831046 (2003-2007)
“Estimating Environmental Exposures for
T...
Understanding the Culture of the Community
Building Cultural Capacity at OSU about Tribal research issues

o SRP Engagemen...
Matching Community Goals with Academic Research
Goals
o Challenge was to match up needs and goals of CTUIR with that of ot...
Material and Data Sharing Agreement

7

27
Material and Data Sharing Agreement
o Core developed unique agreement signed by all three parties—CTUIR, OSU, PNNL and is
...
Material and Data Sharing Agreement

Harding, A.; et al. 2012. Conducting research with tribal communities:
Svereignty, et...
Material and Data Sharing Agreement
Material and Data Sharing Agreements have the
following components:

1. General projec...
Material and Data Sharing Agreement

4. Risks and benefits of research to the tribal
community, for both the individual an...
Ethics and Informed Consent

IRB

IPR

Extra effort at
informed consent and
identifying potential
risks

Data ownership;
P...
Conclusions—Key Points

o Communication, transparency, bi-directional exchange of science and
culture, authentic and organ...
Acknowledgments
LSU Superfund Research Center personnel
Margaret Reams, Community Engagement Core Leader
Maude Walsh, Rese...
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Data-Sharing Issues for Community-Based Research Projects Involving Academic and Community Partners

Anna K. Harding, PhD
College of Public Health and Human Sciences
Oregon State University

More information on symposium: http://superfund.oregonstate.edu/LSUSymposium1.13#91

More information on research: http://superfund.oregonstate.edu/outreach

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Data-Sharing Issues for Community-Based Research Projects Involving Academic and Community Partners

  1. 1. Data-Sharing Issues for Community-Based Research Projects Involving Academic and Community Partners Response, Recovery, and Resilience to Oil Spills and Environmental Disasters: Engaging Experts and Communities January 29, 2013 Anna K. Harding, PhD College of Public Health and Human Sciences Oregon State University Confederated Tribes of the Umatilla Indian Reservation 1
  2. 2. Context of Community-Based Participatory Research (CBPR) CBPR requires that: o University and community partners determine together the research aims and design such that it benefits the community o Community and university partners have developed a trusting equitable, relationship and shared leadership plan o University researchers need to understand the culture of the community o Decisions have been made about ownership of data; conditions for data analyses, including scope of analysis , privacy issues, intellectual property rights o Potential conflicts around data interpretation and communication of results, including publication are handled upfront 2
  3. 3. History of Collaboration between OSU and CTUIR o EPA-STAR-J1-R831046 (2003-2007) “Estimating Environmental Exposures for Tribes Practicing Traditional Subsistence Lifestyles” https://www.box.com/shared/70r3579u5 gh7ysdugfv7 o Signed MOU in place o Several pilot projects o NIEHS-P42ES016465 (2009-2013) “Tribal-University Collaboration to Address Tribal Exposures to PAHs and Improve Community Health” 3 3
  4. 4. Understanding the Culture of the Community Building Cultural Capacity at OSU about Tribal research issues o SRP Engagement Core (with help from NIEHS-funded Environmental Health Sciences Center) sponsored symposium at OSU on issues/perspectives related to research in Tribal communities o Included Tribal legal issues, research ethics, concepts in indigenous and western science, integration of socio-cultural health indicators into Tribal risk research. o Featured speakers from CTUIR and Swinomish Tribal Community and tribal legal scholar o Bi-directional capacity building o Presentation and speaker details: http://oregonstate.edu/superfund/outreachevents 4
  5. 5. Matching Community Goals with Academic Research Goals o Challenge was to match up needs and goals of CTUIR with that of other projects in SRP o CTUIR has research and data needs of its own and capacity of its own—likely not the traditional types of “community outreach” materials Community Engagement Models Information Transmission Model Dual-Capacity Model University Science University & Tribal Scientists Community Outreach -Tribal Values Translation Engagement Tribal & Academic constituents 6
  6. 6. Material and Data Sharing Agreement 7 27
  7. 7. Material and Data Sharing Agreement o Core developed unique agreement signed by all three parties—CTUIR, OSU, PNNL and is used by all in SRP who are working with CTUIR data. Been adapted for other Tribal projects and is adaptable to any CBPR. o Material and Data supplied by CTUIR to OSU or to PNNL, or collected by OSU on behalf of CTUIR, is and remains the property of CTUIR and shall not be shared with third parties without the written permission of CTUIR. Participant data shall not be sold or used, internally or externally, for any purpose not directly related to the scope of work defined in this agreement without the written permission of CTUIR. o All publications and presentations developed using materials or data collected under this Agreement must be presented to Director of the Department of Science and Engineering, CTUIR for review and approval prior to dissemination. 8 28
  8. 8. Material and Data Sharing Agreement Harding, A.; et al. 2012. Conducting research with tribal communities: Svereignty, ethics, and data-sharing issues. EHP 120(1): 6-10. 8 28
  9. 9. Material and Data Sharing Agreement Material and Data Sharing Agreements have the following components: 1. General project scope and collaborators. 2. Types of material and data collected: States the types of material and data to be collected and the general collection method. 3. Constraints on material and data use. Stipulates that data cannot be shared with third parties without written permission from owner of data. 4. Data access and security 9
  10. 10. Material and Data Sharing Agreement 4. Risks and benefits of research to the tribal community, for both the individual and the tribal community 5. Agreement on communication of research and mutual review processes 6. Confidentiality agreement regarding use of community data and disclosure of information 7. Termination of agreement and return of data to owners 10
  11. 11. Ethics and Informed Consent IRB IPR Extra effort at informed consent and identifying potential risks Data ownership; Publication rules Governmental & Regulatory context Sovereignty; Cross-cultural history, psychology, world view 11 CTUIR 2010
  12. 12. Conclusions—Key Points o Communication, transparency, bi-directional exchange of science and culture, authentic and organic partnership development, commitment to the relationship—necessary for community-university partnerships to succeed. o University researchers engaged in tribal projects should become familiar with issues of sovereignty (with Tribal nations), ethics and informed consent, and intellectual property rights. o Material and Data Sharing agreements explicitly state agreed-on processes for transparency that benefit community and university partners. Highly recommended for any research partnership between communities and university researchers. 13
  13. 13. Acknowledgments LSU Superfund Research Center personnel Margaret Reams, Community Engagement Core Leader Maude Walsh, Research Translation Core Leader Tabitha Cale Denise Attaway LSU graduate students Other OSU Investigators and Engagement Core key personnel Kim Anderson and her lab crew Barbara Harper, CTUIR and OSU Stuart Harris, CTUIR Sandra Uesugi Naomi Hirsch Pat Berger Tribal Advisory committee members, especially Jamie Donatuto (Swinomish)and other Collaborators, including Catherine O’Neill Funding P42 ES016465 (PI Williams), Engagement Core Leader Harding) P30 ES000210 (PI Beckman) R21 ES020120 (PI Anderson) 13

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