Data-Sharing Issues for Community-Based Research Projects Involving Academic and Community Partners
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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. 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. 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. 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. 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. 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. Material and Data Sharing Agreement 7 27
- 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. 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. 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. 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. 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. 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. 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
Notes de l'éditeur
- Good morning. I’m Anna Harding, professor of Public Health at Oregon State University. My work is in the area of Environmental Public Health, and I am the PI of the Community Engagement Core for Oregon State University’s Superfund Research Program, and am a co-Investigator with the Gulf Oil Spill BRIDGES project Kim Anderson spoke about. I head up the outreach portion of the BRIDGES project, which has brought us both to LSU. You also see that I have the logo for the Confederated Tribes of the Umatilla Indian Reservation, which is our community partner for our SRP community-based research project. I have learned the real meaning about community-based research and about the importance of data-sharing issues from our Tribal partners, especially from Barbara Harper and Stuart Harris, who are Co-Investigators on the SRP project. Although my examples are from our work with Tribal entities, they are very applicable to any community-based partnership.
- We have developed our data sharing agreement in the context of developing a community based participatory research project with the Umatilla tribes. Our SRP project project (still ongoing) is to better understand the health risks associated with PAH exposures from traditional subsistence practices and to engage in capacity building with the Tribes.Slide summarizes guiding principles about community-based participatory research that we have been following in our project. All these points are important and essential. Community partners must have a role in identifying and defining problems they wish to investigate and actively participate in all phases of the research process. However, nothing would have moved forward if as the academic partner, we had not developed a trusting relationship with the Tribes, and if we had not made upfront decisions about data ownership and management. Can’t discuss all these points in detail, but I will share several examples to illustrate the above points.
- The relationship that investigators at OSU have with CTUIR has developed over a number of years. We started working together in 1998, and subsequently were co-investigators on an EPA Star grant to develop regional, ecologically-based exposure scenarios for use by Tribes in risks assessments, for example at Superfund sites. At the time, Tribes and EPA had no scenarios that reflected traditional subsistence lifestyles, although it was obvious that conventional suburban scenarios were not appropriate.In addition, OSU has a signed Memorandum of Understanding with CTUIR’s Department of Science & Engineering to foster tribal research and research partnerships.CTUIR and OSU worked together as co-equal investigators, both of us have presented the work and been first author on papers. The point is that this was a mutual effort, with equal “science” on both sides, not simply a university supplying science and results to the tribe. I mention this history because this has been our pathway in developing a trusting relationship with the tribes, but it certainly is applicable to working in any type of community-based partnership.
- The majority of investigators and students within our SRP had never done research with tribes, so the Engagement Core took this opportunity to educate the OSU community about tribal research issues. We sponsored a symposium in April 2010 focused on Tribal legal issues, research ethics, concepts in indigenous and western science, and integration of socio-cultural health indicators in Tribal risk research. The symposium featured speakers from CTUIR, the Swinomish Tribal Community and a tribal legal scholar.We hoped the symposium would contribute to building a parallel cultural capacity within our university of people who know how to work with tribes, understand a broader world view, who understand data needs, and who can be flexible in working with tribal schedules and processes.
- A third challenge that we faced being in a large Center was to match up needs and goals of the Tribe with that of the other projects being proposed in our SRP. The way we solved this dilemma was to fully integrate our efforts in the Engagement Core with several of the other projects and the Research Translation Core. Now a much larger groups of investigators from the center is participating in research with the tribe. Because the CTUIR has considerable research capability itself, the CTUIR is able to truly be equal partners in the Engagement Core. For this grant, the model of community engagement is not just transmission of summary information (depicted on the left), but rather one in which both OSU and tribal scientists are working together in all aspects of the research for this Core. The outreach is from the team of university and tribal scientists to their publics together, including communities, colleagues, and through dissemination of work. Not all tribes and community partners are at this level, but we encourage NIEHS to allow tribes and other community partners to guide their own research.
- The first component includes the purpose of the project and the parties that will be involved—OSU, CTUIR, PNNL.The second component describes the types of material and data to be collected. States the types of material and data to be collected and the general collection method—such as collection of environmental samples, biological samples.The third component describes constraints on material and data use. For example, materials and data supplied by the tribe to the researchers or collected by researchers on behalf of the tribe, remain tribal property, as noted in the previous slide.The fourth component addresses data access and security. Details the procedures for maintaining the physical security of the data and restricts access to approved project researchers. Requires that all persons who access the data will sign confidentiality agreement.
- The fifth component identifies risks and benefits of the research to the tribal community, for both the individual and the tribal community, as required as part of informed consent.The sixth component describes the process used for communicating the research and mutual review processes. Methods of communication are listed as well as a mutual review process, in which the CTUIR also agrees that it has equal responsibility for timely completion of research tasks and reports. The Agreement has also been helpful for the Tribes to understand that universities have deadlines and deliverables as well. The seventh element requires signatures on a confidentiality agreement from all who have access to the material and data collected in the project. You can see an example of that in the materials you have in your folder.A final point is that there is also timeline for post-completion of project and return of data to owners.
- There are many more people who are involved in this project than are listed on this slide, but I would especially like to thank the research teams and cores in our SRP.Besides Barbara and me, our Engagement Core includes our hardworking members Stuart Harris and Jack Butler, from CTUIR, Dave Stone and Sandra Uesugi, both at OSU.I’d like to acknowledge other SRP Project and Core Investigators, including Staci Simonich and her research team, especially Yuling Jia; Kim Anderson and her research team, Dan Sudakin and the Research Translation Core group, Katrina Waters (who is one of our Pacific NW National Laboratory partners) and the Biostatistics Core , the Analytical Chemistry Core, and Andres Cardenas, an MPH graduate student working in our Core. EVERYONE in our SRP has been supportive and helpful!Our Tribal Advisory Committee members has provided thoughtful advice, and Michelle Burke, especially, has been very generous with her time.We thank NIEHS, our funding agency, and Justin Crane for inviting us to participate in the webinar series.Thanks again! We’re looking Look forward to hearing your questions and comments.