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Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

ABSTRACT: Báa nnilah is a chronic illness self-management program designed by and for the Apsáalooke (Crow) community. Arising from a collaboration between an Indigenous nonprofit organization and a university-based research team, Báa nnilah's development, implementation, and evaluation have been influenced by both Indigenous and Western research paradigms (WRPs). Báa nnilah was evaluated using a randomized wait-list control group design. In a WRP, contamination, or intervention information shared by the intervention group with the control group, is actively discouraged as it makes ascertaining causality difficult, if not impossible. This approach is not consonant with Apsáalooke cultural values that include the encouragement of sharing helpful information with others, supporting an Indigenous research paradigm's (IRP) goal of benefiting the community. The purpose of this paper is to address contamination and sharing as an area of tension between WRP and IRP. We describe how the concepts of contamination and sharing within Báa nnilah's implementation and evaluation are interpreted differently when viewed from these contrasting paradigms, and set forth a call for greater exploration of Indigenous research approaches for developing, implementing, and evaluating intervention programs in Indigenous communities. (Improving Chronic Illness Management with the Apsáalooke Nation: The Báa nnilah Project.: NCT03036189), ClinicalTrials. gov: NCT03036189).

SUBMITTER: Allen S

PROVIDER: S-EPMC8926935 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature

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Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

Allen Sarah S Held Suzanne S Milne-Price Shauna S McCormick Alma A Feng Du D Inouye Jillian J Schure Mark M Castille Dottie D Howe Rae B RB Pitts Mikayla M Keene Shannen S Belone Lorenda L Wallerstein Nina N

American journal of community psychology 20210917 1-2

Báa nnilah is a chronic illness self-management program designed by and for the Apsáalooke (Crow) community. Arising from a collaboration between an Indigenous nonprofit organization and a university-based research team, Báa nnilah's development, implementation, and evaluation have been influenced by both Indigenous and Western research paradigms (WRPs). Báa nnilah was evaluated using a randomized wait-list control group design. In a WRP, contamination, or intervention information shared by the ...[more]

PMID: 34534371

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Project description:BackgroundThe meaningful sharing of health data between different stakeholders is central to the advancement of science and to improve care offered to individual patients. However, it is important that the interests of individual stakeholders involved in this data sharing ecosystem are taken into account to ensure fair data sharing practices. In this regard, this qualitative study investigates such practices from the perspectives of a subset of relevant Swiss expert stakeholders, using a distributive justice lens.MethodsUsing purposive and snowball sampling methodologies, 48 expert stakeholders from the Swiss healthcare and research domains were recruited for semi-structured interviews. After the experts had consented, the interviews were audio-recorded and transcribed verbatim, but omitting identifying information to ensure confidentiality and anonymity. A thematic analysis using a deductive approach was conducted to identify fair data sharing practices for secondary research purposes. Themes and subthemes were then identified and developed during the analysis.ResultsThree distributive justice themes were identified in the data sharing negotiation processes, and these are: (i) effort, which was subcategorized into two subthemes (i.e. a claim to data reciprocity and other reciprocal advantages, and a claim to transparency on data re-use), (ii) compensation, which was subcategorized into two subthemes (i.e. a claim to an academic compensation and a claim to a financial compensation), and lastly, (iii) contribution, i.e. the significance of data contributions should be matched with a corresponding reward.ConclusionsThis qualitative study provides insights, which could inform policy-making on claims and incentives that encourage Swiss expert stakeholders to share their datasets. Importantly, several claims have been identified and justified under the basis of distributive justice principles, whilst some are more debatable and likely insufficient in justifying data sharing activities. Nonetheless, these claims should be taken seriously and discussed more broadly. Indeed, promoting health research while ensuring that healthcare systems guarantee better services, it is paramount to ensure that solutions developed are sustainable, provide fair criteria for academic careers and promote the sharing of high quality data to advance science.

Project description:Indigenous communities in Latin America and elsewhere have complex bodies of knowledge, but Western health services generally approach them as vulnerable people in need of external solutions. Intercultural dialogue recognises the validity and value of Indigenous standpoints, and participatory research promotes reciprocal respect for stakeholder input in knowledge creation.As part of their decades-long community-based work in Mexico's Guerrero State, researchers at the Centro de Investigación de Enfermedades Tropicales responded to the request from Indigenous communities to help them address poor maternal health. We present the experience from this participatory research in which both parties contributed to finding solutions for a shared concern. The aim was to open an intercultural dialogue by respecting Indigenous skills and customs, recognising the needs of health service stakeholders for scientific evidence.Three steps summarise the opening of intercultural dialogue. Trust building and partnership based on mutual respect and principles of cultural safety. This focused on understanding traditional midwifery and the cultural conflicts in healthcare for Indigenous women. A pilot randomised controlled trial was an opportunity to listen and to adjust the lexicon identifying and testing culturally coherent responses for maternal health led by traditional midwives. Codesign, evaluation and discussion happened during a full cluster randomised trial to identify benefits of supporting traditional midwifery on maternal outcomes. A narrative mid-term evaluation and cognitive mapping of traditional knowledge offered additional evidence to discuss with other stakeholders the benefits of intercultural dialogue. These steps are not mechanistic or invariable. Other contexts might require additional steps. In Guerrero, intercultural dialogue included recovering traditional midwifery and producing high-level epidemiological evidence of the value of traditional midwives, allowing service providers to draw on the strengths of different cultures.

Dataset Information

Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

Publications

Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

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