Learning to Listen: Doing Federal Policy from the Bottom-Up in Indian Country

By Ibrahim Garba, MA, JD, LLM

In a Philosophy and Medicine course I took in graduate school, the professor spent the semester comparing two models of medicine: the biomedical and the humanistic. Broadly speaking, the biomedical model is based on a view of persons being measurable, empirical entities that can be restored to health through the return of bodily functions and processes to a state of normalcy (statistically defined). In contrast, the humanistic model proposes a dualistic view of personhood, framing humans as being constituted of both “body” and “self”. Consequently, restoring the measurable, empirical component of a person (i.e. the body) is only part of the task of healing. There remains the self, an entity so easily caricatured as the ethereal substance that has beguiled philosophers, theologians, and poets for centuries. For proponents of the humanistic model, the tools the biomedical model deploys in curing the body are ill-suited for the task of healing the self (and, hence, the whole person). The professor used the comparison to explain how different understandings of reality (metaphysics) influence what constitutes knowledge (epistemology) and how these two factors, in turn, determine the model of medicine adopted and practiced.

Another point I took from the professor’s comparison (apart from his misgivings about the biomedical model) was the importance of listening. A common criticism of the biomedical model is that it makes the patient passive—or at least renders her input irrelevant. Because the biomedical model relies heavily on objective measurements (often taken with sophisticated technological hardware), the subjective input and experiences of individual patients tend toward the superfluous. In contrast, the humanistic model considers the input of the patient not just useful but essential, for only through the patient’s words does the physician have access to certain parts of her “self”. In other words, effective humanistic medicine requires cultivation of the art of listening.

Powwow on the final night of AAIP 2014. Photo by Andrew Harrison.

This lesson came to mind in the context of public health as I sat in a Listening Session at the 42^nd Annual Meeting of the Association of American Indian Physicians (AAIP) in Denver, Colorado from July 22 through 27, 2014. As a Satcher Health Policy Leadership Fellow at the Morehouse School of Medicine (Atlanta, GA), my practicum was with the Office for State, Tribal, Local, and Territorial Support (OSTLTS) at the US Centers for Disease Control and Prevention (CDC). OSTLTS has been partnering with other CDC offices, AAIP, and an external consultant (Dr. Doris Cook) to help formulate internal policy specific to the management of American Indian/Alaska Native (AI/AN) biological specimens. The dearth of such policies across many agencies and institutions has become a matter of concern, especially following the Havasupai case, in which Arizona State University researchers used blood initially collected for diabetes research for unconsented anthropological and genetic studies (see this link for further nuances on certain aspects of the case). Although most specimens at the CDC arrive through channels other than research (e.g. infectious and environmental disease outbreak investigations, national health surveys, etc.), a policy that assures respectful treatment of AI/AN specimens engenders trust, a condition which fosters ongoing public health partnerships and collaborations with AI/AN communities.

Powwow conclusion. Dr. David Baines on the far right in white shift/jeans (the first AI/AN graduate of Mayo Medical School) and other AAIP leaders. Photo by Andrew Harrison.

The Listening Sessions provided an opportunity for members of the AI/AN community to make their views known by responding to a series of questions posed by Dr. Cook after a brief background presentation. Participants were encouraged to speak their minds regarding personal and/or tribal communal beliefs or practices related to biological specimens. Beyond clarifying the meaning of questions posed and responses offered, the facilitator did not direct the feedback of the participants. Some recurring themes in the Session included: general distrust of researchers and mainstream institutions due to past experiences; need for transparency; importance of including AI/AN communities in research; restriction of specimen use to the terms of consent; sacred connection of body parts to person (in some communities); widespread desire to have specimens returned to communities of origin; and request for overall respectful treatment of biological specimens.

Information heard from participants at the various Listening Sessions will eventually be gathered and inform the policy formulation process at the CDC. These episodes of structured and intentional listening (there are several more being organized for the process) will play a critical role in building trust between AI/AN populations and the external stakeholders (researchers, physicians, public health workers, etc.) who partner with them to address the health disparities in their communities.

To resume the metaphor, AI/AN policy can be formulated on the biomedical model, in which the input of communities tends toward the superfluous, as various mechanisms are used to gather reliably objective data to inform the policy process. Here, communities play a passive, if not dispensable, role in the process. Alternatively, AI/AN policy can be developed on the humanistic model, in which the input of communities is considered essential to crafting responsive, transparent, trust-building policies. The Listening Sessions organized by OSTLTS, AAIP, and Dr. Cook are a good example of the latter and (I believe) more sustainable approach.

Ibrahim Garba was born and raised in northern Nigeria. He completed his MA at Baylor University, JD at Notre Dame Law School, and LLM at the Indiana University McKinney School of Law. He recently completed the Satcher Health Policy Leadership Fellowship at the Morehouse School of Medicine (Atlanta, GA).

Ibrahim Garba

Acknowledgement: My sincere appreciation goes to Dr. Judith S. Kaur (Mayo Clinic, Medical Oncology) and the entire Mayo Clinic Spirit of EAGLES staff for making my attendance at this year’s AAIP meeting possible. I also wish to thank Delight Satter and Dr. Doris Cook for their mentorship, and the AI/AN specimen policy teams at OSTLTS and AAIP for enabling a collegial environment for learning and working. Finally, I am grateful to the faculty (especially Drs. Harry Heiman, Carey Bayer, and Brian McGregor) and staff at the Satcher Health Leadership Institute for an enlightening 10-month immersion in the world of health policy.

Editorial comment (Andrew M. Harrison): I attended AAIP 2014 with Ibrahim and am extremely grateful for this insightful and outstanding contribution. Please find last year’s blog post on AAIP 2013 at this link.