AMA Journal of Ethics^®

Abstract

The arts can touch places that are difficult to recognize and understand, capture in words, or measure by numbers—whether you’re an artist, a patient, or an educator. This ineffability presents a dilemma for practitioners and researchers in arts in health when questions of legitimacy, efficacy, program implementation, and research funding are tied to outcomes-based research. Ethical tensions arise when traditional public health and clinical research methods are the wrong tools for capturing what’s vital about the arts. This article argues that being a responsible arts in health researcher requires interrogating what counts as evidence, especially when the insistence on rigor risks oversimplifying and diminishing the power of the arts. It further argues for equity in arts in health research, including equity in investigative strategies that value both the arts and the research.

What’s Evidence?

Medicine aspires to be evidence based. As Guyatt et al summarized: “Evidence-based medicine de-emphasizes intuition, unsystematic clinical experience, and pathophysiologic rationale as sufficient grounds for clinical decision making and stresses the examination of evidence from clinical research.”¹ Evidence-based approaches require a significant investment in funding and human capital. Thinking about evidence—what counts as legitimate evidence, who decides what counts, and how we value certain types of evidence—ultimately influences which programs and research are considered worth funding. Consequently, absence of rigorous evidence, as defined by evidence-based medicine, can slow or shut down otherwise important research.

In the field of arts in health, researchers need to explore what counts as evidence and interrogate the validity of methods used to generate that evidence. According to Sackett, “the practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research.”² The call for evidence all too often prioritizes results of randomized controlled trials (RCTs). However, evidence synthesis methods have expanded to include evidence generated from observational and qualitative studies. This acknowledgement—that quality evidence for health care decision making can derive from many sources and through diverse methods—contextualizes the conversation of research in arts in health.

Rigor in research is characterized by the “strict application of the scientific method to ensure unbiased and well-controlled experimental design, methodology, analysis, interpretation and reporting of results.”³ Insisting upon a framework of “rigor” without considering how this comports with arts practice, steeped in traditions and theories of its own, does not serve the purpose of generating rigorous evidence. This paper argues that authentic and equitable arts in health research requires expanding our understanding of acceptable research rigor to honor the art and the intentions of the artist.

Mystery of the Arts

The creation of art is often mysterious, unpredictable, and difficult to put into words. The arts can touch places that are challenging to recognize and understand, whether you’re an artist, a patient, or an educator. Art has been called a “strange tool” that reveals what exists in the background.⁴ It’s not a phenomenological process easily explained or measured. Art is a process that allows the art-maker and art-receiver to see themselves and the world anew. The practice of art making is just as much about the process as it is about the product. Art and research share the pursuit of what’s unknown, an investigation that takes us into ourselves and into the world.

The strength of arts-based interventions lies in this unmeasurable, malleable process. How do you measure meaning in a person’s life or the power of engagement, connection, and hope? By employing rigid objectives and methods in the service of rigorous outcome measures, we risk controlling for and rejecting elements of discovery in the arts. Thus, if we examine the arts through a clinical research paradigm, we risk losing the ability to identify what is vital. And if we lose what’s vital, is the evidence we pursue really evidence?

Mapping Evidence

In 2016, the Rhode Island Arts in Health Advisory Group attempted to understand the evidence base in arts in health. Artists, clinicians, community members, patients, and researchers partnered to complete a scoping review and evidence map of arts-based health care interventions.⁵ Our interdisciplinary research team focused on the importance of rigor in arts in health research in patient care and public health, noting that legitimacy, efficacy, and funding are tied to rigorous research. The scoping review allowed us to explore the existing research in arts in health; we screened over 6000 published studies employing various research methods—programmatic evaluation, qualitative methods, analysis of observational data, and RCTs. We identified 418 studies that described a population and intervention and measured at least one outcome, all characteristics of rigorous research design. The review indicated that arts-based interventions could be, and in fact had been, researched in health care and that their impacts were meaningful to patients and communities. However, this validation of arts in health research was felt by many on our team to be bittersweet.

The artist’s ethics of practice and personal ethos may not align with clinical research practices, but that doesn’t mean the artist’s practices are less rigorous.

Our discussions revealed previously unmapped ethical tensions about the relationship between methodological and statistical rigor and the mystery of the arts. In our scoping review, we excluded many fascinating studies as “research waste” because they did not meet our criteria for rigorous research. What was lost by not including the other roughly 5500 studies in our scoping review?

Artists on our team prioritized community needs over all other aspects of our work, even over rigor. They pushed hard to have less rigorous studies included, such as work that focused on racism, social justice, recidivism and incarceration, and climate change, because studies on these topics aligned with artists’ notions of individual and community health. In the end, these were excluded because they didn’t fit strict definitions from public health and medicine. As a result, we discounted meaningful directions for arts in health inquiry. We ignored the artists and the artistic methods to the detriment of our research.

Navigating Rigor

The arts have the power to make us uncomfortable, disrupting our world and pushing us to see in a new way. Arts in health research is challenging people in existing power structures to reconsider the definition of a valid health care intervention. However, in order for this work—which does not fit neatly within existing systems—to be valued, arts in health researchers must overcome hurdles that include negotiating both institutional forces and the unacknowledged assumptions embedded in currently accepted standards of rigorous research.

The assumptions embedded in “rigorous” research standards accommodate the needs of and benefit the academy. The artist’s ethics of practice and personal ethos may not align with clinical research practices, but that doesn’t mean the artist’s practices are less rigorous. Yet innovative arts-based practices might be devalued in favor of less interesting work that is amenable to clinical research methods. Indiscriminate data-driven methods obscure the goals of arts in health research and perhaps distance it from the very human impact that makes arts-based work meaningful. Recognizable units of measurement that inadequately capture participant experiences risk generating evidence that is inauthentic at best and potentially unethical at its core. How should we negotiate this tension between research rigor and creative rigor?

An Agenda for Arts in Health Research

To authentically capture the ineffability of arts-based interventions, research that seeks to employ methods for inquiry, discovery, and understanding must be valued. We have an obligation to pursue the best possible methods for generating evidence for arts in health. We must empower researchers to think more creatively about arts in health research rather than expecting the arts to comply with accepted standards of rigorous research. We must call for an expanded definition of research rigor—informed by respect for arts-based practices and their commitment to adaptability and iterative processes. If the arts are to be dignified and not just measured in research, we must respect the nonlinear processes critical to the arts experience, even going so far as to consider uncertainty and mystery as forms of knowledge, not as a failure of evidence.

We must curate spaces for interdisciplinary dialogue that explores research methodologies and challenges normative research standards. This dialogical process is only possible if funding mechanisms value meaningful evidence in nontraditional forms. Rigorous methods in arts in health research must be broadened and pluralized. However, for these valuable and deep explorations to take place, we must solidify opportunities for true interdisciplinary and inclusive dialogue that represents the rich arts in health community. We are not arguing for poor study design. Rather, we are making space for evidence that honors the power and the mystery of the arts while demonstrating a commitment to authentic research.