Patients as Policy Actors ed. by Beatrix Hoffman, et al. (review)
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Patients as Policy Actors provides food for thought on the representation of patients’ voices in a variety of health care arenas. This edited anthology is both academic and intended to foster change. Through compelling case studies based on qualitative research and grounded in documented history, it evaluates patient effectiveness, from patients’ struggles to be heard to their successful mobilization of resources for shared interests. The book’s three sections (on voices of “silent” patients, collective action, and movement outcomes) are woven together with essays that trumpet advocacy and a concluding chapter that advances principles for health policy. The chapter authors also include constructive commentary about possible strategies, barriers, and next steps.
The book evaluates how the modern narrative of the “empowered patient” manifests in environments with power differentials and within an increasingly interconnected world. A chapter on traumatic brain injuries chronicles the many obstacles family members face when thrust into advocacy roles, including the steep learning curve involved in unplanned-for medical conditions, sheer exhaustion, and the shock of relentless challenges. Another chapter describes intensified communication imbalances between doctors and minority patients. The activism described in this volume most often stems from individuals or family members observing shortcomings in their medical care.
Examples include some large publicized movements such as childbirth, mental health care, and health care disparities. The chapter on childbirth explores why women still labor under a medical model that accommodates doctors over birth mothers, despite their potential power as agents of change. The chapters on the voices of “consumer-survivors” in mental health care and on the poor’s establishment of the National Welfare Rights Organization in response to our two-tiered system highlight their relative victories as disenfranchised groups. The volume also contains compelling accounts of new forms of activism that are made possible—and also warranted—by modern biotechnology and our burgeoning connectivity. These cases are fascinating in their own right, and also salient for their inspiration and cautionary attributes.
Several chapters describe health care consumers’ intimate involvement in the process. One describes the unorthodox steps of a modern advocate, who, spurred by his wife’s rare form of cancer, appealed directly to key researchers (rather than contributing through established channels), and even provided tissue for study as well as the infrastructure by taking advantaging of economies of scale. His approach required significant cultural and financial capital, which are not available to many. Another difficulty facing advocacy pioneers for rare or orphan diseases is their isolation from others who may be working in a parallel fashion, thus missing out on the benefit of each other’s contributions.
At the core are complex issues raised by the commodification, ownership, and control of human tissue. In another example, parents of a child with Canavan [End Page 298] disease, a fatal genetic disorder, succeeded to mobilize funds and human tissue toward the discovery of a gene that could enable early diagnostic testing. However, when the entrusted researcher discovered the Canavan gene, he patented it, thereby limiting access to tests for parents or further research by other scientists. Feeling betrayed, the parents sued the researcher. The book describes other custody battles over tissue such as a lawsuit by a leukemia survivor who inadvertently discovered his cells had been sampled, patented as a cell line, and sold to a biotech firm, all without his knowledge or consent. These individuals join growing numbers of aware “human subjects” fighting for their rights. This volume raises important questions about this new biotech “marketplace” and appropriate measures for disclosure and patient protection.
It also speaks to the unintended consequences that can arise. A chapter on early screening describes a set of parents who mobilize around the tragedy of losing a child to a treatable genetic disorder. Their “urgency narrative” helped sway legislative decisions to support mandatory early screening, and not only for this disorder but many other abnormalities. These policies reduce...
