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Narrative Matters: The Power of the Personal Essay in Health Policy

Narrative Matters: The Power of the Personal Essay in Health Policy Edited by Fitzhugh Mullen , Ellen Ficklen and Kyna Rubin . Published by the John Hopkins University Press . Distributed by Footprint Books. 293 pages with index. ISBN 0‐8018‐8479‐9 . Reviewed by Karen Willis School of Sociology and Social Work, University of Tasmania In 1999, the US based journal Health Affairs decided to devote a section to personal narratives that “put a human face on the policy issues”. Narrative Matters is a collection of these articles. While health strategies and policies must be informed by sound evidence often derived from larger, generalisable studies, we must also be aware of the power of the personal story in highlighting deficiencies in practice, alternative ways of viewing a problem, and providing a human face to a policy decision. The collection of articles in Narrative Matters does just that. The articles have been organised into eight chapters, each comprising three or more narratives. Starting with a brief section on the importance of narrative in influencing policy direction, the collection tackles issues of finance and health care provision (chapter 2), working within the system (chapter 4), professional issues (chapter 5) and practical ethics (chapter 8), the influence of pharmaceutical companies (chapter 6), and the experience of being, or treating, an individual seeking care (chapters 3 and 7). It is difficult to summarise such a collection of wide‐ranging topics. There are, however, two important ways in which they are linked. The first is the way that the stories told do more than simply reveal a personal tragedy or triumph. Authors look beyond the essence of the story to relate it to the broader issues of the health care system. In one sense, this is capturing the sociological imagination – the capacity to look beyond a personal trouble to a public issue. For example, Stone's analysis of her mother's experience of aged care is used to point to the inadequacies of a market model of care. Several authors reflect on their own experience of providing care, and how this is linked to a health system where people still face race discrimination (e.g. Calman, Gamble). The clear links between the personal tragedy of road trauma and public policy are explored by Derksen. The second way in which the stories are linked is in their universal belief that the US health care system is not serving its key stakeholders well. The breadth of the articles that explore the experience of consumers, accounts of the constraints on clinical decision making, and professional and ethical issues all point to a system that is in need of change. Complex funding systems that ultimately affect the quality of care received are the focus of narratives by Batavia, Raeburn and Winakur. They cover issues associated with disability, adolescents and mental illness, and dementia. The way that ethical decision making comes up against professional or institutional cultures is discussed by Boyte, Calman and Rowe. A linking theme between the stories is inequality – where poor patients, patients of colour, and those without insurance suffer the consequences of system faults and where clinicians struggle to deliver best care in difficult circumstances. Some stories reflect on how to effect change. For example, in ‘Learning Genetics’ (Terry), the power of consumers in shaping a research agenda demonstrates how action borne from experiencing the effects of illness can have remarkable results. It also demonstrates the tenacity required to do so. Similarly, Lerner's story of becoming a grant maker points to the challenges, but also the successes when working to distribute research funding. Steinberg provides an interesting reflection on his encounter with a group of people offering to become kidney donors for altruistic reasons. In the US health care system, health care policy makers and practitioners are faced continually with the stark reality of the failures of a market‐based system. In Australia, it is possible to persuade ourselves that such stark differences in access and treatment do not occur. However, reading this text and considering the extent to which the stories may be universal could be a salutary experience for those working in a system where we have a rhetoric of equality not always matched in practice. To take one example, the issues raised by a system emphasising ‘choice’ in health insurance arrangements are similar to those identified in ‘Blind Faith and Choice’ (Edwards). Therefore, on the one hand, it is easy to dismiss the value of this collection because it deals with specifically US policy problems, but on the other, it encourages reflection on the policy challenges within our own system of health care provision. Those authors writing about being a professional in a system with poor workplace practices (Derksen), where funding is tight (Mullan), and where they are encouraged not to ‘buck the system’ (Adams, Bingham) are indeed writing about universal themes in a Western health care system. Similarly, the stories of pharmaceutical influence have immediate relevance to the Australian context (chapter 6). The collection makes interesting reading and the discrete nature of the stories told means that readers may select only those most relevant to them. There are many instances where individual stories would be useful for teaching purposes. However, while this is a strength of the book, I think it would have been useful to provide some commentary throughout each of the chapters to highlight key issues and discuss how knowledge from the stories can contribute to redirecting health policy as a whole. While it is clear that the authors seek to link individual narratives to wider societal issues, the editors could have extended this to build a more coherent analysis. Narratives are important, but it is what we do with them in our attempts to make a better health system that makes them meaningful. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

Narrative Matters: The Power of the Personal Essay in Health Policy

Australian and New Zealand Journal of Public Health , Volume 32 (2) – Apr 1, 2008
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Publisher
Wiley
Copyright
© 2008 The Authors. Journal Compilation © 2008 Public Health Association of Australia
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1753-6405.2008.00208.x
Publisher site
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Abstract

Edited by Fitzhugh Mullen , Ellen Ficklen and Kyna Rubin . Published by the John Hopkins University Press . Distributed by Footprint Books. 293 pages with index. ISBN 0‐8018‐8479‐9 . Reviewed by Karen Willis School of Sociology and Social Work, University of Tasmania In 1999, the US based journal Health Affairs decided to devote a section to personal narratives that “put a human face on the policy issues”. Narrative Matters is a collection of these articles. While health strategies and policies must be informed by sound evidence often derived from larger, generalisable studies, we must also be aware of the power of the personal story in highlighting deficiencies in practice, alternative ways of viewing a problem, and providing a human face to a policy decision. The collection of articles in Narrative Matters does just that. The articles have been organised into eight chapters, each comprising three or more narratives. Starting with a brief section on the importance of narrative in influencing policy direction, the collection tackles issues of finance and health care provision (chapter 2), working within the system (chapter 4), professional issues (chapter 5) and practical ethics (chapter 8), the influence of pharmaceutical companies (chapter 6), and the experience of being, or treating, an individual seeking care (chapters 3 and 7). It is difficult to summarise such a collection of wide‐ranging topics. There are, however, two important ways in which they are linked. The first is the way that the stories told do more than simply reveal a personal tragedy or triumph. Authors look beyond the essence of the story to relate it to the broader issues of the health care system. In one sense, this is capturing the sociological imagination – the capacity to look beyond a personal trouble to a public issue. For example, Stone's analysis of her mother's experience of aged care is used to point to the inadequacies of a market model of care. Several authors reflect on their own experience of providing care, and how this is linked to a health system where people still face race discrimination (e.g. Calman, Gamble). The clear links between the personal tragedy of road trauma and public policy are explored by Derksen. The second way in which the stories are linked is in their universal belief that the US health care system is not serving its key stakeholders well. The breadth of the articles that explore the experience of consumers, accounts of the constraints on clinical decision making, and professional and ethical issues all point to a system that is in need of change. Complex funding systems that ultimately affect the quality of care received are the focus of narratives by Batavia, Raeburn and Winakur. They cover issues associated with disability, adolescents and mental illness, and dementia. The way that ethical decision making comes up against professional or institutional cultures is discussed by Boyte, Calman and Rowe. A linking theme between the stories is inequality – where poor patients, patients of colour, and those without insurance suffer the consequences of system faults and where clinicians struggle to deliver best care in difficult circumstances. Some stories reflect on how to effect change. For example, in ‘Learning Genetics’ (Terry), the power of consumers in shaping a research agenda demonstrates how action borne from experiencing the effects of illness can have remarkable results. It also demonstrates the tenacity required to do so. Similarly, Lerner's story of becoming a grant maker points to the challenges, but also the successes when working to distribute research funding. Steinberg provides an interesting reflection on his encounter with a group of people offering to become kidney donors for altruistic reasons. In the US health care system, health care policy makers and practitioners are faced continually with the stark reality of the failures of a market‐based system. In Australia, it is possible to persuade ourselves that such stark differences in access and treatment do not occur. However, reading this text and considering the extent to which the stories may be universal could be a salutary experience for those working in a system where we have a rhetoric of equality not always matched in practice. To take one example, the issues raised by a system emphasising ‘choice’ in health insurance arrangements are similar to those identified in ‘Blind Faith and Choice’ (Edwards). Therefore, on the one hand, it is easy to dismiss the value of this collection because it deals with specifically US policy problems, but on the other, it encourages reflection on the policy challenges within our own system of health care provision. Those authors writing about being a professional in a system with poor workplace practices (Derksen), where funding is tight (Mullan), and where they are encouraged not to ‘buck the system’ (Adams, Bingham) are indeed writing about universal themes in a Western health care system. Similarly, the stories of pharmaceutical influence have immediate relevance to the Australian context (chapter 6). The collection makes interesting reading and the discrete nature of the stories told means that readers may select only those most relevant to them. There are many instances where individual stories would be useful for teaching purposes. However, while this is a strength of the book, I think it would have been useful to provide some commentary throughout each of the chapters to highlight key issues and discuss how knowledge from the stories can contribute to redirecting health policy as a whole. While it is clear that the authors seek to link individual narratives to wider societal issues, the editors could have extended this to build a more coherent analysis. Narratives are important, but it is what we do with them in our attempts to make a better health system that makes them meaningful.

Journal

Australian and New Zealand Journal of Public Health – Wiley

Published: Apr 1, 2008

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