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Effective Communication of Drug Safety Information to Patients and the Public

A New Look

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Abstract

Recent parallel developments in the fields of medicine and the social sciences are providing us with new insights and resources that have the potential for improving the effectiveness of drug safety communication and decision-making. These developments include medicine’s new look at patient safety with its emphasis on complex adaptive systems, education’s new appreciation for learning as an internal change process and risk communication’s evolving recognition that relevant knowledge may not be the exclusive property of ‘experts’.

Eight principles are drawn from this analysis: (i) there cannot be a safer drug until there is a safer system; (ii) all stakeholders are equal partners and have an equal voice in all deliberations; (iii) paternalism must be eliminated; (iv) the expertise for determining acceptable benefit and risk is dispersed throughout society; (v) patients and all stakeholders serve as both teachers and learners; (vi) all stakeholders are involved in the identification of their learning needs, processes and evaluation of outcomes; (vii) in a complex adaptive system all individual actions are interconnected and; (viii) patients must be involved in the continuous feedback and redesign of the evolving drug safety information system. The conclusion is that we are not asking the right questions; ‘what information should we communicate?’ and ‘how do we communicate more effectively?’ should be reframed to ask ‘how do we provide an equal voice for patients with the other stakeholders in the determination and communication of benefit-risk information?’ Some patients are not waiting. The International Alliance of Patient Organizations (IAPO), the Database of Individual Patient Experience (Dipex) and the Self-Help Group Clearinghouse are examples of international patient driven efforts to actively participate in their own care. The author suggests that the emerging discipline of inter-active management can contribute methodologies for creating citizenship models to generate the collective wisdom and translate it into action. A future research agenda calls for creating new models of public accountability that support these evolving systems of engaging the entire community in benefit-risk determination, communication and management.

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Notes

  1. 1 The consensus process used is a product of the scientific revolution in the field of systems analysis. The reader is referred to the pioneer work of Alexander Christakis (see also footnote no. 2). He and his colleagues are applying the rigours of the scientific method to reinvent the dialogue process in order to surface the wisdom of the community. This new scientific model is called demosophia, which in Greek means the ‘wisdom of the people’.

  2. 2 It should be noted that there is an emerging discipline called interactive management (IM) which studies this phenomenon of community and develops tools and processes to expedite the generation of the collective wisdom and translate it into action. The reader is referred to the website of the Institute for the Advance Study in the Integrative Sciences (IASIS) at George Mason University in Virginia ( http://www.gmu.edu/departments/t-iasis ) for annotated bibliographies encompassing this field; and to http://www.CWAltd.com for illustrations of the applications of this work in a variety of corporate, government and voluntary agency settings across an international spectrum.

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Acknowledgements

The author gratefully acknowledges the assistance of Betsy Hageman, James Kuperberg, Adam Scheffler and Rebecca Staples in the preparation of this article.

This work is the product of the author, who alone is responsible for errors of fact or interpretation. The views expressed in this article do not necessarily reflect those of any affiliated organisation.

Currently, Dr Vogt holds a Senior Fellowship position at the Institute for the Advancement of Community Pharmacy. This fellowship is made possible by an educational grant from Pfizer Inc.

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  1. Institute for the Advancement of Community Pharmacy, 11650 Mediterranean Ct, Reston, Virginia, 20190, USA

    Eleanor M. Vogt

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Correspondence to Eleanor M. Vogt.

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Vogt, E.M. Effective Communication of Drug Safety Information to Patients and the Public. Drug-Safety 25, 313–321 (2002). https://doi.org/10.2165/00002018-200225050-00002

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