A systematic development process for patient decision aids

Angela Coulter*, Diana Stilwell, Jennifer Kryworuchko, Patricia Dolan Mullen, Chirk Jenn Ng, Trudy van der Weijden

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

257 Citations (Web of Science)

Abstract

The original version of the International Patient Decision Aid Standards (IPDAS) recommended that patient decision aids (PtDAs) should be carefully developed, user-tested and open to scrutiny, with a well-documented and systematically applied development process. We carried out a review to check the relevance and scope of this quality dimension and, if necessary, to update it.Our review drew on three sources: a) published papers describing PtDAs evaluated in randomised controlled trials and included in the most recent Cochrane Collaboration review; b) linked papers cited in the trial reports that described how the PtDAs had been developed; and c) papers and web reports outlining the development process used by organisations experienced in developing multiple PtDAs. We then developed an extended model of the development process indicating the various steps on which documentation is required, as well as a checklist to assess the frequency with which each of the elements was publicly reported.Key features common to all patient decision aid (PtDA) development processes include: scoping and design; development of a prototype; 'alpha' testing with patients and clinicians in an iterative process; 'beta' testing in 'real life' conditions (field tests); and production of a final version for use and/or further evaluation. Only about half of the published reports on the development of PtDAs that we reviewed appear to have been field tested with patients, and even fewer had been reviewed or tested by clinicians not involved in the development process. Very few described a distribution strategy, and surprisingly few (17%) described a method for reviewing and synthesizing the clinical evidence. We describe a model development process that includes all the original elements of the original IPDAS criterion, expanded to include consideration of format and distribution plans as well as prototype development.The case for including each of the elements outlined in our model development process is pragmatic rather than evidence-based. Optimal methods for ensuring that each stage of the process is carried out effectively require further development and testing.
Original languageEnglish
Article numberS2
JournalBMC Medical Informatics and Decision Making
Volume13
DOIs
Publication statusPublished - 29 Nov 2013

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