Abstract
Background Health care decision-making requires research evidence and good judgement. This applies to policy making, as much as it does to deci sions about an individual's care. We have attempted to employ the principles of patient involvement and evidence-based medicine to the development of policies for communication about newborn blood spot screening.
Methods We identified points of communication along the newborn screening pathway and gathered evidence about these communication events. We asked three questions: what research evidence is available about screening and communication; what are parents' experiences of and preferences for communication about screening; and, to what extent does current parent information match the evidence, and meet parents needs? Drawing together these different forms of evidence, we employed consensus development methods, convening a multi-disciplined working group to guide our decisions in drafting communication resources and procedures. Finally we carried out a consultation to garner feedback on these draft communication policies.
Results Feedback from our consultation was largely positive. We made changes to the format of the parent leaflet, and simplified the content. Where we faced contradictory advice, we followed NICE guidelines, prioritising the views of the majority of parents.
Discussion We have employed a process of developing evidence-informed communication policy that incorporates a wide range of evidence, and incorporates the judgement of patients and health professionals, through the use of consensus development methods.
Get full access to this article
View all access options for this article.