Involvement of patients and parents in research undertaken by the Australian and New Zealand Fontan Registry

Cardiol Young. 2018 Apr;28(4):517-521. doi: 10.1017/S1047951117001494. Epub 2017 Aug 17.

Abstract

Research that is closely connected with the population it is studying and in which the translational value to healthcare is high is a laudable goal, but it is not often achieved. The Australian and New Zealand Fontan Registry has developed a model for involving patients and parents of children with a Fontan circulation in its research. The model involves consumer participation in the overarching Steering Committee, and has set in place multiple channels of communication allowing the early dissemination of research findings before peer-reviewing, and consumer feedback at all levels of the research. Our focus was not only to provide information but also to give a voice to this community and include them as researchers. These communication channels are a part of a larger network involving the practitioner community, support groups, funding agencies, and health authorities. This close connection with the target research population has multiple benefits: safeguarding the project; controlling and adjusting both the messages conveyed and the investigations; building a community; raising new ideas for research; increasing our research participation rate; increasing the weight of our endeavours; and, above all, increasing our own satisfaction in our research undertakings. In conclusion, the interactions with patients and their families within Australia and New Zealand provide one potential model for the involvement of patients and parents that may result in research that is more relevant, focussed, and practically applicable in a healthcare setting.

Keywords: CHD; Fontan; consumer involvement in research.

Publication types

  • Review

MeSH terms

  • Australia / epidemiology
  • Biomedical Research / organization & administration*
  • Child
  • Communication
  • Decision Making*
  • Heart Defects, Congenital / epidemiology*
  • Humans
  • Morbidity
  • New Zealand / epidemiology
  • Patient Satisfaction
  • Registries*