From Annette’s perspective, clarity of roles is really important
Well I think sometimes patients misunderstand their role in terms of research – they think it’s going to be service that they’ll receive. Like so the communication, like you have to be sure that you explain well what the role is and what the purpose is, and the fact that they’re going to do a lot of waiting, you know that things – that research is a slow process. So I think often like for people – for patients who are new to the research world, you have to be sure that they really understand what their roles are and what it is and what it isn’t, so that they’re not disappointed.
More from: Annette
- Measuring Impact of Partnership – AnnetteAnnette shares an example of how her team is measuring engagement in child health research
- Improving Patient Care and Experiences – AnnetteAnnette discusses how building a community of patient-oriented researchers can influence future research initiatives
- Impact on Research – Annette (2)Annette recalls that, in her project, engaging patients influenced how researchers asked questions.
- Impact on Research – AnnetteEngaging patients ensured that research questions were more relevant in Annette’s project.
- Looking forward – AnnetteIdeally, Annette would like to see patient engagement evolve from a community to a movement with real influence.
- Supports needed – AnnetteAnnette’s research group is developing tools and approaches for patient engagement training.
- Motivations – AnnetteBeing involved in patient engagement helped Annette reflect on her work and its intended purpose
- Advice to others – AnnetteFrom Annette’s perspective, clarity of roles is really important
- Valuing Contributions – AnnetteAnnette’s team developed a guideline with honorariums rather than hourly rates
- Developing partnerships – AnnetteAnnette’s team developed a tool to match researchers with families and children