Annette discusses how building a community of patient-oriented researchers can influence future research initiatives
Transcript
But we’re trying to help – by helping support researchers doing their research using a patient-oriented research approach, we’re more likely to influence the way they do research in the future. So we’re really trying to build not only research teams that do patient oriented research by engaging patients, but eventually building a community of patient-oriented researchers, who then influence others so that it becomes like a trickle effect. That they then influence their trainees and -So that we have more impact that way in sort of – in ensuring that people really adopt a patient-oriented research approach. So they really understand that in – that this is an approach that ensures that your questions are relevant, that the ways you’re doing your research are feasible and meaningful for patients, that the outcomes you’re measuring are not only standardised and quantitative and what typical researchers use, but actually have relevance to those who live the experience that you’re trying to study. So that the outcome measures are really the most relevant and most meaningful for the patient and their families, and that the interventions really are more likely to have an impact.
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- Measuring Impact of Partnership – AnnetteAnnette shares an example of how her team is measuring engagement in child health research
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- 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