We also asked research nurses what they thought studies should do to support patient involvement in research. Nearly all research nurses said that patient groups should be involved ‘in designing the study or reviewing the design’. Research nurses reported that patient feedback on the study should be continuously sought and used to enhance not only how the study was run but recruitment and retention too.
Communication was seen as key by nearly all research nurses. Comments included: ‘…information provision, articulating appreciation of patients commitments, addressing concerns the patient may have openly and honestly. Patients should be made to feel more involved in the research with regular updates and information sessions to enable engagement and prolong participation’.
#WhyWeDoResearch is an invaluable tool, it has provided the public, research staff and participants with a voice to proudly share why research is important to them. It has uniquely joined all research users together but we need to ensure that the enthusiasm in joining the research family is not lost. #WhyWeDoResearch is important to us all and we need to make certain that the value of #WhyWeDoResearch is not lost during the research process itself.