The consumer-led research project, ‘Minimising the burden of haematopoietic stem cell transplant through PRMs’, is funded by The CEIH, and supports and promotes consumer-led research in patient reported measures. We’re pleased to welcome Andrew Knox and Graham Lewis to the team as the consumer co-leads for the project.
Andrew and Graham have been busy working with Nicole Loft, (Nurse Practitioner and co-lead) and Hannah Wardill (Researcher and co-lead) and the extended project team, exploring the best ways to engage with stem cell transplant recipients for collection of information, considering the current preferences and needs of the consumer group.
To create an environment that enables participation and captures the consumer voice, the team is designing a flexible recruitment strategy with options to support people that may be experiencing fatigue, chemo brain and anxiety, that could otherwise make it harder to participate in research projects.
Consumer-led at each step of the study design, the team is taking the time needed to ensure there is meaningful collaboration on how to proceed through each stage of the research project. Most recently, this has been demonstrated through seeking feedback from a broader consumer group on the meaning of the survey questions. Checking the language used and its interpretation is directly relevant to the needs articulated by consumers.
Watch this space! – as recruitment to the research study is set for later this year. We can’t wait to check back in with the research team to find out how this exciting project is progressing.