We are pleased to report on the progress of the consumer-led research project, ‘Minimising the burden of haematopoietic stem cell transplant through Patient Reported Measures (PRMs)’. Funded by the CEIH, this project supports and promotes consumer-led research in patient reported measures. The project aims to delve more deeply and understand the unexpressed needs of cancer survivorship, to better identify and support the care needs of people post stem cell transplant.
The consumer co-leads for the project, Andrew Knox and Graham Lewis, have been busy working alongside Nicole Loft (Nurse Practitioner and co-lead) and Hannah Wardill (Researcher and co-lead) and the extended project team. Consumer-led at each step, early design work has included 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. This has enabled participation through flexible options to support people that may be experiencing fatigue, chemo brain and anxiety. We are pleased to report that 76 participants accepted an invitation to participate in the research, demonstrating the passion and commitment of everyone involved in the project. There was an excellent response to the initial survey, where many participants openly shared their experiences, challenges and perspectives, and which provided valuable insights.
The research team recently hosted participants at a forum in early May 2023. In a supportive environment, the team worked with participants to begin identifying priorities and preferences for how to effectively capture information.
The project is a step closer to realising the greater vision of having Patient Reported Outcome Measures (PROMs) routinely implemented in survivorship cancer care pathways and provide the evidence needed to truly implement a patient-centric care service.
For more information and our previous update about the grant, see PRMs Research Grant update.