Working collaboratively to undertake consumer-led research in patient reported measures

The con­sumer-led research project, ​‘Min­imis­ing the bur­den of haematopoi­et­ic stem cell trans­plant through PRMs’, fund­ed by The CEIH, 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.