Commission on Excellence and Innovation in Health

PRMs Research Grant update

08 May 2023

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.