Patients as Collaborative Partners in Clinical Research to Inform HTA

Abstract

This chapter introduces the concept of patient research partners (PRPs) in clinical research and presents recommendations to support PRPs that have been developed in the field of rheumatology. PRPs are encouraged to participate throughout the research process because their experiential knowledge is valued. For this collaboration to be fruitful, all participants in the research process should agree to principles of trust, respect, transparency, partnerships, communication, diversity, confidentiality and co-learning to support patient involvement in research. On this basis, recommendations are presented that relate to the role, research phases, number, recruitment, selection, support, training, acknowledgement and reporting of PRPs. This provides guidance that can help researchers and PRPs in a variety of clinical research settings such as grant assessment, agenda setting, designing and conducting a clinical study of a health technology, development of a disease-specific core outcome set including endpoints relevant to patients, patient-reported outcome measures and dissemination of findings, all of which are highly relevant to HTA processes.