Patients' advocates and counselors: Perceived needs in education and training

Abstract

Objective: Since there is a lack of knowledge on the occupational needs of patient representatives (PRs) and counselors (PCs), we performed a study eliciting perceived skills and informational needs in evidence-based medicine (EbM) and health economics (HE) and investigated preferences for training.

Methods: Semi-structured interviews and an online survey were conducted among PRs and PCs in Germany. Questions covered perceived skills and informational needs in EbM and HE and preferences for training in both fields. Interview data was analyzed using the grounded theory method. Survey results were analyzed by means of descriptive statistics.

Results: Nine personal interviews, one group discussion and 50 survey forms were analyzed. Respondents reported better skills in EbM compared to HE but felt a need for training in both fields. Important barriers mentioned were difficulties in reading scientific articles written in English and understanding statistics. Preferences for training included regionally widespread offers, availability of refresher classes, and a mixture of presence-based and online courses.

Conclusion: PRs and PCs perceive a considerable need for formal training in EbM and HE and have clear expectations of the format and design.

Practice implication: Trainings in EbM and HE could help to enhance patient and public involvement (PPI) in Germany.

Keywords: Education; Evidence-based medicine; Health literacy; Patient advocates; Patient counselor; Patient representative; Training.