Hereditary renal cancer patient and public involvement group: A collaborative, consensus decision process to develop a communication tool for patient use

Author:

Colvin EllenORCID,Ng Stephanie,Hepworth John,Hepworth Janice,Hartley Thomas,Godfrey Nicola,Tricker Karen,Rothwell Jeanette,Beaman Glenda,Woodward Emma R.

Abstract

Abstract Patient and public involvement (PPI) must be more frequently embedded within clinical research to ensure translational outcomes are patient-led and meet patient needs. Active partnerships with patients and public groups are an important opportunity to hear patient voices, understand patient needs, and inform future research avenues. A hereditary renal cancer (HRC) PPI group was developed with the efforts of patient participants (n = 9), pooled from recruits within the early detection for HRC pilot study, working in collaboration with researchers and healthcare professionals (n = 8). Patient participants had HRC conditions including Von Hippel–Lindau (n = 3) and Hereditary Leiomyomatosis and Renal Cell Carcinoma (n = 5), and public participants included two patient Trustees (n = 2) from VHL UK & Ireland Charity. Discussions among the enthusiastic participants guided the development of a novel patient information sheet for HRC patients. This communication tool was designed to aid patients when informing family members about their diagnoses and the wider implications for relatives, a gap identified by participants within group discussions. While this partnership was tailored for a specific HRC patient and public group, the process implemented can be employed for other hereditary cancer groups and could be transferable within other healthcare settings.

Publisher

Cambridge University Press (CUP)

Subject

General Medicine

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