Involving patients in a multidisciplinary European consensus process and in the development of a 'patient summary of the consensus document for colon and rectal cancer care'

Petra G Boelens; Claire Taylor; Geoffrey Henning; Perla J Marang-van de Mheen; Eloy Espin; Theo Wiggers; Jola Gore-Booth; Barbara Moss; Vincenzo Valentini; Cornelis J H van de Velde

doi:10.1007/s40271-014-0061-4

Involving patients in a multidisciplinary European consensus process and in the development of a 'patient summary of the consensus document for colon and rectal cancer care'

Patient. 2014;7(3):261-70. doi: 10.1007/s40271-014-0061-4.

Authors

Petra G Boelens¹, Claire Taylor, Geoffrey Henning, Perla J Marang-van de Mheen, Eloy Espin, Theo Wiggers, Jola Gore-Booth, Barbara Moss, Vincenzo Valentini, Cornelis J H van de Velde

Affiliation

¹ Department of Surgery, Leiden University Medical Center, Albinusdreef 2, PO Box 9600, 2300 RC, Leiden, The Netherlands, drboelens@hotmail.com.

PMID: 24862378
DOI: 10.1007/s40271-014-0061-4

Abstract

Context: High-quality cancer care should be accessible for patients and healthcare professionals. Involvement of patients as partners in guideline formation and consensus processes is still rarely found. EURECCA, short for European Registration of Cancer Care, is the platform to improve outcomes of cancer care by reducing variation in the diagnostic and treatment process. EURECCA acknowledges the important role of patients in implementation of consensus information in clinical practice.

Objective: The aim of this article is to describe the process of involving patients in the consensus process and in developing the patient summary of the consensus for colon and rectal cancer care.

Methods: The Delphi method for achieving consensus was used. Three online voting rounds and one tele-voting round were offered to an expert panel of oncology professionals and patient representatives. At four different stages, patients and/or patient representatives were involved in the process: (1) during the consensus process, (2) lecturing about the role of the patient, (3) development of the patient summary, and (4) testing the patient summary.

Results: Representatives were invited to the voting and commenting rounds of this process and given an equal vote. Although patients were not consulted during the planning stages of this process, patient involvement increased following the panel's discussion of the implementation of the consensus among the patient population. After the consensus meeting, the patient summary was written by patient representatives, oncologists and nurses. A selection of proactive patients reviewed the draft patient summary; responses were positive and several patient-reported outcomes were added. Questionnaires to evaluate the use and implementation of the patient summary in daily practice are currently being developed and tested. Patient consultation will be needed in future planning for selection of topics.

Discussion: The present study may function as a model for future consensus processes to involve patients at different stages and to implement both patient and healthcare professional versions in daily practice.

MeSH terms

Colorectal Neoplasms / therapy*
Decision Making*
Delphi Technique
Europe
Outcome and Process Assessment, Health Care / organization & administration
Patient Participation / methods*
Practice Guidelines as Topic
Quality of Health Care / organization & administration