Patients' involvement in improving cancer care: experiences in three years of collaboration between members of patient associations and health care professionals

Patient Education and Counseling
Christina CarlssonKerstin Nilsson

Abstract

The aim of this study was to explore how members of patient associations (PACPs) and health care professionals (HCPs) experience collaboration in a network initiated by the health care system and aimed at improving cancer care. The participants were asked to describe, after 1 and 3 years, their experiences of collaboration. Data collected were in the form of a written answer to a single, open-ended question, and the answers were analysed using inductive content analysis. The analysis revealed four themes: the impact of processes that occur within the network, the impact of learning, the impact of innovation and development in cancer care, and the impact of PACP members' personal cancer experience. Statements about the impact of the processes that occur within the network dominated at both occasions. This study of experiences of collaboration provides new data on the importance ascribed to such efforts between patients in an organised association and HCPs. We suggest that differences in perceptions and expectations should be taken into account in future collaborations between representatives of patient associations and of health care systems in order to reach out and to influence developments in cancer care.

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Citations

Apr 11, 2014·Iranian Red Crescent Medical Journal·Shaghayegh VahdatZeinab Hamzehgardeshi
May 13, 2014·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Elena PizzoJames Barlow
Sep 16, 2008·Patient Education and Counseling·Liz ForbatNora Kearney
Nov 26, 2015·International Journal of Nursing Studies·Hannah Snyder, Jon Engström
Feb 8, 2018·Leadership in Health Services·Kerstin NilssonMette Sandoff
Oct 30, 2020·Journal of Multidisciplinary Healthcare·Lindy L Turnbull, Susan M Carr
Aug 5, 2021·Patient Education and Counseling·Jaime O Herrera-CaceresMichael A S Jewett

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