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Understanding and Using Health ExperiencesImproving patient care$
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Sue Ziebland, Angela Coulter, Joseph D. Calabrese, and Louise Locock

Print publication date: 2013

Print ISBN-13: 9780199665372

Published to Oxford Scholarship Online: May 2013

DOI: 10.1093/acprof:oso/9780199665372.001.0001

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Engagement and inclusivity in researching patients’ experiences

Engagement and inclusivity in researching patients’ experiences

(p.127) Chapter 13 Engagement and inclusivity in researching patients’ experiences
Understanding and Using Health Experiences

Sara Ryan

Oxford University Press

Challenges to inclusive research, often created by the assumptions and practises of researchers, funders, ethics committees, health and policymakers and academia, have lead to a tendency for some groups, such as people with learning difficulties, sex workers, illicit drug users, or traveller populations, to only be included in research focusing on that particular group. After a critical assessment of what constitutes a ‘seldom heard’, or ‘socially excluded’ group, I present the key dimensions to facilitating inclusive research summarised as assumptions, access, time and resources and flexible research methods. Methodological and substantive questions are raised about the expected shape and form that 'patient experience' research can take, and how this may fit into accepted standards of robust research.

Keywords:   inclusion, seldom heard groups, engagement, hard to reach, research methods

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