Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers
Background Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. Objective By bringing together researchers and p...
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| Published in | Health expectations : an international journal of public participation in health care and health policy Vol. 22; no. 3; pp. 496 - 503 |
|---|---|
| Main Authors | , , |
| Format | Journal Article |
| Language | English |
| Published |
England
John Wiley & Sons, Inc
01.06.2019
John Wiley and Sons Inc Wiley |
| Subjects | |
| Online Access | Get full text |
| ISSN | 1369-6513 1369-7625 1369-7625 |
| DOI | 10.1111/hex.12875 |
Cover
| Abstract | Background
Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.
Objective
By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.
Design
We apply a qualitative design using positioning theory as a theoretical framework.
Setting and participants
Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.
Findings
The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.
Discussion and conclusion
Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. |
|---|---|
| AbstractList | Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.
By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.
We apply a qualitative design using positioning theory as a theoretical framework.
Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.
The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.
Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. Background Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. Objective By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. Design We apply a qualitative design using positioning theory as a theoretical framework. Setting and participants Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. Findings The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. Discussion and conclusion Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. Background: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. Objective: By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. Design: We apply a qualitative design using positioning theory as a theoretical framework. Setting and participants: Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. Findings: The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. Discussion and conclusion: Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. Abstract Background Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. Objective By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. Design We apply a qualitative design using positioning theory as a theoretical framework. Setting and participants Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. Findings The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. Discussion and conclusion Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. BackgroundInterest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.ObjectiveBy bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.DesignWe apply a qualitative design using positioning theory as a theoretical framework.Setting and participantsResearchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.FindingsThe discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.Discussion and conclusionOur study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. We apply a qualitative design using positioning theory as a theoretical framework. The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.BACKGROUNDInterest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective.By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.OBJECTIVEBy bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group.We apply a qualitative design using positioning theory as a theoretical framework.DESIGNWe apply a qualitative design using positioning theory as a theoretical framework.Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.SETTING AND PARTICIPANTSResearchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis.The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.FINDINGSThe discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs.Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.DISCUSSION AND CONCLUSIONOur study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research. |
| Audience | Academic |
| Author | Foss, Christina Knutsen, Ingrid Ruud Stuhlfauth, Susanne |
| AuthorAffiliation | 1 Department of Nursing Science, Faculty of Medicine University of Oslo Oslo Norway 2 Department of Nursing and Health Promotion Faculty of Health Science, Oslo Metropolitan University Kjeller Norway |
| AuthorAffiliation_xml | – name: 2 Department of Nursing and Health Promotion Faculty of Health Science, Oslo Metropolitan University Kjeller Norway – name: 1 Department of Nursing Science, Faculty of Medicine University of Oslo Oslo Norway |
| Author_xml | – sequence: 1 givenname: Susanne orcidid: 0000-0001-7469-586X surname: Stuhlfauth fullname: Stuhlfauth, Susanne email: susanne.stuhlfauth@medisin.uio.no organization: University of Oslo – sequence: 2 givenname: Ingrid Ruud surname: Knutsen fullname: Knutsen, Ingrid Ruud organization: Faculty of Health Science, Oslo Metropolitan University – sequence: 3 givenname: Christina surname: Foss fullname: Foss, Christina organization: University of Oslo |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/30779324$$D View this record in MEDLINE/PubMed |
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| Copyright | 2019 The Authors published by John Wiley & Sons Ltd 2019 The Authors Health Expectations published by John Wiley & Sons Ltd. COPYRIGHT 2019 John Wiley & Sons, Inc. 2019. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. info:eu-repo/semantics/openAccess |
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Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the... Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration... Background: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the... BackgroundInterest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the... Abstract Background Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in... |
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| Title | Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers |
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