A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research
Abstract Background Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership resea...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-08-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13790 |
| _version_ | 1827761626879623168 |
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| author | Carolina Wannheden Sara Riggare Jamie L. Luckhaus Hanna Jansson My Sjunnestrand Terese Stenfors Carl Savage Maria Reinius Henna Hasson |
| author_facet | Carolina Wannheden Sara Riggare Jamie L. Luckhaus Hanna Jansson My Sjunnestrand Terese Stenfors Carl Savage Maria Reinius Henna Hasson |
| author_sort | Carolina Wannheden |
| collection | DOAJ |
| description | Abstract Background Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. |
| first_indexed | 2024-03-11T10:15:37Z |
| format | Article |
| id | doaj.art-4634790aa1694715b69357e0e8e36dbe |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-03-11T10:15:37Z |
| publishDate | 2023-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-4634790aa1694715b69357e0e8e36dbe2023-11-16T08:25:36ZengWileyHealth Expectations1369-65131369-76252023-08-012641757176710.1111/hex.13790A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating researchCarolina Wannheden0Sara Riggare1Jamie L. Luckhaus2Hanna Jansson3My Sjunnestrand4Terese Stenfors5Carl Savage6Maria Reinius7Henna Hasson8Department of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Women's and Children's Health, Participatory eHealth and Health Data Uppsala University Uppsala SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Division of Learning, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenDepartment of Learning, Informatics, Management and Ethics Medical Management Centre, Karolinska Institutet Stockholm SwedenAbstract Background Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.https://doi.org/10.1111/hex.13790cocreationcoproductionpartnership researchpatient and public involvementpatient authorpatient‐driven innovation |
| spellingShingle | Carolina Wannheden Sara Riggare Jamie L. Luckhaus Hanna Jansson My Sjunnestrand Terese Stenfors Carl Savage Maria Reinius Henna Hasson A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research Health Expectations cocreation coproduction partnership research patient and public involvement patient author patient‐driven innovation |
| title | A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research |
| title_full | A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research |
| title_fullStr | A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research |
| title_full_unstemmed | A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research |
| title_short | A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research |
| title_sort | rocky road but worth the drive a longitudinal qualitative study of patient innovators and researchers cocreating research |
| topic | cocreation coproduction partnership research patient and public involvement patient author patient‐driven innovation |
| url | https://doi.org/10.1111/hex.13790 |
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