Designing a tool to support patient and public involvement in research projects: the Involvement Matrix
Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involv...
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| Published in | Research involvement and engagement Vol. 6; no. 1; pp. 30 - 7 |
|---|---|
| Main Authors | , , , , |
| Format | Journal Article |
| Language | English |
| Published |
London
BioMed Central
16.06.2020
BioMed Central Ltd BMC |
| Subjects | |
| Online Access | Get full text |
| ISSN | 2056-7529 2056-7529 |
| DOI | 10.1186/s40900-020-00188-4 |
Cover
| Abstract | Background
Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects.
Methods
The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels.
Results
A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a ‘matrix’. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user’s guide.
Conclusion
The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. |
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| AbstractList | Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. Methods The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. Results A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a ‘matrix’. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user’s guide. Conclusion The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide. The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Abstract Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. Methods The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. Results A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a ‘matrix’. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user’s guide. Conclusion The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. Methods The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. Results A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a ‘matrix’. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user’s guide. Conclusion The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects.BACKGROUNDInterest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects.The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels.METHODSThe tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels.A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide.RESULTSA conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide.The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research.CONCLUSIONThe Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide. The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Background Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. Methods The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. Results A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide. Conclusion The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research. Keywords: Patient involvement, Research, Projects, Roles, Expectations |
| ArticleNumber | 30 |
| Audience | Academic |
| Author | Alsem, Mattijs Smits, Dirk-Wouter van Meeteren, Karen Ketelaar, Marjolijn Klem, Martijn |
| Author_xml | – sequence: 1 givenname: Dirk-Wouter surname: Smits fullname: Smits, Dirk-Wouter organization: Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, ‘Denker in Beweging’, Organization for Action Research Involving Parents and Children – sequence: 2 givenname: Karen surname: van Meeteren fullname: van Meeteren, Karen organization: Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, ‘OuderInzicht’, Parent Organization for Increasement of Parent Involvement in Research – sequence: 3 givenname: Martijn surname: Klem fullname: Klem, Martijn organization: BOSK, Association of People with congenital disabilities – sequence: 4 givenname: Mattijs surname: Alsem fullname: Alsem, Mattijs organization: Department of Rehabilitation Medicine, Amsterdam University Medical Centers, location AMC – sequence: 5 givenname: Marjolijn surname: Ketelaar fullname: Ketelaar, Marjolijn email: m.ketelaar@dehoogstraat.nl, m.ketelaar-2@umcutrecht.nl organization: Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/32550002$$D View this record in MEDLINE/PubMed |
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| ContentType | Journal Article |
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Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’... Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients'... Background Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for'... Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’... Abstract Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’... |
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| SubjectTerms | Collaboration Decision making Design Empowerment Expectations Medical research Medicine Medicine & Public Health Methodology Patient involvement Patients Power Projects Researchers Roles |
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| Title | Designing a tool to support patient and public involvement in research projects: the Involvement Matrix |
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