Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research
Abstract Background Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent. These two sides of the same coin do not mask the considerable gap that...
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| Format: | Article |
| Language: | English |
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BMC
2023-09-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-023-00498-3 |
| _version_ | 1797555791611297792 |
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| author | Hildert Bronkhorst Wytske M. van Weerden Eline M. Bunnik Hub Zwart |
| author_facet | Hildert Bronkhorst Wytske M. van Weerden Eline M. Bunnik Hub Zwart |
| author_sort | Hildert Bronkhorst |
| collection | DOAJ |
| description | Abstract Background Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent. These two sides of the same coin do not mask the considerable gap that exists between the laboratory world of scientists and the life world of patients. Funding agencies nowadays increasingly demand researchers to be responsive to the values and priorities of patients and public. One approach to bridge this gap and to increase the impact of science is patient and public involvement (PPI). A concise literature review of PPI research and practice in this paper revealed that although PPI is often deployed in translational health care research, its methodology is not settled, it is not sufficiently emancipatory, and its implementation in basic and translational science is lagging behind. Here, we illustrate the practical implementation of PPI in basic and translational science, namely in the context of HOUDINI, a multidisciplinary network with the ultimate goal to improve the management of metastatic disease. Methods This paper reports on a societal workshop that was organized to launch the holistic PPI approach of HOUDINI. During this workshop, societal partners, patients, and physicians discussed societal issues regarding cancer metastasis, and contributed to prioritization of research objectives for HOUDINI. In a later stage, the workshop results were discussed with scientists from the network to critically review its research strategy and objectives. Results Workshop participants chose the development of metastasis prediction tools, effective therapies which preserve good quality of life, and non-invasive tissue sampling methods as most important research objectives for HOUDINI. Importantly, during the discussions, mutual understanding about issues like economic feasibility of novel therapies, patient anxiety for metastases, and clear communication between stakeholders was further increased. Conclusions In conclusion, the PPI workshop delivered valuable early-stage input and connections for HOUDINI, and may serve as example for similar basic and translational research projects. |
| first_indexed | 2024-03-10T16:52:43Z |
| format | Article |
| id | doaj.art-282ebb30e13e427180aacd59a03c68a1 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-10T16:52:43Z |
| publishDate | 2023-09-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-282ebb30e13e427180aacd59a03c68a12023-11-20T11:15:16ZengBMCResearch Involvement and Engagement2056-75292023-09-019111310.1186/s40900-023-00498-3Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis researchHildert Bronkhorst0Wytske M. van Weerden1Eline M. Bunnik2Hub Zwart3Erasmus School of Philosophy, Erasmus University Rotterdam (EUR)Department of Experimental Oncology, Erasmus Medical Centre (Erasmus MC)Department of Medical Ethics, Philosophy and History of Medicine, Erasmus Medical Centre (Erasmus MC)Erasmus School of Philosophy, Erasmus University Rotterdam (EUR)Abstract Background Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent. These two sides of the same coin do not mask the considerable gap that exists between the laboratory world of scientists and the life world of patients. Funding agencies nowadays increasingly demand researchers to be responsive to the values and priorities of patients and public. One approach to bridge this gap and to increase the impact of science is patient and public involvement (PPI). A concise literature review of PPI research and practice in this paper revealed that although PPI is often deployed in translational health care research, its methodology is not settled, it is not sufficiently emancipatory, and its implementation in basic and translational science is lagging behind. Here, we illustrate the practical implementation of PPI in basic and translational science, namely in the context of HOUDINI, a multidisciplinary network with the ultimate goal to improve the management of metastatic disease. Methods This paper reports on a societal workshop that was organized to launch the holistic PPI approach of HOUDINI. During this workshop, societal partners, patients, and physicians discussed societal issues regarding cancer metastasis, and contributed to prioritization of research objectives for HOUDINI. In a later stage, the workshop results were discussed with scientists from the network to critically review its research strategy and objectives. Results Workshop participants chose the development of metastasis prediction tools, effective therapies which preserve good quality of life, and non-invasive tissue sampling methods as most important research objectives for HOUDINI. Importantly, during the discussions, mutual understanding about issues like economic feasibility of novel therapies, patient anxiety for metastases, and clear communication between stakeholders was further increased. Conclusions In conclusion, the PPI workshop delivered valuable early-stage input and connections for HOUDINI, and may serve as example for similar basic and translational research projects.https://doi.org/10.1186/s40900-023-00498-3Cancer metastasisPatient and public involvementScientific and existential life worldSocietal workshopHolistic |
| spellingShingle | Hildert Bronkhorst Wytske M. van Weerden Eline M. Bunnik Hub Zwart Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research Research Involvement and Engagement Cancer metastasis Patient and public involvement Scientific and existential life world Societal workshop Holistic |
| title | Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research |
| title_full | Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research |
| title_fullStr | Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research |
| title_full_unstemmed | Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research |
| title_short | Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research |
| title_sort | awe and anxiety for cancer cells connecting scientists and patients in a holistic approach of metastasis research |
| topic | Cancer metastasis Patient and public involvement Scientific and existential life world Societal workshop Holistic |
| url | https://doi.org/10.1186/s40900-023-00498-3 |
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