‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research
Abstract Background Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, t...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-04-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13713 |
| _version_ | 1797871879478837248 |
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| author | Piotr Teodorowski Sarah E. Rodgers Kate Fleming Naheed Tahir Saiqa Ahmed Lucy Frith |
| author_facet | Piotr Teodorowski Sarah E. Rodgers Kate Fleming Naheed Tahir Saiqa Ahmed Lucy Frith |
| author_sort | Piotr Teodorowski |
| collection | DOAJ |
| description | Abstract Background Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective We explored how researchers involve and engage seldom‐heard communities around big data research. Methods This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. |
| first_indexed | 2024-04-10T00:50:01Z |
| format | Article |
| id | doaj.art-b2368766c1b044bfae8fe2d8dbea1c6b |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-04-10T00:50:01Z |
| publishDate | 2023-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-b2368766c1b044bfae8fe2d8dbea1c6b2023-03-13T12:33:24ZengWileyHealth Expectations1369-65131369-76252023-04-0126288289110.1111/hex.13713‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data researchPiotr Teodorowski0Sarah E. Rodgers1Kate Fleming2Naheed Tahir3Saiqa Ahmed4Lucy Frith5Department of Public Health, Policy & Systems University of Liverpool Liverpool UKDepartment of Public Health, Policy & Systems University of Liverpool Liverpool UKNational Disease Registration Service NHS Digital Liverpool UKARC NWC Public Advisor Liverpool UKARC NWC Public Advisor Liverpool UKDepartment of Law University of Manchester Manchester UKAbstract Background Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective We explored how researchers involve and engage seldom‐heard communities around big data research. Methods This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement Two public contributors are authors of the paper and they were involved in the study design, analysis and writing.https://doi.org/10.1111/hex.13713big dataPPIpublic engagementpublic involvementqualitativeseldom‐heard |
| spellingShingle | Piotr Teodorowski Sarah E. Rodgers Kate Fleming Naheed Tahir Saiqa Ahmed Lucy Frith ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research Health Expectations big data PPI public engagement public involvement qualitative seldom‐heard |
| title | ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research |
| title_full | ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research |
| title_fullStr | ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research |
| title_full_unstemmed | ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research |
| title_short | ‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research |
| title_sort | to me it s ones and zeros but in reality that one is death a qualitative study exploring researchers experience of involving and engaging seldom heard communities in big data research |
| topic | big data PPI public engagement public involvement qualitative seldom‐heard |
| url | https://doi.org/10.1111/hex.13713 |
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