Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions
Abstract Background There has been an increasing interest in the use of “real-world” data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic h...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-01-01
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| Series: | BMC Public Health |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12889-023-15035-w |
| _version_ | 1797945669241012224 |
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| author | Susan Baxter Matthew Franklin Annette Haywood Tony Stone Monica Jones Suzanne Mason Kamil Sterniczuk |
| author_facet | Susan Baxter Matthew Franklin Annette Haywood Tony Stone Monica Jones Suzanne Mason Kamil Sterniczuk |
| author_sort | Susan Baxter |
| collection | DOAJ |
| description | Abstract Background There has been an increasing interest in the use of “real-world” data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. Methods We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. Results Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. Conclusion The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles. |
| first_indexed | 2024-04-10T20:58:44Z |
| format | Article |
| id | doaj.art-539c13805c86400893f8e1b1d6a75e1d |
| institution | Directory Open Access Journal |
| issn | 1471-2458 |
| language | English |
| last_indexed | 2024-04-10T20:58:44Z |
| publishDate | 2023-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Public Health |
| spelling | doaj.art-539c13805c86400893f8e1b1d6a75e1d2023-01-22T12:27:37ZengBMCBMC Public Health1471-24582023-01-0123111210.1186/s12889-023-15035-wSharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptionsSusan Baxter0Matthew Franklin1Annette Haywood2Tony Stone3Monica Jones4Suzanne Mason5Kamil Sterniczuk6School of Health and Related Research (ScHARR), University of SheffieldSchool of Health and Related Research (ScHARR), University of SheffieldSchool of Health and Related Research (ScHARR), University of SheffieldSchool of Health and Related Research (ScHARR), University of SheffieldProfessional Services, University of LeedsSchool of Health and Related Research (ScHARR), University of SheffieldPublic advisorAbstract Background There has been an increasing interest in the use of “real-world” data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. Methods We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. Results Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. Conclusion The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles.https://doi.org/10.1186/s12889-023-15035-wData sharingReal world dataPublic healthRoutine dataInformation governanceIntegrated care |
| spellingShingle | Susan Baxter Matthew Franklin Annette Haywood Tony Stone Monica Jones Suzanne Mason Kamil Sterniczuk Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions BMC Public Health Data sharing Real world data Public health Routine data Information governance Integrated care |
| title | Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions |
| title_full | Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions |
| title_fullStr | Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions |
| title_full_unstemmed | Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions |
| title_short | Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions |
| title_sort | sharing real world data for public benefit a qualitative exploration of stakeholder views and perceptions |
| topic | Data sharing Real world data Public health Routine data Information governance Integrated care |
| url | https://doi.org/10.1186/s12889-023-15035-w |
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