Without the engagement, enthusiasm and infinite patience of our collaborators at the five study trusts, we would have found the research presented in this report impossible to complete. We thank the NHS staff and volunteers who approved their trust’s participation in the study, gave us their time, agreed to be interviewed, allowed us to shadow them in their work and observe meetings, introduced us to other colleagues and shared documents and ideas with us. We are also grateful to the NHS patients who agreed to talk to us about their experiences of providing feedback to hospital trusts.
We thank Dr Mary Adams, Research Fellow at King’s College London, for her contributions to the project in its early stages and for her initial fieldwork at one of the participating NHS trusts. We also thank Dr Alessia Costa, Research Associate at King’s College London, for observing and recording the proceedings of the cross-site JIF in London. Thanks to Christine Chapman, independent consultant and PPI advisor, for her involvement in the design stage and early phases of the study, and for contributing to shaping our successful funding application and guiding our PPI strategy.
Finally, we are grateful to the following members of the Advisory Group for their advice and support throughout the project:
Catherine Dale, Guy’s and St Thomas’ NHS Foundation Trust
Mairead Griffin, Guy’s and St Thomas’ NHS Foundation Trust
Nicky Hayes, King’s College Hospital NHS Foundation Trust
Annie Laverty, Northumbria Healthcare NHS Foundation Trust
David McNally, NHS England
Martine Price, Aneurin Bevan University Health Board
Janice Sigsworth, Imperial College Healthcare NHS Trust
John Sprange, PPI advisor
Sylvia Tang, Priory Group
Anna Torode, PPI advisor.
Contributions of authors
Sara Donetto (Lecturer, King’s College London) was the principal investigator, led the overall study design, co-ordinated the study team, conducted data collection and analysis at one study trust, contributed to overall data analysis, and led and contributed substantially to report writing.
Amit Desai (Research Fellow, King’s College London) conducted data collection and analysis at three study trusts, contributed to overall data analysis, contributed substantially to report writing and gave final approval of the manuscript.
Giulia Zoccatelli (Research Associate, King’s College London) conducted data collection and analysis at two study trusts, contributed to overall data analysis and report writing, and gave final approval of the manuscript.
Glenn Robert (Professor of Healthcare Quality and Innovation, King’s College London) contributed to the overall study design, contributed to data analysis and report writing, and gave final approval of the manuscript.
Davina Allen (Professor of Nursing, Cardiff University) contributed to the overall study design, data analysis and report writing, and gave final approval of the manuscript.
Sally Brearley (Independent PPI Advisor) contributed to the overall study design, data analysis and report writing, and gave final approval of the manuscript.
Anne Marie Rafferty (Professor of Nursing Policy, King’s College London) contributed to the overall study design, data analysis and report writing, and gave final approval of the manuscript.
Publication
Desai A, Zoccatelli G, Adams M, Allen D, Brearley S, Rafferty AM, et al. Taking data seriously: the value of actor–network theory in rethinking patient experience data. J Health Serv Res Policy 2017;22:134–6.
Data-sharing statement
All qualitative data generated that can be shared are contained within the report. All data queries and requests should be submitted to the corresponding author for consideration.
Disclaimers
This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care.
