Freedom Of Information Research Articles

The Perils of Partnership: Interactions Between Public Health England, Drinkaware, and the Portman Group Surrounding the Drink Free Days Campaign.

There is growing evidence that the alcohol industry seeks to obstruct public health policies that might affect future alcohol sales. In parallel, the alcohol industry funds organisations that engage in "responsible drinking" campaigns. Evidence is growing that the content and delivery of such campaigns serves industry, rather than public health interests, yet these organizations continue to be the subject of partnerships with government health departments. This study aimed to examine the nature and potential impacts of such partnerships by analysing the practices of the alcohol industry-funded charity Drinkaware during the establishment of the Drink Free Days campaign. A case study based on an inductive analysis of documents revealed by freedom of information (FoI) request regarding communications between Drinkaware, Public Health England (PHE), and the Portman Group, in the years running up to, and during, the Drink Free Days campaign, a partnership between alcohol industry-funded charity Drinkware, and PHE. This study reveals a range of less visible, system-level effects of such partnerships for government departments and civil society. The tensions observed, as exhibited by discrepancies between internal and external communications, the emphasis on managing and mitigating the perception of negative consequences, and the links to wider alcohol industry initiatives and bodies, suggest the need for wider considerations of organizational conflicts of interest, and of possible indirect, harmful consequences to policy-making. These include the marginalization of other civil society voices, the displacing of more effective policy options, and strategic alignment with other industry lobbying activities. The findings have implications for how public health practitioners and health organisations might better weigh the potential trade-offs of partnership in the context of health promotion campaigns.

Censoring Our History

Abstract Andrew Lownie recounts how he became the victim of state surveillance as a result of his successful efforts to secure the release of the personal diaries and letters of Dickie and Edwina Mountbatten – bought by the University of Southampton with public funds to be open to researchers – in what became the largest-ever release of material under Freedom of Information (FOI), 33,000 pages, but which personally cost him over £400,000 in legal fees. Drawing on his own research experiences, he also describes the failure of government departments to deposit records at the National Archives as required by statute, the techniques public authorities use to frustrate FOI requests and suggests how FOI could be improved. All of this curation, he argues, leads to a distortion of the historical record and the censoring of our history.

Provision of interpreting support for cross-cultural communication in UK maternity services: A Freedom of Information request

BackgroundLanguage, communication and understanding of information are central to safe, ethical and efficient maternity care. The National Health Service (NHS) commissioning board, NHS England, describes how healthcare providers should obtain language support through professionally trained interpreters. Providers of interpreters are commissioned to deliver remote/face to face interpretation across the NHS. Services can be booked in advance or calls can be made in real time. However, women report infrequent use of professionally trained interpreters during their maternity care, often relying on friends and family as interpreters which can compromise confidentiality, disclosure and accuracy. MethodsTo determine the demand for, and provision of, professionally trained interpreters in practice, we sent a Freedom of Information (FOI) request to 119 NHS Trusts delivering maternity services in England in November 2022. For the financial years 2020/2021 and 2021/2022, we asked how many women in the maternity service were identified as needing an interpreter, the number and mode of interpreter sessions, and the annual spend on interpreting services. Data were analysed using descriptive statistics. ResultsOne hundred maternity Trusts responded by 21st April 2023 (response rate 100/119–84 %). Of these, 56 (56 %) recorded a woman's need for an interpreter. Nineteen Trusts relied on documentation in paper notes and 37 Trusts recorded the information on a digital system. From the 37 Trusts where this information could be digitally retrieved, women requiring interpreter support reflected between 1 and 25 % of the annual birth rate of the Trust (average 9 %) and received an average of three interpreter sessions across their pregnancy, birth and postnatal journey. Telephone was the dominant mode used for interpreting sessions, though 11 Trusts favoured face to face interpreting. Financial spend on interpreting services varied across Trusts; some funded their own in-house interpreting services, or worked with local community groups in addition to their contracted interpreting provider. ConclusionInformation obtained from this FOI request suggests that documentation of a woman's interpreting need is not complete or consistent across NHS maternity services. As a result, it is not clear how many women require an interpreter, the mode of provision or how frequently it is provided, and the cost involved. However, the limited information available suggests a failure to provide interpreter support to women at each scheduled care encounter. This raises questions about, the risk of women not understanding the care being offered, and the increased risk of uninformed, unconsented care as women traverse pregnancy and birth. TweetableThere appears to be failure to provide interpreter support to women at each scheduled maternity care encounter increasing the risk of uninformed, unconsented care.

899 serious adverse events including 13 deaths, 7 strokes, 211 thromboembolic events, and 482 immune reactions: The untold story of cyanoacrylate adhesive closure.

The aim was to retrieve and analyse the serious adverse events of venous occlusion systems used in cyanoacrylate adhesive closure (CAC) submitted to regulatory agencies. The Total Product Life Cycle (TPLC) database of the US Food and Drug Administration (FDA), the Database of Adverse Event Notifications (DAEN) of the Australian Therapeutic Goods Administration (TGA), and the Yellow Card database of the UK Medicines and Healthcare Products Regulatory Agency (MHRA) were reviewed. Three Freedom of Information (FOI) requests had to be submitted to the MHRA to obtain data. The TPLC contained 899 reports which included 13 cases of death, 7 strokes, 211 thromboembolic events, and 482 immune reactions. The DAEN recorded three reportable adverse events, and the MHRA recorded seven adverse incidents including one death. CAC is associated with serious adverse events including death. These events are under-reported in the medical literature and only sub-optimally reported to the regulatory agencies.

Evaluation of the current use of MRI to aid the diagnosis of axial spondyloarthritis in the UK: results from a freedom of information request

To evaluate the impact of recommendations from the 2019 consensus exercise conducted by radiologists and rheumatologists on the use of magnetic resonance imaging (MRI) to investigate axial spondyloarthritis (axSpA) in clinical practice. A freedom of information (FOI) request was used to assess the use of MRI in the diagnosis of axSpA and radiologists' awareness of the 2019 guidance across all NHS Trusts and Health Boards in the UK, including England, Scotland, Northern Ireland, and Wales. The FOI request was sent to 150 Trusts/Health Boards, and 93 full responses were received. Of the 93 respondents (97%), 90 reported familiarity with the term axSpA and 70/93 (75%) reported familiarity with the 2019 recommendations. Awareness of recommendations regarding specific MRI features supportive of the diagnosis of axSpA was 74/93 (80%) for the sacroiliac joints (SIJs) and 66/93 (71%) for the spine. The median wait for MRI acquisition was 2-3 months. Fifty-two of the 93 (56%) reported at least some outsourcing of axSpA MRI (33%/29% for specialist/non-specialist outsourcing respectively); 32/93 (34%) reported some scans being reported in-house by non-musculoskeletal radiologists. There have been several positive developments in the understanding and use of MRI for the diagnosis of axSpA in the UK since the 2017 survey, although substantial scope for further improvement remains. Several new challenges have also emerged, including the increase in waiting times, reliance on outsourcing, and the reporting of MRI by non-musculoskeletal radiologists.

Quantitative content analysis of Freedom of Information requests examining the extent and variations of tools and training for conducting suicide risk assessments in NHS Trusts across England

ObjectivesDetermining the risk for suicide is a difficult endeavour. Clinical guidance in the UK explicitly advises against using risk assessment tools and scales to determine suicide risk. Based on Freedom...

A CONSTITUTIONAL RIGHT OF ACCESS TO INFORMATION IN MALAYSIA?

At the time of writing, for all intents and purposes, Malaysia does not expressly and incontrovertibly acknowledge the right of access to information. This article seeks to argue that Malaysia should recognise such a right. This article explores how such a right would be consistent with international human rights standards, regional human rights standards, Malaysia’s Cabinet policy decision on 11th July 2018, and the Federal Government’s current freedom of information practices. This article also examines how the Judiciary has in the past indicated its openness to the existence and/or applicability of such a right within Malaysian jurisprudence. This article lastly looks into how the right of access to information can become a constitutional right in Malaysia by way of judicial recognition and/or constitutional amendment.

517 Ethnic Diversity in the English Urology Workforce and BAUS Leadership 2009-2020: A Retrospective Analysis

Abstract Aim Little is known about the ethnic composition of the national urology workforce. To assess the impact of existing strategies to promote equitable progression, with respect to ethnicity, in the English urology workforce and British Association of Urological Surgeons (BAUS) leadership between 2009 and 2020. Method A Freedom of Information (FOI) Act request was made to NHS Digital regarding demographic data of clinicians working in urology in England between 2009 and 2020. Data was collected on urology consultants, specialist registrars, specialty, and associate specialist (SAS) doctors over this period. The ethnicities of British Association of Urological Surgeons (BAUS) Trustees and Council Members were determined over the same period, by review of public profiles. Statistical analysis was performed using the Cochran-Armitage test. Results The proportion of consultant urologists identified as White decreased from 65.5% to 53.6%, p<.0001), while the proportion of Asian/Asian British consultants increased (26.9% to 36.6%, p<.0001). There was a significant increase in Black/Black British trainees (3.0% to 11.0%, p<0.0001) but a decrease in the proportion of Asian/Asian British trainees. There was a non-significant decrease in the proportion of White urologists occupying BAUS leadership positions (80.6% to 67.6%, p = 0.5). Conclusions Trends towards increased ethnic diversity was seen across all groups, especially consultants. More limited change was observed in the urology leadership, suggesting both a time lag and that there is further work to be done in addressing barriers to progression in the highest echelons of urology leadership in the UK.

Exploration of the representation of the allied health professions in senior leadership positions in the UK National Health Service

BackgroundAllied health professionals (AHPs) are an important group within the National Health Service (NHS) in the UK and make up a large portion of the workforce. Investment in AHP leadership...

Let the people know, and the country will be safe: FOI models in South Africa and Zimbabwe

PurposeDemocratic countries all over the world are embarking on initiatives to empower citizens through public participation. One of the tools used by countries to promote public participation is the enactment and implementation of freedom of information (FOI) legislation, as it is the case with South Africa and Zimbabwe. Despite having legislation reaffirming the need for people’s right to know, practices in South Africa and Zimbabwe indicate the opposite. The purpose of this study is to explore FOI models in South Africa and Zimbabwe, with a view to recommend ways in which people’s right to know can be promoted.Design/methodology/approachThis qualitative study used interviews to collect the data from 12 FOI experts in South Africa and Zimbabwe, who were selected through the snowball sampling technique. Data collected through interviews were supplemented by the data collected through document analysis.FindingsThe study concluded that the key role players need to make efforts to ensure that the right to know, which is associated with FOI, is being realised in both countries. FOI legislation, in both countries, is imprecise and needs to be revised to ensure effective implementation.Originality/valueThe study demonstrates that FOI is a necessary tool for people to be involved in decision-making in government. People’s rights to know can be achieved by successfully implementing FOI legislation.

Reflecting on the use of freedom of information requests in mental health research

Freedom of information (FoI) legislation has been represented as a valuable but underused means of generating otherwise unavailable data from public authorities in health and social care research. This article complements extant literature on the use of FoI requests for research intended to inform health and social care policy and improve the quality of practice. Reflections are provided on challenges and ethical considerations, drawing on relevant literature and the authors’ experience undertaking studies addressing different topics in mental health and child welfare using FoI requests as the primary source of data collection. The recommendations are practically orientated and aimed primarily at social work and health and social care researchers who may have limited knowledge of how FoI requests might be utilised in their work but be curious about this method’s application.

Ethnicity, hypermobility syndrome and Ehlers-Danlos syndrome: A study based on hospital admissions

The purpose of the study was to identify any evidence of different patterns of disease for Ehlers Danlos Syndrome (EDS) and Hypermobility Syndrome (JHS) in the White British and South Asian communities in England. The numbers of hospital in-patients in ten NHS Trusts, between 2016 and 2020, in whom a diagnosis of EDS or JHS had been recorded were identified through Freedom of Information (FOI) requests. The condition was either the primary diagnosis or a secondary one, incidental to the reason for admission. The ten Trusts were selected because they served areas with a significant South Asian population and had been involved in previous studies of discrimination in the delivery of care. The study also assessed whether there was evidence of any of the Trusts underserving their South Asian community with lesser levels of recognition of EDS and JHS. Overall South Asian patients were almost four times more likely to have been diagnosed as having JHS. This proportion was statistically significant (z = -11.69, p <0.00001). In Burton and Derby, Cambridge and Leicester the proportion of South Asian patients diagnosed as having EDS was significantly lower than in other Trusts (z = 9.4, p <0.00001). This was also the case for JHS (z = 8.09, p < 0.00001). This would indicate that in these three Trusts both conditions are underdiagnosed in the South Asian community. The significance of these findings is discussed.

Ethnic diversity in the English urology workforce and BAUS leadership 2009–2020: A longitudinal study

Objectives: To assess the impact of existing strategies to promote equitable progression, with respect to ethnicity, in the English urology workforce and British Association of Urological Surgeons (BAUS) leadership between 2009 and 2020. Subjects and Methods: A Freedom of Information (FOI) Act request was made to NHS Digital regarding demographic data of clinicians working in urology between 2009 and 2020. Data were collected on urology consultants, specialist registrars and specialty and associate specialist (SAS) doctors over this period. The ethnicities of British Association of Urological Surgeons (BAUS) Trustees and Council Members were determined over the same period, by review of public profiles. Results: The proportion of consultant urologists identified as White decreased from 65.5% to 53.6% ( p < 0.0001), while the proportion of Asian/Asian British consultants increased over the same period (26.9%–36.6%, p < 0.0001). There was a significant increase in Black/Black British trainees (3.0%–11.0%, p < 0.0001) but a decrease in the proportion of Asian/Asian British trainees. Over half of SAS doctors were Asian/British Asian, but this decreased over time as the proportion of white surgeons increased in this group. There was a decrease in the proportion of White urologists occupying BAUS leadership positions (80.6% to 67.6%, p = 0.5). Conclusion: Trends towards increased ethnic diversity were seen across all groups. This was most marked among consultant and SAS doctors. More limited change was observed in the urology leadership. The significance of this is unclear but may reflect a need to address barriers to progression in the highest echelons of urology leadership. The BAUS Widening Participant Group strategy aims to continue this progress, with its 10-point plan designed to support current trainees and tomorrow’s leaders with their career aims. Level of evidence: Not applicable

Are the answers all out there? Investigating citizen information requests in the haze of bureaucratic responsiveness

AbstractUnder freedom of information (FOI) regulations, public officials are pressured to grant citizens access to public information by responding to citizen information requests. However, despite FOI regulations, information requests are treated with varying bureaucratic attention, resulting in a high number of ignored or overdue requests by public organizations. Focusing on this bureaucratic discrimination, this study aims to explain the determinants of varying bureaucratic responsiveness to citizen information requests. Responsiveness in this case is therefore either a successful response to the request, a refusal to respond to the request, or no response at all (i.e., the request is ignored). By drawing on public accountability, and thus a citizen‐driven model of bureaucratic responsiveness, we shed light on the human aspect behind responsiveness to information requests. This research argues that the request's topic as an accountability‐seeking indicator and the communication tone as an indicator for underlying emotions influence responsiveness. The results from applying text mining and text analysis techniques, such as topic modeling and sentiment analysis, on over 100,000 citizen information requests filed via a German online FOI platform support these assumptions.

Multiagency approaches to preventing sudden unexpected death in infancy (SUDI): a review and analysis of UK policies

BackgroundRecent reviews of sudden unexpected deaths in infancy (SUDI) in England recommend a multiagency working (MAW) approach to prevention but lack clear guidance around how this might be implemented.AimsIn England,...

The Dutch Open Government Act: Bridging old and new open government?

Across the globe, ‘old’ open government is gradually transforming into ‘new’ open government. While freedom of information (FOI) legislation is usually associated with old open government, this legislation itself is also on the move. This country report discusses to what extent the Dutch Open Government Act, that has been enacted very recently, reflects this shift from old to new open government. While certainly incorporating features of modern open government, such as the emphasis on machine-readable formats of government documents, traditional elements of FOI legislation, such as the right to request for information without stating an interest, are preserved to ensure adequate access to government information.

E083 A UK review of the use of MRI in the diagnosis of axial SpA

Abstract Background/Aims The National Axial Spondyloarthritis Society (NASS), in collaboration with the British Society for Spondyloarthritis (BRITSpA), sought to understand the current use of and access to MRI in the diagnosis of patients with suspected axial SpA across the UK. They sought to understand if previous inconsistencies in MRI use in clinical practice had improved since the development and publication of a set of recommendations by BRITSpA in 2019. Methods NASS used a Freedom of Information (FOI) request to survey all UK NHS Trusts and Health Boards, assessing the use of MRI in the diagnosis of axial spondyloarthritis (axSpA) and radiologists’ awareness and use of the 2019 BRITSpA consensus guidance. Responses from radiology departments, including musculoskeletal radiologists, were compared against those from the 2017 BRITSpA survey to evaluate changes since the 2019 BritSpA guidance. Results At the time of submission, full responses had been received from 70 trusts across the UK. 61% of respondents reported MRI wait times less than 2 months, compared to 90% previously. 34% of trusts reported using specialist outsourcing services and 30% reported using non-specialist outsourcing services (these data were not available in the previous survey). 89% of respondents routinely used MRI as a diagnostic test, irrespective of abnormalities detected on plain x-rays; by comparison, in the previous survey only a minority routinely used MRI instead of radiographs and the majority (65%) would only use MRI if specifically requested by rheumatologists. All respondents’ MRI protocol included the sacroiliac joints and some combination of spinal segments, as recommended in the consensus guidelines. The consistency of spinal coverage had increased compared to the previous survey, where 5% reported scanning the SIJs alone. Nearly all respondents (97%) utilised fat-suppressed, water sensitive sequences while 77% used fat-sensitive sequences in line with the recommendations. 79% (SIJs) and 73% (spine) of respondents reported being aware of formal recommendations regarding specific MRI features used in the diagnosis of axSpA. For both anatomical sites, less than half of respondents specifically reported awareness of the recommendations regarding imaging features in the 2019 BRITSpA consensus guidance. Radiologists reported using a variety of radiological features and combinations of features (in both the sacroiliac joints and spine) for diagnosis, but the specific features (and combinations) varied widely. Conclusion These data highlight some areas of improvement but also some problematic areas. The routine use of MRI and of recommended MRI protocols have both increased since 2017. However, awareness of the BritSpA consensus guidelines is poor and there is a need to raise awareness of the consensus guidance. Doing so could help to improve consistency, speed and accuracy of diagnosis. The increase in wait times and reliance on outsourcing, including non-specialist services, is a concerning development that warrants further attention. Disclosure T.J. Bray: Other; Tim is working with National Axial Spondyloarthritis Society (NASS) as a clinical associate. This project is supported by NASS. J. Eddison: None.

P138 Inequity in Clinical Commissioning Group funding across England for high-cost biologic drugs in rheumatoid arthritis

Abstract Background/Aims Biologic, and targeted, disease-modifying antirheumatic drugs (bDMARDs/tDMARDs) are recommended for patients in England with high disease activity score rheumatoid arthritis (HDAS-RA) who do not respond to two or more conventional synthetic DMARDs. To prescribe bDMARDs/tDMARDs in England, prescribers must apply for funding via their local clinical commissioning group (CCG). The project aim was to review whether CCGs across England had defined high cost drugs pathways for bDMARDs/tDMARDs use in HDAS-RA and if so, what this pathway looked like regarding drug choice, order of availability, and ability to prescribe as monotherapy. Methods We submitted a freedom of information (FOI) request in October 2021 to all CCGs within England to obtain their high cost drug pathway for bDMARDs/tDMARDs use in HDAS-RA. We then manually reviewed the pathways to determine whether the CCG specified an order of drug prescribing. Data was also gathered on whether CCGs allowed abatacept (ABT), rituximab (RTX), and golimumab (GOL) to be prescribed as monotherapy. Results All 107 CCGs in England responded to the FOI request. 69 out of 107 CCGs (65%) had a pathway for bDMARDs/tDMARDs prescribing. 60 out of 69 CCGs (87%) specified an order for drug prescribing in RA. Within their pathways, CCGs generally fell into 3 prescribing preferences. Table 1 summarises these pathway recommendations. 39 (57%), 59 (86%), and 6 (9%) CCGs allowed ABT/RTX/GOL to be prescribed as monotherapy respectively. RTX monotherapy was specifically allowed outside of special indications such as cancer, interstitial lung disease and multiple sclerosis. Conclusion These findings show there is significant variation across England regarding which bDMARDs/tDMARDs patients can receive for HDAS-RA resulting in a postcode lottery. Several studies support the use of ABT/RTX/GOL as monotherapy and registry data shows that 30-40% of RA patients are administered ABT/RTX/GOL as monotherapy for methotrexate intolerance/contraindication. Lack of NICE appraisal, however, means some CCGs mandate individual funding requests for monotherapy prescribing. We would like to use these results to help negotiate equitable access to bDMARDs/tDMARDs nationwide. Disclosure O. Buckeldee: None. R. Khanna: None. L. Snell: None. L. Attipoe: None.

On citizens' right to information: Justification and analysis of the democratic right to be well informed

On citizens' right to information: Justification and analysis of the democratic right to be well informed

Locating information systems in the freedom of information process

United States federal and state freedom of information (FOI) laws dictate how citizens may obtain access to government records and how records should be provided in response to requests. Yet, the information systems implicated in making and fulfilling FOI requests have received little attention in research. Given the ubiquity of information systems in government recordkeeping and increasingly, in citizen-government interaction, this is a marked oversight. This exploratory, mixed methods study adopts a sociomaterial lens to examine how information systems may be consequential for the outputs and outcomes of the FOI process. We draw on evidence from 132 requests submitted to a sample of municipal governments in two states and interviews with 15 municipal employees of the sampled governments to observe how material and human agency around information systems is reflected in the outputs of requests. Our findings highlight the variety and scope of information systems used in the FOI process and the prevalence of dedicated FOI portals. Stemming from these findings, we propose three contributions: first, the description of how information systems and material agency across the entirety of the FOI process shape its outputs and outcomes; second, the recognition of a customer service paradigm in relevant municipal work and information systems that shifts the primary object of interest from the record to the interaction; and third, an opportunity to conceptualize compliance and transparency in relation to their enactment in sociomaterial routines.