Changing the process of prescribing to procuring lymphoedema compression garments: a service evaluation

Compression garments are the mainstay of lymphoedema treatment, yet the process of obtaining by prescription is lengthy, governed by funding, involves numerous professionals with little patient value and often involes copious inaccuracies, delays and errors. This service evaluation estimates the potential impact of changing the way compression garments are accessed from a prescription to a procurement process. The main objective was to estimate the impact and costs of altering the process within the NHS Wales setting. A service evaluation was formally supported by Medicine Management and Lymphoedema Wales Strategy Board to compare the prescription process to a new procuring route. A form was devised so that data was could be collected over 12 months by lymphoedema therapists on each compression garment issued to patients attending two lymphoedema services in NHS Wales. The data collected included information on the garment ordered, costs (prescribed compared to procured), timing between garment ordered and received plus a comparison of the processes. All non-patient identifiable data was entered into a database and comparison analysis was completed to identify any correlations between the variables collected. The project was ratified by research and development as service evaluation. There was a total of 5392 completed patient data forms were included, which when compared to the processes indicated that using a prescription route is overwhelmingly more costly than procuring. Overall costs suggest the potential for substantial savings to NHS Wales (£71.10 per patient) were statistically significant (P<0.001). Potential for improved patient outcomes was observed as garments were provided directly on appointment instead of significant delays promoting value-based healthcare.

OPTIMISE: MS study protocol: a pragmatic, prospective observational study to address the need for, and challenges with, real world pharmacovigilance in multiple sclerosis

IntroductionThe power of ‘real world’ data to improve our understanding of the clinical aspects of multiple sclerosis (MS) is starting to be realised. Disease modifying therapy (DMT) use across the UK is driven by national prescribing guidelines. As such, the UK provides an ideal country in which to gather MS outcomes data. A rigorously conducted observational study with a focus on pharmacovigilance has the potential to provide important data to inform clinicians and patients while testing the reliability of estimates from pivotal trials when applied to patients in the UK.Methods and analysisThe primary aim of this study is to characterise the incidence and compare the risk of serious adverse events in people with MS treated with DMTs. The OPTIMISE:MS database enables electronic data capture and secure data transfer. Selected clinical data, clinical histories and patient-reported outcomes are collected in a harmonised fashion across sites at the time of routine clinical visits. The first patient was recruited to the study on 24 May 2019. As of January 2021, 1615 individuals have baseline data recorded; follow-up data are being captured and will be reported in due course.Ethics and disseminationThis study has ethical permission (London City and East; Ref 19/LO/0064). Potential concerns around data storage and sharing are mitigated by the separation of identifiable data from all other clinical data, and limiting access to any identifiable data. The results of this study will be disseminated via publication. Participants provide consent for anonymised data to be shared for further research use, further enhancing the value of the study.

Criminal Record Stigma and Surveillance in the Digital Age

This review analyzes criminal record stigma and surveillance through the concept of digital punishment: the collection and widespread dissemination of personally identifiable data by the American criminal legal system and subsequent private actors. The analysis is organized into three parts: a descriptive account of the technological, legal, and social factors that have created mass criminal record data; a theoretical framework for understanding digital criminal records through stigma and surveillance theories; and an argument that contemporary criminal records constitute digital punishment, with emphasis placed on how digital records are disordered, commodified, and biased. I close by raising policy-relevant questions about the widespread disclosure and uses of criminal legal system data for extralegal purposes. Expected final online publication date for the Annual Review of Criminology, Volume 5 is January 2022. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Towards a Modular On-Premise Approach for Data Sharing

The growing demand for everyday data insights drives the pursuit of more sophisticated infrastructures and artificial intelligence algorithms. When combined with the growing number of interconnected devices, this originates concerns about scalability and privacy. The main problem is that devices can detect the environment and generate large volumes of possibly identifiable data. Public cloud-based technologies have been proposed as a solution, due to their high availability and low entry costs. However, there are growing concerns regarding data privacy, especially with the introduction of the new General Data Protection Regulation, due to the inherent lack of control caused by using off-premise computational resources on which public cloud belongs. Users have no control over the data uploaded to such services as the cloud, which increases the uncontrolled distribution of information to third parties. This work aims to provide a modular approach that uses cloud-of-clouds to store persistent data and reduce upfront costs while allowing information to remain private and under users’ control. In addition to storage, this work also extends focus on usability modules that enable data sharing. Any user can securely share and analyze/compute the uploaded data using private computing without revealing private data. This private computation can be training machine learning (ML) models. To achieve this, we use a combination of state-of-the-art technologies, such as MultiParty Computation (MPC) and K-anonymization to produce a complete system with intrinsic privacy properties.

Future Pharmacists’ Opinions on the Facilitation of Self-Care with Over-the-Counter Products and Whether This Should Remain a Core Role

Background: The aim was to investigate pharmacy students’ views on the role of the pharmacist in facilitating self-care with over-the-counter (OTC) medicines, particularly in light of new roles, and establish personal practice. Methods: Final year pharmacy students at Queen’s University Belfast were invited to participate. Data were collected via a pre-piloted questionnaire, distributed at a compulsory class (only non-identifiable data were requested). Descriptive statistics were performed, and non-parametric tests were employed for inferential statistical analysis (responses by gender). Results: The response rate was 87.6% (78/89); 34.6% (27/78) males and 65.4% (51/78) females. Over a third [34.6% (27/78)] reported using OTC medicines about once a month. All appreciated the importance of an evidence-based approach to optimize patient care. Most [(96.2% (75/78)] deemed OTC consultations should remain a fundamental responsibility of pharmacists and 69.2% (54/78) thought OTC consultations have the potential to be as complex as independent pharmacist prescribing. Females felt more confident recommending OTC emergency contraception than males (p = 0.002 for levonorgestrel and p = 0.011 for ulipristal acetate). Many [61.5% (48/78)] considered more medicines should not be deregulated from prescription-only status. Conclusions: Data from this single institution suggests that enabling self-medication is an important part of practice but there were confidence issues around deregulations.

Public attitudes towards COVID-19 and data sharing: A survey-based study to understand the security and privacy concerns over the use of identifiable health data in light of COVID-19 (Preprint)

BACKGROUND The COVID-19 pandemic stimulated the availability and use of population and individual health data to optimise tracking and analysis of the spread of the virus. Many health care services have had to rapidly digitalise in order to maintain the continuity of care provision. Data collection and dissemination have provided critical support to defence against the spread of the virus since the beginning of the pandemic; however, little is known about public perceptions of and attitudes towards the use, privacy and security of data. OBJECTIVE The goal of this study is to better understand people’s willingness to share data in the context of COVID-19. METHODS A web-based survey was conducted, looking at individuals’ use of and attitudes toward health data for those 18 years and older, and in particular, those with a reported diagnosis of a chronic health condition placing them most ‘at risk’ of severe COVID-19. RESULTS In total, 4,764 individuals responded to this web-based survey. 4,674 (98.1%) reported a medical diagnosis of at least 1 health condition (average 4 per person), with type 2 diabetes (2,974, 62.7%), hypertension (2,147, 45.2%) and type 1 diabetes (1,299, 27.4%) being most prominent in our sample. In general, more people are comfortable with sharing anonymised data than personally identifiable data. People reported feeling comfortable sharing data that were able to benefit others; 66% (3,121 respondents) would share personal identifiable data if its primary purpose was deemed beneficial for the health of others. Almost two-thirds (3,026; 63.9%) would consent to sharing personal, sensitive health data with government or health authority organisations. Conversely, over a quarter of respondents (1,297, 27.8%) stated they did not trust any organisation to protect their data and 54% (2,528) reported concerns about the implications of sharing personal information. Almost two-thirds (3,054, 65%) of respondents were concerned around the provisions of appropriate legislation that seeks to prevent data misuse and hold organisations accountable in the case of data misuse. CONCLUSIONS Although our survey focused mainly on the views of those living with chronic health conditions, the results indicate that data sensitivity is highly contextual. More people are comfortable with sharing anonymised data than personally identifiable data. Willingness to share data also depended on the receiving body, highlighting trust as a key theme, in particular who may have access to shared personal health data and how they may be used in the future. This in turn suggests that anonymisation’s disadvantages (in terms of confirming data and correlating shared with other data) might be offset by better (wider, deeper, more accurate) sampling leading to greater validity of results. Further evidence comes from the interaction (or correlation) between these attitudinal responses and other characteristics, meaning that non-anonymised collection might lead to biased results. The nascency of legal guidance in this area suggests a need for humanitarian guidelines for data responsibility during disaster relief operations such as pandemics, and for involving the public in their development. CLINICALTRIAL Ethics approval was obtained from the Human Research Ethics Committee (HREC) of the University of Warwick (BSREC 144/19-20).

Comparison of identifiable and non-identifiable data linkage: health technology assessment of MitraClip using registry, administrative and mortality datasets

ObjectivesThe UK MitraClip registry was commissioned by National Health Service (NHS) England to assess real-world outcomes from percutaneous mitral valve repair for mitral regurgitation using a new technology, MitraClip. This study aimed to determine longitudinal patient outcomes by linking to routine datasets: Hospital Episode Statistics (HES) Admitted Patient Care (APC) and Office of National Statistics.MethodsTwo methods of linkage were compared, using identifiable (NHS number, date of birth, postcode, gender) and non-identifiable data (hospital trust, age in years, admission, discharge and operation dates, operation and diagnosis codes). Outcome measures included: matching success, patient demographics, all-cause mortality and subsequent cardiac intervention.ResultsA total of 197 registry patients were eligible for matching with routine administrative data. Using identifiable linkage, a total of 187 patients (94.9%) were matched with the HES APC dataset. However, 21 matched individuals (11.2%) had inconsistencies across the datasets (eg, different gender) and were subsequently removed, leaving 166 (84.3%) for analysis. Using non-identifiable data linkage, a total of 170 patients (86.3%) were uniquely matched with the HES APC dataset.Baseline patient characteristics were not significantly different between the two methods of data linkage. The total number of deaths (all causes) identified from identifiable and non-identifiable linkage methods was 37 and 40, respectively, and the difference in subsequent cardiac interventions identified between the two methods was negligible.ConclusionsPatients from a bespoke clinical procedural registry were matched to routine administrative data using identifiable and non-identifiable methods with equivalent matching success rates, similar baseline characteristics and similar 2-year outcomes.

Establishing the safety of waterbirth for mothers and babies: a cohort study with nested qualitative component: the protocol for the POOL study

IntroductionApproximately 60 000 (9/100) infants are born into water annually in the UK and this is likely to increase. Case reports identified infants with water inhalation or sepsis following birth in water and there is a concern that women giving birth in water may sustain more complex perineal trauma. There have not been studies large enough to show whether waterbirth increases these poor outcomes. The POOL Study (ISRCTN13315580) plans to answer the question about the safety of waterbirths among women who are classified appropriate for midwifery-led intrapartum care.Methods and analysisA cohort study with a nested qualitative component. Objectives will be answered using retrospective and prospective data captured in electronic National Health Service (NHS) maternity and neonatal systems. The qualitative component aims to explore factors influencing pool use and waterbirth; data will be gathered via discussion groups, interviews and case studies of maternity units.Ethics and disseminationThe protocol has been approved by NHS Wales Research Ethics Committee (18/WA/0291) the transfer of identifiable data has been approved by Health Research Authority Confidentiality Advisory Group (18CAG0153).Study findings and innovative methodology will be disseminated through peer-reviewed journals, conferences and events. Results will be of interest to the general public, clinical and policy stakeholders in the UK and will be disseminated accordingly.

Improving Inter-Agency Data Sharing Through Linkage Spine Interoperability

IntroductionLinkage of Federal Government data in Australia is conducted primarily through Accredited Integrating Authorities (AIAs). These agencies hold different dataset from Commonwealth and state/territory government agencies. Historically, linkage projects involving data held by different AIAs has been inefficient, requiring the transfer of identifiable data between agencies, and relinking data that have already been linked by another agency. Objectives and ApproachTwo AIAs (the AIHW and ABS) have developed a system of interoperable linkage spines to address this issue. By using common datasets as a base, the agencies have improved the efficiency and security of linkage projects. This process was developed through an analysis of spine datasets, and two test projects to share data between the agencies. ResultsThe two test projects were successfully able to link cross-portfolio and cross-jurisdictional data without the need to share additional identifying information between the AIAs. Preliminary results suggest a high linkage rate from this process, and work is underway to quantify the linkage quality compared to traditional linkage methodologies. The ABS and AIHW are also investigating the implications for linkage quality as more datasets are included in the agencies’ linkage spines. Conclusion / ImplicationsThe success of this project will increase the efficiency of cross-jurisdictional and cross-portfolio linkage in Australia. It will also allow specialised AIAs to work on datasets where they have specific expertise, and feed these into broader projects. This is expected to have an additional impact on public trust in the linkage system, by minimising the sharing of personally identifiable information while still maintaining high quality linkage.