Commercial use of health data in the dock – results of a public “trial”

Introduction Surveys suggest that there is a dichotomy in how citizens view research for public good and research for commercial gain. As a consequence, the idea that a research initiative, such as a learning health system, for both public and commercial benefit may be controversial and reduce public trust. Objectives and Approach This study aims to investigate what informed citizens considered to be appropriate uses of health data in a learning health system. Two paired four-day juries were run, with different jurors but the same purpose, expert witnesses and facilitators. Overall, 694 people applied to be jurors; 36 were selected to match criteria based on national demographics and their prior privacy views. Jurors considered whether and why eight exemplar data uses of depersonalised patient data were acceptable. The exemplars were data uses planned by the learning health system initiative to improve care pathways (planned uses), and possible unplanned data uses. Results All planned uses were considered appropriate by most, but not all, jurors, as they had the potential of benefitting the public through improving care. Positive health outcomes were more acceptable than improved efficiency of services, given jurors prior beliefs about how the NHS operates raising concerns about whether improving efficiency would lead to inequitable distribution or closure of services. The potential uses were considered appropriate where there were improvements in drugs, treatments, or lower NHS costs. Some jurors became more accepting of commercial uses as they understood them better. Commercial uses that prioritised generating profit and did not produce health benefits for the public were unacceptable, regardless of any safeguards for the data. Commercial gain that occurred secondary to achieving public benefit were generally accepted. Conclusion/Implications Juries elicit more informed and nuanced judgement from citizens than surveys. Jurors tended to be more accepting of data sharing to both private and public sector after the jury process. Many jurors accept commercial gain if public benefit is achieved. Some were suspicious of data sharing for efficiency gains

Developing on Shifting Sands: A Case Study of a Workplace Safety Monitoring App During the COVID-19 Pandemic

Drawing on Foucauldian perspectives, this article takes as a case study the workplace safety app Hygieia, which emerged in response to the COVID-19 pandemic. We explore how the app’s users were positioned in relation to questions of responsibility, agency, potential surveillance, and the app’s general features. We used qualitative, semistructured interviews with nine of Hygieia’s developers and conducted an autoethnographic analysis of the app, drawing on the “walkthrough” method. This combination allowed for a robust analysis of envisioned and actual functionalities. Developers’ own ideas about workplace safety were realized in their design choices, creating a network of actors and informational flows coordinated by the app. We argue that the app produces instances of responsibilization in which users are individualized, depersonalized, and encouraged to use the app in particular ways. We question this configuration by emphasizing potential implications for agency, accountability, and privacy, and highlight how ordinary employees appear to shoulder a burden of responsibility for workplace safety against a backdrop of uncertainty, heightened surveillance, and moral obligations. At the same time, some levels of responsibilization and surveillance were also necessary in the context of the pandemic. This article makes a novel contribution to digital surveillance and organization studies by applying Foucauldian perspectives to the new context of developing monitoring support technologies during the COVID-19 pandemic

Disparities in COVID-19 infection, hospitalisation and death in people with schizophrenia, bipolar disorder, and major depressive disorder: a cohort study of the UK Biobank

People with severe mental illness (SMI; including schizophrenia/psychosis, bipolar disorder (BD), major depressive disorder (MDD)) experience large disparities in physical health. Emerging evidence suggests this group experiences higher risks of infection and death from COVID-19, although the full extent of these disparities are not yet established. We investigated COVID-19 related infection, hospitalisation and mortality among people with SMI in the UK Biobank (UKB) cohort study. Overall, 447,296 participants from UKB (schizophrenia/psychosis = 1925, BD = 1483 and MDD = 41,448, non-SMI = 402,440) were linked with healthcare and death records. Multivariable logistic regression analysis was used to examine differences in COVID-19 outcomes by diagnosis, controlling for sociodemographic factors and comorbidities. In unadjusted analyses, higher odds of COVID-19 mortality were seen among people with schizophrenia/psychosis (odds ratio [OR] 4.84, 95% confidence interval [CI] 3.00–7.34), BD (OR 3.76, 95% CI 2.00–6.35), and MDD (OR 1.99, 95% CI 1.69–2.33) compared to people with no SMI. Higher odds of infection and hospitalisation were also seen across all SMI groups, particularly among people with schizophrenia/psychosis (OR 1.61, 95% CI 1.32–1.96; OR 3.47, 95% CI 2.47–4.72) and BD (OR 1.48, 95% CI 1.16–1.85; OR 3.31, 95% CI 2.22–4.73). In fully adjusted models, mortality and hospitalisation odds remained significantly higher among all SMI groups, though infection odds remained significantly higher only for MDD. People with schizophrenia/psychosis, BD and MDD have higher risks of COVID-19 infection, hospitalisation and mortality. Only a proportion of these disparities were accounted for by pre-existing demographic characteristics or comorbidities. Vaccination and preventive measures should be prioritised in these particularly vulnerable groups

Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens� Juries

BackgroundThe secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information.ObjectiveThe aim of this project was to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process using citizens' juries.MethodsTwo 3-day citizens' juries, of 17 citizens each, were convened to reflect UK national demographics from 355 eligible applicants. Each jury addressed the mission "To what extent should patients control access to patient records for secondary use?" Jurors heard from and questioned 5 expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate among themselves, including discussion and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and at end of the process.ResultsAt the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt out, 6 favoring opt in, and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whereas jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas 2 moved toward more patient control over patient records.ConclusionsThe findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual's right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to opt out if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less skeptical about health data sharing, as they became better informed of its benefits and risks

Toward the development of data governance standards for using clinical free-text data in health research: position paper

Background: Clinical free-text data (eg, outpatient letters or nursing notes) represent a vast, untapped source of rich information that, if more accessible for research, would clarify and supplement information coded in structured data fields. Data usually need to be deidentified or anonymized before they can be reused for research, but there is a lack of established guidelines to govern effective deidentification and use of free-text information and avoid damaging data utility as a by-product. Objective: This study aimed to develop recommendations for the creation of data governance standards to integrate with existing frameworks for personal data use, to enable free-text data to be used safely for research for patient and public benefit. Methods: We outlined data protection legislation and regulations relating to the United Kingdom for context and conducted a rapid literature review and UK-based case studies to explore data governance models used in working with free-text data. We also engaged with stakeholders, including text-mining researchers and the general public, to explore perceived barriers and solutions in working with clinical free-text. Results: We proposed a set of recommendations, including the need for authoritative guidance on data governance for the reuse of free-text data, to ensure public transparency in data flows and uses, to treat deidentified free-text data as potentially identifiable with use limited to accredited data safe havens, and to commit to a culture of continuous improvement to understand the relationships between the efficacy of deidentification and reidentification risks, so this can be communicated to all stakeholders. Conclusions: By drawing together the findings of a combination of activities, we present a position paper to contribute to the development of data governance standards for the reuse of clinical free-text data for secondary purposes. While working in accordance with existing data governance frameworks, there is a need for further work to take forward the recommendations we have proposed, with commitment and investment, to assure and expand the safe reuse of clinical free-text data for public benefit

Applying Team Science to Collaborative Digital Health Research : Learnings from the Wearable Clinic

Collaboration across disciplinary boundaries is vital to address the complex challenges and opportunities in Digital Health. We present findings and experiences of applying the principles of Team Science to a digital health research project called 'The Wearable Clinic'. Challenges faced were a lack of shared understanding of key terminology and concepts, and differences in publication cultures between disciplines. We also encountered more profound discrepancies, relating to definitions of "success" in a research project. We recommend that collaborative digital health research projects select a formal Team Science methodology from the outset

Presentation of laboratory test results in patient portals: influence of interface design on risk interpretation and visual search behaviour

Abstract Background Patient portals are considered valuable instruments for self-management of long term conditions, however, there are concerns over how patients might interpret and act on the clinical information they access. We hypothesized that visual cues improve patients’ abilities to correctly interpret laboratory test results presented through patient portals. We also assessed, by applying eye-tracking methods, the relationship between risk interpretation and visual search behaviour. Methods We conducted a controlled study with 20 kidney transplant patients. Participants viewed three different graphical presentations in each of low, medium, and high risk clinical scenarios composed of results for 28 laboratory tests. After viewing each clinical scenario, patients were asked how they would have acted in real life if the results were their own, as a proxy of their risk interpretation. They could choose between: 1) Calling their doctor immediately (high interpreted risk); 2) Trying to arrange an appointment within the next 4 weeks (medium interpreted risk); 3) Waiting for the next appointment in 3 months (low interpreted risk). For each presentation, we assessed accuracy of patients’ risk interpretation, and employed eye tracking to assess and compare visual search behaviour. Results Misinterpretation of risk was common, with 65% of participants underestimating the need for action across all presentations at least once. Participants found it particularly difficult to interpret medium risk clinical scenarios. Participants who consistently understood when action was needed showed a higher visual search efficiency, suggesting a better strategy to cope with information overload that helped them to focus on the laboratory tests most relevant to their condition. Conclusions This study confirms patients’ difficulties in interpreting laboratories test results, with many patients underestimating the need for action, even when abnormal values were highlighted or grouped together. Our findings raise patient safety concerns and may limit the potential of patient portals to actively involve patients in their own healthcare