Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics

OBJECTIVES:  Recognising dilemmas posed by the sharing and reuse of health data as a classic wicked problem and uncover some current key challenges to clinical research informatics. METHODS:  A modified thematic review process including identification of agreed critical research questions, appropriate query terms and search strategy, identification of relevant papers in accordance with inclusion criteria, and authors' co-review of full text papers. RESULTS:  Queries returned 4,779 papers published between January 2014 and November 2017. A shortlist of 197 abstracts was analysed and 18 papers were finally selected for review. Thematic assessment of findings revealed four key challenges: (1) uncertain reliability of consent as a cornerstone of trust due to the limits to understanding and awareness of data sharing; (2) ethical challenges around equity and autonomy; (3) ambitious overly theoretical governance frameworks lacking practical validity; and (4) a clear desire for further public and individual engagement to achieve clearer and more nuanced knowledge dissemination around data sharing practice and governance frameworks. CONCLUSIONS:  Understanding the wicked problem of reusing clinically acquired health data for research purposes is essential if clinical research is to benefit from informatics advances. A lack of understanding around the context of data acquisition and sharing undermines the foundations of patient-professional trust. Efforts to protect privacy, where tailoring to specific contexts is a key driver, should support the development of solutions which more adequately honour privacy needs, justify access, and protect equity and autonomy

Building food composition tables: extraction methods to measure lutein and zeaxanthin concentrations in select Australian foods

This is the final version. Available on open access from Wiley via the DOI in this recordData availability statement: The data that support the findings of this study are available from the corresponding author upon reasonable request.The lutein and zeaxanthin (L/Z) in food composition tables has infrequently utilised methods optimised for L/Z and comprehensive data are absent, such as in Australia. These absences limit quality dietary intake research. This study investigated optimisation of extraction methods for lutein and zeaxanthin in five Australian foods analysed by high-performance liquid chromatography and photodiode array detection. The foods were broccoli, broccolini, baby spinach, baby orange capsicum, and dried goji berry. Twelve variations in extraction methods were investigated, including saponification, sonication, and solvent choice. L/Z concentrations differed by up to more than 125% between variations. Variation nine was best for all foods except zeaxanthin in broccoli where variation five or seven were best. The L/Z concentrations measured differed in Australian and United States data; existing data may therefore not be representative of the current food supply. Development of local Australian food composition data for lutein and zeaxanthin is warranted

Assessing electronic device use behaviours in healthy adults: development and evaluation of a novel tool

This is the final version. Available on open access from BMC via the DOI in this recordAvailability of data and materials: The dataset supporting the conclusions of this article is available in the UQeSpace repository, https://doi.org/10.48610/61b97b1BACKGROUND: Chronic exposure of the macula to blue light from electronic devices has been identified as a potential macular health concern. The impacts remain poorly investigated as no validated methods to capture usual device use behaviours exist. PURPOSE: The aim of this study was to develop and validate the Electronic Device Use Questionnaire (EDUQ) against multiple 24-h electronic device use diaries in healthy Australian and United Kingdom adults. METHODS: The EDUQ and diaries were developed to capture device use across categories (television, computer and handheld devices). Over eight weeks 56 Australian and 24 United Kingdom participants completed three questionnaires and eight diaries via online platforms. Tool validity was determined through Bland-Altman plot analysis of mean daily hours of device use between the tools. RESULTS: The EDUQ demonstrated poor validity in both cohorts with poor agreement when compared with the diaries. When the device categories were combined, a mean difference between the tools of 1.54 h/day, and 95% limits of agreement between -2.72 h/day and 5.80 h/day was observed in the Australian cohort. Across both cohorts and all device categories the mean differences indicated individuals were more likely to report higher device use through the questionnaire rather than diaries. CONCLUSIONS: The EDUQ is a novel tool and demonstrated the difficulty for participants of accurately recalling usual behaviour of device use. Poor agreement in reported device use occurred across all device categories. The poor agreement may be related to factors such as memory recall bias, and the number of diaries captured not being reflective of usual use. Future studies should look to address these factors to improve validity of device use capture.QUEX Institut

“It’s hard to tell”. The challenges of scoring patients on standardised outcome measures by multidisciplinary teams: a case study of Neurorehabilitation

Background Interest is increasing in the application of standardised outcome measures in clinical practice. Measures designed for use in research may not be sufficiently precise to be used in monitoring individual patients. However, little is known about how clinicians and in particular, multidisciplinary teams, score patients using these measures. This paper explores the challenges faced by multidisciplinary teams in allocating scores on standardised outcome measures in clinical practice. Methods Qualitative case study of an inpatient neurorehabilitation team who routinely collected standardised outcome measures on their patients. Data were collected using non participant observation, fieldnotes and tape recordings of 16 multidisciplinary team meetings during which the measures were recited and scored. Eleven clinicians from a range of different professions were also interviewed. Data were analysed used grounded theory techniques. Results We identified a number of instances where scoring the patient was 'problematic'. In 'problematic' scoring, the scores were uncertain and subject to revision and adjustment. They sometimes required negotiation to agree on a shared understanding of concepts to be measured and the guidelines for scoring. Several factors gave rise to this problematic scoring. Team members' knowledge about patients' problems changed over time so that initial scores had to be revised or dismissed, creating an impression of deterioration when none had occurred. Patients had complex problems which could not easily be distinguished from each other and patients themselves varied in their ability to perform tasks over time and across different settings. Team members from different professions worked with patients in different ways and had different perspectives on patients' problems. This was particularly an issue in the scoring of concepts such as anxiety, depression, orientation, social integration and cognitive problems. Conclusion From a psychometric perspective these problems would raise questions about the validity, reliability and responsiveness of the scores. However, from a clinical perspective, such characteristics are an inherent part of clinical judgement and reasoning. It is important to highlight the challenges faced by multidisciplinary teams in scoring patients on standardised outcome measures but it would be unwarranted to conclude that such challenges imply that these measures should not be used in clinical practice for decision making about individual patients. However, our findings do raise some concerns about the use of such measures for performance management

Serotonin reuptake inhibitors and mortality in epilepsy: A linked primary-care cohort study

OBJECTIVE: Preliminary evidence suggests that serotonin reuptake inhibitor (SRI) use may increase postictal respiratory drive and prevent death. We sought to determine whether SRIs are associated with improved all-cause and possible seizure-specific mortality in patients with epilepsy. METHODS: Patients with epilepsy and a random 10:1 sample without epilepsy were extracted from The ClinicAl research using LInked Bespoke studies and Electronic health Records (CALIBER) resource. The hazard ratio (HR) of all-cause and possible seizure-specific mortality, treating SRI use as a time-varying covariate, was determined using the date of a second SRI prescription as exposure and in discrete 6-month periods over the entire duration of follow-up. We used Cox regression and competing risk models with Firth correction to calculate the HR. We controlled for age, sex, depression, comorbidity, (Charlson comorbidity index) and socioeconomic status (Index of Multiple Deprivation). RESULTS: We identified 2,718,952 eligible patients in CALIBER, of whom 16,379 (0.60%) had epilepsy. Median age and follow-up were 44 (interquartile range [IQR] 29-61]) and 6.4 years (IQR 2.4-10.4 years), respectively, and 53% were female. A total of 2,178 patients (13%) had at least two SRI prescriptions. Hazard of all-cause mortality was significantly elevated following a second prescription for an SRI (HR 1.64 95% confidence interval [95% CI] 1.44-1.86; p < 0.001). The HR was similar in 163,778 age, sex, and general practitioner (GP) practice-matched controls without epilepsy. Exposure to an SRI was not associated with seizure-related death (HR 1.08, 95% CI 0.59-1.97; 0.796). SIGNIFICANCE: There is no evidence in this large population-based cohort that SRIs protect against all-cause mortality or seizure-specific mortality. Rather, SRI use was associated with increased mortality, irrespective of epilepsy, which is probably due to various factors associated with the use of antidepressants. Larger studies with systematically collected clinical data are needed to shed further light on these findings

'What is the risk to me from COVID-19?': Public involvement in providing mortality risk information for people with 'high-risk' conditions for COVID-19 (OurRisk.CoV)

Patients and public have sought mortality risk information throughout the pandemic, but their needs may not be served by current risk prediction tools. Our mixed methods study involved: (1) systematic review of published risk tools for prognosis, (2) provision and patient testing of new mortality risk estimates for people with high-risk conditions and (3) iterative patient and public involvement and engagement with qualitative analysis. Only one of 53 (2%) previously published risk tools involved patients or the public, while 11/53 (21%) had publicly accessible portals, but all for use by clinicians and researchers.Among people with a wide range of underlying conditions, there has been sustained interest and engagement in accessible and tailored, pre- and postpandemic mortality information. Informed by patient feedback, we provide such information in 'five clicks' (https://covid19-phenomics.org/OurRiskCoV.html), as context for decision making and discussions with health professionals and family members. Further development requires curation and regular updating of NHS data and wider patient and public engagement

Acute psychiatric admissions from an out-of-hours Casualty Clinic; how do referring doctors and admitting specialists agree?

BACKGROUND: Over the last decades there has been an increasing pressure on the acute psychiatric wards in Norway. The major contributor to psychiatric acute admissions at the University Hospital of North Norway in the city of Tromsø in 2001 was the GP-based Tromsø Casualty Clinic, only open out-of-hours. We explored all acute psychiatric referrals from Tromsø Casualty Clinic in 2001. The purpose of the study was to characterize the admissions and assess the agreement between the referring doctors and the hospital specialists according to the need for hospitalization, agreement on application of the law and the diagnostic evaluation to assess whether the admissions were appropriate. METHODS: Retrospective, record based, descriptive study comprising 101 psychiatric acute referrals from the Tromsø Casualty Clinic to the psychiatric acute wards at the University Hospital of North Norway. RESULTS: The specialists accepted all referrals except one, they mostly agreed upon the diagnoses suggested by the referring doctors and they mostly confirmed the application of the law. Seventy-five percent of the admissions took place during weekends, public holidays or nighttimes. Diagnoses of psychoses or suicidal attempts accounted for 76 % of the total referrals. Substance abuse was noted for 43 %, and in 22 % of all admissions the patients had stopped taking their psychopharmacological medication. The police assisted the referring doctors in one third of all admissions, and was the legal representative in 52 out of 59 involuntary admissions. Thirty percent of the admissions were first- time admissions. Thirty-two percent of the hospital stays lasted for three days or less. Median length of stay was 6.5 days. CONCLUSION: The casualty clinic physicians and the hospital specialists mostly agreed in their evaluation of patients indicating that most of the admissions were appropriate. The police was more often involved in the involuntary admissions than intended in the law. The proportion of patients with substance abuse was significant. Alternative treatment strategies should be developed for non-psychotic patients in need of short-term stays

Estimated impact of the COVID-19 pandemic on cancer services and excess 1-year mortality in people with cancer and multimorbidity: near real-time data on cancer care, cancer deaths and a population-based cohort study

OBJECTIVES: To estimate the impact of the COVID-19 pandemic on cancer care services and overall (direct and indirect) excess deaths in people with cancer. METHODS: We employed near real-time weekly data on cancer care to determine the adverse effect of the pandemic on cancer services. We also used these data, together with national death registrations until June 2020 to model deaths, in excess of background (pre-COVID-19) mortality, in people with cancer. Background mortality risks for 24 cancers with and without COVID-19-relevant comorbidities were obtained from population-based primary care cohort (Clinical Practice Research Datalink) on 3 862 012 adults in England. RESULTS: Declines in urgent referrals (median=-70.4%) and chemotherapy attendances (median=-41.5%) to a nadir (lowest point) in the pandemic were observed. By 31 May, these declines have only partially recovered; urgent referrals (median=-44.5%) and chemotherapy attendances (median=-31.2%). There were short-term excess death registrations for cancer (without COVID-19), with peak relative risk (RR) of 1.17 at week ending on 3 April. The peak RR for all-cause deaths was 2.1 from week ending on 17 April. Based on these findings and recent literature, we modelled 40% and 80% of cancer patients being affected by the pandemic in the long-term. At 40% affected, we estimated 1-year total (direct and indirect) excess deaths in people with cancer as between 7165 and 17 910, using RRs of 1.2 and 1.5, respectively, where 78% of excess deaths occured in patients with ≥1 comorbidity. CONCLUSIONS: Dramatic reductions were detected in the demand for, and supply of, cancer services which have not fully recovered with lockdown easing. These may contribute, over a 1-year time horizon, to substantial excess mortality among people with cancer and multimorbidity. It is urgent to understand how the recovery of general practitioner, oncology and other hospital services might best mitigate these long-term excess mortality risks

The association between hip fracture and hip osteoarthritis: A case-control study

<p>Abstract</p> <p>Background</p> <p>There have been reports both supporting and refuting an inverse relationship between hip fracture and hip osteoarthritis (OA). We explore this relationship using a case-control study design.</p> <p>Methods</p> <p>Exclusion criteria were previous hip fracture (same side or contralateral side), age younger than 60 years, foreign nationality, pathological fracture, rheumatoid arthritis and cases were radiographic examinations were not found in the archives. We studied all subjects with hip fracture that remained after the exclusion process that were treated at Akureyri University Hospital, Iceland 1990-2008, n = 562 (74% women). Hip fracture cases were compared with a cohort of subjects with colon radiographs, n = 803 (54% women) to determine expected population prevalence of hip OA. Presence of radiographic hip OA was defined as a minimum joint space of 2.5 mm or less on an anteroposterior radiograph, or Kellgren and Lawrence grade 2 or higher. Possible causes of secondary osteoporosis were identified by review of medical records.</p> <p>Results</p> <p>The age-adjusted odds ratio (OR) for subjects with hip fracture having radiographic hip OA was 0.30 (95% confidence interval [95% CI] 0.12-0.74) for men and 0.33 (95% CI 0.19-0.58) for women, compared to controls. The probability for subjects with hip fracture and hip OA having a secondary cause of osteoporosis was three times higher than for subjects with hip fracture without hip OA.</p> <p>Conclusion</p> <p>The results of our study support an inverse relationship between hip fractures and hip OA.</p