The SCCAI was designed to facilitate assessment of disease activity in ulcerative colitis (UC). We aimed to interrogate the metric properties of individual items of the SCCAI using item response ...theory (IRT) analysis, to simplify and improve its performance.
The original 9-item SCCAI was collected through TrueColours, a real-time software platform which allows remote entry and monitoring of patients with UC. Data were securely uploaded onto Dementias Platform UK Data Portal, where they were analysed in Stata 16.1 SE. A 2-parameter (2-PL) logistic IRT model was estimated to evaluate each item of the SCCAI for its informativeness (discrimination). A revised scale was generated and re-assessed following systematic removal of items.
SCCAI data for 516 UC patients (41 years, SD = 15) treated in Oxford were examined. After initial item deletion (Erythema nodosum, Pyoderma gangrenosum), a 7-item scale was estimated. Discrimination values (information) ranged from 0.41 to 2.52 indicating selected item inefficiency with three items < 1.70 which is a suggested discriminatory value for optimal efficiency. Systematic item deletions found that a 4-item scale (bowel frequency day; bowel frequency nocturnal; urgency to defaecation; rectal bleeding) was more informative and discriminatory of trait severity (discrimination values of 1.50 to 2.78). The 4-item scale possesses higher scalability and unidimensionality, suggesting that the responses to items are either direct endorsement (patient selection by symptom) or non-endorsement of the trait (disease activity).
Reduction of the SCCAI from the original 9-item scale to a 4-item scale provides optimum trait information that will minimise response burden. This new 4-item scale needs validation against other measures of disease activity such as faecal calprotectin, endoscopy and histopathology.
ObjectiveOpenClinical.net is a way of disseminating clinical guidelines to improve quality of care whose distinctive feature is to combine the benefits of clinical guidelines and other human-readable ...material with the power of artificial intelligence to give patient-specific recommendations. A key objective is to empower healthcare professionals to author, share, critique, trial and revise these ‘executable’ models of best practice.DesignOpenClinical.net Alpha (www.openclinical.net) is an operational publishing platform that uses a class of artificial intelligence techniques called knowledge engineering to capture human expertise in decision-making, care planning and other cognitive skills in an intuitive but formal language called PROforma.3 PROforma models can be executed by a computer to yield patient-specific recommendations, explain the reasons and provide supporting evidence on demand.ResultsPROforma has been validated in a wide range of applications in diverse clinical settings and specialties, with trials published in high impact peer-reviewed journals. Trials have included patient workup and risk assessment; decision support (eg, diagnosis, test and treatment selection, prescribing); adaptive care pathways and care planning. The OpenClinical software platform presently supports authoring, testing, sharing and maintenance. OpenClinical’s open-access, open-source repository Repertoire currently carries approximately 50+ diverse examples (https://openclinical.net/index.php?id=69).ConclusionOpenClinical.net is a showcase for a PROforma-based approach to improving care quality, safety, efficiency and better patient experience in many kinds of routine clinical practice. This human-centred approach to artificial intelligence will help to ensure that it is developed and used responsibly and in ways that are consistent with professional priorities and public expectations.
Objective
The purpose of this study was to explore whether patients with musculoskeletal conditions would agree to use digital technologies to learn about research registries and make a decision ...about signing up whilst in the clinic waiting room.
Methods
Patients were recruited from four hospital clinics across Oxfordshire. We used an explanatory mixed methods design with two sequential phases comprising an exploratory, cross-sectional questionnaire (n = 84), followed by focus group interviews (n = 8) to provide context for the findings from the questionnaire. Multivariate ordinal logistic regression models were used to explore relationships between patient preferences and characteristics. Thematic analysis was used to understand the reasons for patient preferences regarding digital technologies and research registries.
Results
As participants' age increased, they were more likely to report a preference for face-to-face recruitment methods compared to those using digital technologies. Findings from the focus groups indicated this was primarily due to a fear of technology and physical limitations associated with a patient's condition. Patients also reported a preference for making a decision about signing up at a later date, which was attributed to patients feeling distracted whilst in the waiting room due to anxieties related to their upcoming appointment.
Conclusions
Many patients with musculoskeletal conditions in the UK may be interested in learning about opportunities to participate in research whilst using digital technologies within the waiting room. The results suggest the need for choice regarding the presentation and format of information and whether it can be accessed at a later date at home.
IntroductionModern team science requires effective sharing of data and skills. The DPUK Data Portal is a collection of tools, datasets and networks that allows for epidemiologists and specialist ...researchers alike to access, analyse and investigate cohort and different modalities of routine data across UK and international sources.
Objectives and ApproachThe Portal is housed on an instance of UKSeRP (UK Secure eResearch Platform), that allows customisable infrastructure to be used for multi-modal research (thus far live in genetics, imaging and clinical data) for researchers across the world using remote access technology whilst allowing governance to remain with the data provider. A central team at Swansea University is responsible for data curation and processing, and runs an access procedure for researchers to apply to use data from multiple sources to be analysed in a central analysis environment. Other modalities are similarly hosted, with input from partner sites in Cardiff and Oxford.
ResultsDPUK facilitates data access and research on 49 cohorts, 40 UK-based and 9 international. The centralised repository model including remote access and ability to store and make available different modalities of data, from phenotypic data, to genetic and imaging data, has allowed DPUK to begin to support research of varying topics, from those studying cognitive decline and Dementia as a disease, to those maturing analytical models. By providing access to data platforms specialising in genetics, imaging and routine clinical data, as well as to specialists in disease and biology to aid with its understanding, DPUK has realised a large-scale research exercise combining major data modalities on a central platform, and allow access to such rich data across the world under an umbrella of robust governance.
Conclusion/ImplicationsGlobally, cohorts are pooling data, expertise and desire to enrich their own aims in partnership with a federated research community to enable in-depth scrutiny of the biological origins of dementia and the development and evaluation of novel approach to disease prevention and cure.
User feedback is crucial in the development of electronic self-monitoring tools for bipolar spectrum disorders (BSD). Previous studies have examined user experiences in small samples self-monitoring ...over relatively short time periods. We aimed to explore the experiences of a large sample of individuals with BSD engaged in long-term remote active electronic self-monitoring.
An online survey, containing closed and open questions, was sent to participants with BSD enrolled on the Bipolar Disorder Research Network (BDRN) True Colours mood-monitoring system. Questions related to experiences of using True Colours, including viewing mood graphs, and sharing data with healthcare professionals (HCPs) and/or family/friends.
Response rate was 62.7 % (n = 362). 88.4 % reported finding using True Colours helpful. Commonly reported benefits were having a visual record of mood changes, patterns/triggers and identifying early warning signs. Limitations included questions not being comprehensive or revealing anything new. One third had shared their graphs, with 89.9 % finding it helpful to share with HCPs and 78.7 % helpful to share with family/friends. Perceived benefits included aiding communication and limitations included lack of interest/understanding from others.
Responder bias may be present. Findings may not be generalisable to all research cohorts.
The majority of participants valued long-term self-monitoring. Personalisation and ease of use were important. A potential challenge is continued use when mood is long-term stable, highlighting the need for measures to be sensitive to small changes. Sharing self-monitoring data with HCPs may enhance communication of the lived experience of those with BSD. Future research should examine HCPs' perspectives.
•Benefits and limitations of long-term remote digital self-monitoring were assessed.•Participants: individuals with Bipolar Spectrum Disorders (BSD; N = 362)•Majority valued the tool; personalisation and ease of use were important.•Sharing BSD self-monitoring mood data with others may enhance communication.•Limitations: responder and reporting bias, small sample responses, generalisability
Background
Type A acute aortic dissection (TAAD) during pregnancy is a life‐threatening event for both the mother and the unborn baby. Pregnancy has been recognized as an independent risk factor for ...TAAD, postulated to be due to physiological changes that cause hyperdynamic circulation. This review seeks to outline the current controversies around this unique group.
Methods
A comprehensive literature search was carried out across large databases to assimilate relevant papers regarding acute aortic dissection in pregnant women.
Results
The presentation can be atypical in many cases and further concern from clinicians of fetal radiation exposure can result in missed or delayed diagnoses. Investigation via the quickest form of imaging, whether computed tomography, magnetic resonance imaging, or transesophageal echocardiography, should be carried out promptly due to the high risk of mortality. Surgical management of TAAD in pregnancy revolves primarily around the decision to deliver the fetus concomitantly or to perform the aortic repair with the fetus in utero.
Conclusions
Management of this group includes rapid and dynamic assessment without delay. From conception to postpartum, there are multiple stages in which to manage these women. Challenges in carrying out management in the form of operative techniques and cardiopulmonary bypass place the fetus at risk and must be approached with caution, particularly as there is little evidence‐base for many of these decisions. Further research into reducing maternal and fetal mortality is necessary.
The True Colours remote mood monitoring system was developed over a decade ago by researchers, psychiatrists, and software engineers at the University of Oxford to allow patients to report on a range ...of symptoms via text messages, Web interfaces, or mobile phone apps. The system has evolved to encompass a wide range of measures, including psychiatric symptoms, quality of life, and medication. Patients are prompted to provide data according to an agreed personal schedule: weekly, daily, or at specific times during the day. The system has been applied across a number of different populations, for the reporting of mood, anxiety, substance use, eating and personality disorders, psychosis, self-harm, and inflammatory bowel disease, and it has shown good compliance. Over the past decade, there have been over 36,000 registered True Colours patients and participants in the United Kingdom, with more than 20 deployments of the system supporting clinical service and research delivery. The system has been adopted for routine clinical care in mental health services, supporting more than 3000 adult patients in secondary care, and 27,263 adolescent patients are currently registered within Oxfordshire and Buckinghamshire. The system has also proven to be an invaluable scientific resource as a platform for research into mood instability and as an electronic outcome measure in randomized controlled trials. This paper aimed to report on the existing applications of the system, setting out lessons learned, and to discuss the implications for tailored symptom monitoring, as well as the barriers to implementation at a larger scale.
•Many healthcare organisations create and share ``clinical guidelines'' as standards of care.•The goal is to improve quality and safety of patient care and reduce waste and costs.•This documentation ...is often difficult to use and keep up to date; effect on practice is limited.•Executable guidelines offer situation- and patient-specific guidance at the point of care.•OpenClinical provides an end-to-end technology for creating and sharing executable guidelines.
It is well known that medical knowledge is growing so rapidly that it is difficult or impossible for healthcare professionals to keep up. More and more techniques for diagnosing and treating diseases are becoming available, yet new research findings and clinical practices are slow to spread. Information technology and the internet are providing important new ways of disseminating knowledge in healthcare as in many other domains. Knowledge engineering techniques for supporting decision-making and process management are also becoming available, and can be used to support busy clinicians, helping to ensure that their decisions are consistent with current knowledge and clinical procedures are carried out in a timely, efficient and safe way. The OpenClinical.net project is building on these techniques to demonstrate a new paradigm for disseminating knowledge and promoting best practice. The key idea is that much professional expertise can be modelled as computer-interpretable knowledge and used to assist decision-making, workflow management, communication and coordination of care and many other professional tasks. The central goal of OpenClinical.net is to demonstrate how this might be done at scale, through a form of “crowd sourcing”, in order to create and maintain a sharable knowledge base that is available in an open access and open source repository. This paper provides an overview of the project and a summary of progress to date.
Abstract
Introduction
To understand when knowledge objects in a computable biomedical knowledge library are likely to be subject to regulation as a medical device in the United Kingdom.
Methods
A ...briefing paper was circulated to a multi‐disciplinary group of 25 including regulators, lawyers and others with insights into device regulation. A 1‐day workshop was convened to discuss questions relating to our aim. A discussion paper was drafted by lead authors and circulated to other authors for their comments and contributions.
Results
This article reports on those deliberations and describes how UK device regulators are likely to treat the different kinds of knowledge objects that may be stored in computable biomedical knowledge libraries. While our focus is the likely approach of UK regulators, our analogies and analysis will also be relevant to the approaches taken by regulators elsewhere. We include a table examining the implications for each of the four knowledge levels described by Boxwala in 2011 and propose an additional level.
Conclusions
If a knowledge object is described as directly executable for a medical purpose to provide decision support, it will generally be in scope of UK regulation as “software as a medical device.” However, if the knowledge object consists of an algorithm, a ruleset, pseudocode or some other representation that is not directly executable and whose developers make no claim that it can be used for a medical purpose, it is not likely to be subject to regulation. We expect similar reasoning to be applied by regulators in other countries.
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