Chris Paton

Innovating to enhance clinical data management using non-commercial and open source solutions across a multi-center network supporting inpatient pediatric care and research in Kenya

Abstract Objective To share approaches and innovations adopted to deliver a relatively inexpensive clinical data management (CDM) framework within a low-income setting that aims to deliver quality pediatric data useful for supporting research, strengthening the information culture and informing improvement efforts in local clinical practice. Materials and methods The authors implemented a CDM framework to support a Clinical Information Network (CIN) using Research Electronic Data Capture (REDCap), a noncommercial software solution designed for rapid development and deployment of electronic data capture tools. It was used for collection of standardized data from case records of multiple hospitals’ pediatric wards. R, an open-source statistical language, was used for data quality enhancement, analysis, and report generation for the hospitals. Results In the first year of CIN, the authors have developed innovative solutions to support the implementation of a secure, rapid pediatric data collection system spanning 14 hospital sites with stringent data quality checks. Data have been collated on over 37 000 admission episodes, with considerable improvement in clinical documentation of admissions observed. Using meta-programming techniques in R, coupled with branching logic, randomization, data lookup, and Application Programming Interface (API) features offered by REDCap, CDM tasks were configured and automated to ensure quality data was delivered for clinical improvement and research use. Conclusion A low-cost clinically focused but geographically dispersed quality CDM (Clinical Data Management) in a long-term, multi-site, and real world context can be achieved and sustained and challenges can be overcome through thoughtful design and implementation of open-source tools for handling data and supporting research.

Ethical Considerations in Using Facebook for Health Care Support: A Case Study Using Concussion Management

Social networking sites (SNS) are now part of everyday life, and SNSs such as Facebook, YouTube, and Twitter are among the most accessed Web sites on the Internet. Although SNSs are primarily used for staying in touch with friends and family, they are increasingly being used for health‐related purposes for a variety of conditions, including concussion awareness. As health interventions begin to be more commonly provided through SNSs (particularly Facebook), ethical issues have been raised with regard to confidentiality, privacy, and trust; these issues need to be addressed. This article outlines some of the key considerations when providing a concussion intervention through Facebook and discusses potential solutions to these issues.

Building Learning Health Systems to Accelerate Research and Improve Outcomes of Clinical Care in Low- and Middle-Income Countries.

Mike English and colleagues argue that as efforts are made towards achieving universal health coverage it is also important to build capacity to develop regionally relevant evidence to improve healthcare.

An innovative team-based stop smoking competition among Māori and Pacific Island smokers: rationale and method for the study and its evaluation

BackgroundMāori and Pacific Island people have significantly higher smoking rates compared to the rest of the New Zealand population. The main aim of this paper is to describe how knowledge of Indigenous people’s practices and principles can be combined with proven effective smoking cessation support into a cessation intervention appropriate for Indigenous people.Methods/DesignA literature review was conducted to identify what cultural principles and practices could be used to increase salience, and what competition elements could have an impact on efficacy of smoking cessation. The identified elements were incorporated into the design of a cessation intervention.DiscussionCultural practices incorporated into the intervention include having a holistic family or group-centred focus, inter-group competitiveness, fundraising and ritual pledging. Competition elements included are social support, pharmacotherapy use, cash prize incentives and the use of a dedicated website and iPad application. A pre-test post-test will be combined with process evaluation to evaluate if the competition results in triggering mass-quitting, utilisation of pharmacotherapy and in increasing sustained smoking cessation and to get a comprehensive understanding of the way in which they contribute to the effect. The present study is the first to describe how knowledge about cultural practices and principles can be combined with proven cessation support into a smoking cessation contest. The findings from this study are promising and further more rigorous testing is warranted.

A systematic review of electronic audit and feedback: intervention effectiveness and use of behaviour change theory

BackgroundAudit and feedback is a common intervention for supporting clinical behaviour change. Increasingly, health data are available in electronic format. Yet, little is known regarding if and how electronic audit and feedback (e-A&F) improves quality of care in practice.ObjectiveThe study aimed to assess the effectiveness of e-A&F interventions in a primary care and hospital context and to identify theoretical mechanisms of behaviour change underlying these interventions.MethodsIn August 2016, we searched five electronic databases, including MEDLINE and EMBASE via Ovid, and the Cochrane Central Register of Controlled Trials for published randomised controlled trials. We included studies that evaluated e-A&F interventions, defined as a summary of clinical performance delivered through an interactive computer interface to healthcare providers. Data on feedback characteristics, underlying theoretical domains, effect size and risk of bias were extracted by two independent review authors, who determined the domains within the Theoretical Domains Framework (TDF). We performed a meta-analysis of e-A&F effectiveness, and a narrative analysis of the nature and patterns of TDF domains and potential links with the intervention effect.ResultsWe included seven studies comprising of 81,700 patients being cared for by 329 healthcare professionals/primary care facilities. Given the extremely high heterogeneity of the e-A&F interventions and five studies having a medium or high risk of bias, the average effect was deemed unreliable. Only two studies explicitly used theory to guide intervention design. The most frequent theoretical domains targeted by the e-A&F interventions included ‘knowledge’, ‘social influences’, ‘goals’ and ‘behaviour regulation‘, with each intervention targeting a combination of at least three. None of the interventions addressed the domains ‘social/professional role and identity’ or ‘emotion’. Analyses identified the number of different domains coded in control arm to have the biggest role in heterogeneity in e-A&F effect size.ConclusionsGiven the high heterogeneity of identified studies, the effects of e-A&F were found to be highly variable. Additionally, e-A&F interventions tend to implicitly target only a fraction of known theoretical domains, even after omitting domains presumed not to be linked to e-A&F. Also, little evaluation of comparative effectiveness across trial arms was conducted. Future research should seek to further unpack the theoretical domains essential for effective e-A&F in order to better support strategic individual and team goals.

I've got 99 problems but a phone ain't one: Electronic and mobile health in low and middle income countries

Mobile technology is very prevalent in Kenya—mobile phone penetration is at 88% and mobile data subscriptions form 99% of all internet subscriptions. While there is great potential for such ubiquitous technology to revolutionise access and quality of healthcare in low-resource settings, there have been few successes at scale. Implementations of electronic health (e-Health) and mobile health (m-Health) technologies in countries like Kenya are yet to tackle human resource constraints or the political, ethical and financial considerations of such technologies. We outline recent innovations that could improve access and quality while considering the costs of healthcare. One is an attempt to create a scalable clinical decision support system by engaging a global network of specialist doctors and reversing some of the damaging effects of medical brain drain. The other efficiently extracts digital information from paper-based records using low-cost and locally produced tools such as rubber stamps to improve adherence to clinical practice guidelines. By bringing down the costs of remote consultations and clinical audit, respectively, these projects offer the potential for clinics in resource-limited settings to deliver high-quality care. This paper makes a case for continued and increased investment in social enterprises that bridge academia, public and private sectors to deliver sustainable and scalable e-Health and m-Health solutions.

A user-centred home monitoring and self-management system for patients with heart failure: a multicentre cohort study

Aims Previous generations of home monitoring systems have had limited usability. We aimed to develop and evaluate a user-centred and adaptive system for health monitoring and self-management support in patients with heart failure. Methods and results Patients with heart failure were recruited from three UK centres and provided with Internet-enabled tablet computers that were wirelessly linked with sensor devices for blood pressure, heart rate, and weight monitoring. Patient observations, interviews, and concurrent analyses of the automatically collected data from their monitoring devices were used to increase the usability of the system. Of the 52 participants (median age 77 years, median follow-up 6 months [interquartile range, IQR, 3.6-9.2]), 24 (46%) had no, or very limited prior, experience with digital technologies. It took participants about 1.5 min to complete the daily monitoring tasks, and the rate of failed attempts in completing tasks was <5%. After 45 weeks of observation, participants still used the system on 4.5 days per week (confidence interval 3.2-5.7 days). Of the 46 patients who could complete the final survey, 93% considered the monitoring system as easy to use and 38% asked to keep the system for self-management support after the study was completed. Conclusion We developed a user-centred home monitoring system that enabled a wide range of heart failure patients, with differing degrees of IT literacy, to monitor their health status regularly. Despite no active medical intervention, patients felt that they benefited from the reassurance and sense of connectivity that the monitoring system provided.

Supporting heart failure patients through personalized mobile health monitoring

Heart failure is a common chronic condition requiring frequent attention and ongoing provision of healthcare services. In this context we present a personalized mobile-based home monitoring system aiming to support heart failure patients in daily self-monitoring of their condition. An Internet-linked tablet computer and various portable and wearable sensing devices are employed in order to monitor the patients physiological parameters and enable healthcare professionals to review patients status remotely. The proposed system supports the activation/deactivation of system functional components by healthcare professionals during run-time operation, the unobtrusive remote upgrade of the mobile system through a private application distribution channel, and the automatic recording of user interactions, in order to meet the patients ongoing individualized preferences and healthcare needs. Preliminary results from an observational cohort study indicate that heart failure patients find the proposed system acceptable and consider it useful for self-monitoring their condition.

The Privacy and Security Implications of Open Data in Healthcare.

Summary Objective:  The International Medical Informatics Association (IMIA) Open Source Working Group (OSWG) initiated a group discussion to discuss current privacy and security issues in the open data movement in the healthcare domain from the perspective of the OSWG membership. Methods:  Working group members independently reviewed the recent academic and grey literature and sampled a number of current large-scale open data projects to inform the working group discussion. Results:  This paper presents an overview of open data repositories and a series of short case reports to highlight relevant issues present in the recent literature concerning the adoption of open approaches to sharing healthcare datasets. Important themes that emerged included data standardisation, the inter-connected nature of the open source and open data movements, and how publishing open data can impact on the ethics, security, and privacy of informatics projects. Conclusions:  The open data and open source movements in healthcare share many common philosophies and approaches including developing international collaborations across multiple organisations and domains of expertise. Both movements aim to reduce the costs of advancing scientific research and improving healthcare provision for people around the world by adopting open intellectual property licence agreements and codes of practice. Implications of the increased adoption of open data in healthcare include the need to balance the security and privacy challenges of opening data sources with the potential benefits of open data for improving research and healthcare delivery.