Passive data collection and use in healthcare: A systematic review of ethical issues

2019 ◽  
Vol 129 ◽  
pp. 242-247 ◽  
Author(s):  
Nicole A. Maher ◽  
Joeky T. Senders ◽  
Alexander F.C. Hulsbergen ◽  
Nayan Lamba ◽  
Michael Parker ◽  
...  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sujen Man Maharjan ◽  
Anubhuti Poudyal ◽  
Alastair van Heerden ◽  
Prabin Byanjankar ◽  
Ada Thapa ◽  
...  

Abstract Background Passive sensor data from mobile devices can shed light on daily activities, social behavior, and maternal-child interactions to improve maternal and child health services including mental healthcare. We assessed feasibility and acceptability of the Sensing Technologies for Maternal Depression Treatment in Low Resource Settings (StandStrong) platform. The StandStrong passive data collection platform was piloted with adolescent and young mothers, including mothers experiencing postpartum depression, in Nepal. Methods Mothers (15–25 years old) with infants (< 12 months old) were recruited in person from vaccination clinics in rural Nepal. They were provided with an Android smartphone and a Bluetooth beacon to collect data in four domains: the mother’s location using the Global Positioning System (GPS), physical activity using the phone’s accelerometer, auditory environment using episodic audio recording on the phone, and mother-infant proximity measured with the Bluetooth beacon attached to the infant’s clothing. Feasibility and acceptability were evaluated based on the amount of passive sensing data collected compared to the total amount that could be collected in a 2-week period. Endline qualitative interviews were conducted to understand mothers’ experiences and perceptions of passive data collection. Results Of the 782 women approached, 320 met eligibility criteria and 38 mothers (11 depressed, 27 non-depressed) were enrolled. 38 mothers (11 depressed, 27 non-depressed) were enrolled. Across all participants, 5,579 of the hour-long data collection windows had at least one audio recording [mean (M) = 57.4% of the total possible hour-long recording windows per participant; median (Mdn) = 62.6%], 5,001 activity readings (M = 50.6%; Mdn = 63.2%), 4,168 proximity readings (M = 41.1%; Mdn = 47.6%), and 3,482 GPS readings (M = 35.4%; Mdn = 39.2%). Feasibility challenges were phone battery charging, data usage exceeding prepaid limits, and burden of carrying mobile phones. Acceptability challenges were privacy concerns and lack of family involvement. Overall, families’ understanding of passive sensing and families’ awareness of potential benefits to mothers and infants were the major modifiable factors increasing acceptability and reducing gaps in data collection. Conclusion Per sensor type, approximately half of the hour-long collection windows had at least one reading. Feasibility challenges for passive sensing on mobile devices can be addressed by providing alternative phone charging options, reverse billing for the app, and replacing mobile phones with smartwatches. Enhancing acceptability will require greater family involvement and improved communication regarding benefits of passive sensing for psychological interventions and other health services. Registration International Registered Report Identifier (IRRID): DERR1-10.2196/14734


2012 ◽  
Vol 01 (07) ◽  
pp. 72-82
Author(s):  
Nanik Ram ◽  
Immamuddin Khoso ◽  
Muhammad Bachal Jamali ◽  
Faiz.M. Shaikh

This research addressed the ethical issues in Private Commercial Banks in Pakistan. Data were collected from 500 respondents/Customers from cross sectional data by using simple random technique and data were analyses by using SPSS-18 version. A structural questionnaire was used as basic tool for data collection, analysis, validity and reliability. It was revealed that private commercial banks are not caring for the customers specially, four old Banks UBL, HBL, MCB, ABL. It was further concluded that most of the staff members who interact with the customers is non MBAs so that’s why their attitude towards the customers are not friendly.


2015 ◽  
Vol 10 (1) ◽  
pp. 95
Author(s):  
Elizabeth Margaret Stovold

A Review of: Perrier, L., Farrell, A., Ayala, A. P., Lightfoot, D., Kenny, T., Aaronson, E., . . . Weiss, A. ( 2014). Effects of librarian-provided services in healthcare settings: A systematic review. Journal of the American Medical Informatics Association, 21(6), 1118-1124. http://dx.doi.org/10.1136/amiajnl-2014-002825 Abstract Objective – To assess the effects of librarian-provided services, in any healthcare setting, on outcomes important to patients, healthcare providers, and researchers. Design – Systematic review and narrative synthesis. Setting – MEDLINE, CINAHL, ERIC, LISA, and CENTRAL databases; library-related websites, conference proceedings, and reference lists of included studies. Subjects – Twenty-five studies identified through a systematic literature search. Methods – In consultation with the review team, a librarian designed a search to be run in MEDLINE that was peer-reviewed against a published checklist. The team then conducted searches in the five identified databases, adapting the search as appropriate for each database. Authors also checked the websites of library and evidence based healthcare organisations, along with abstracts of relevant conference proceedings, to supplement the electronic search. Two authors screened the literature search results for eligible studies, and reached agreement by consensus. Studies of any librarian-delivered service in a healthcare setting, directed at either patients, clinicians of any type, researchers, or students, along with studies reporting outcomes relevant to clinicians, patients, or researchers, were eligible for inclusion. The authors assessed results initially on the titles and abstracts, and then on the full-text of potentially relevant reports. The data from included studies were then extracted into a piloted data extraction form, and each study was assessed for quality using the Cochrane EPOC risk of bias tool or the Newcastle-Ottawa scale. The results were synthesised narratively. Main Results – The searches retrieved a total of 25 studies that met the inclusion criteria, comprised of 22 primary papers and 3 companion reports. Authors identified 12 randomised trials, 4 controlled before-and-after studies, 3 cohorts, 2 non-randomised trials, and 1 case-control study. They identified three main categories of intervention: librarians teaching search skills; providing literature searching as a service; and a combination of the teaching and provision of search services. The interventions were delivered to a mix of trainees, clinicians, and students. None of the studies examined services delivered directly to patients or to researchers. The quality assessment found most of the studies had a mid- to high-risk of bias due to factors such as lack of random sequence generation, a lack of validated tools for data collection, or a lack of statistical analysis included in the study. Two studies measured patient relevant outcomes and reported that searches provided by librarians to clinicians had a positive impact on the patient’s length of stay in hospital. Five studies examined the effect of librarian provided services on outcomes important to clinicians, such as whether a literature search influenced a clinical decision. There was a trend towards a positive effect, although two studies found no significant difference. The majority of studies investigated the impact of training delivered to trainees and students on their literature search skills. Twelve of these studies found a positive effect of training on the recipients’ search skills, while three found no difference. The secondary outcomes considered by this review were satisfaction with the service (8 studies), relevance of the answers provided by librarians (2), and cost (3). The majority reported good satisfaction, and relevance. A cost benefit was found in 2 of 3 studies that reported this outcome. Conclusion – Authors report a positive effect of training on the literature search skills of trainees and students, and identified a benefit in the small number of studies that examined librarian services to clinicians. Future studies should use validated data collection tools, and further research should be conducted in the area of services provided to clinicians. Research is needed on the effect of librarian-provided services to patients and researchers as no studies meeting the inclusion criteria examining these two groups were identified by the literature search.


2017 ◽  
Vol 1 (1) ◽  
Author(s):  
M. H Badii ◽  
A. R. Pazhakh ◽  
José Luis Abreu Quintero ◽  
R Foroughbakhch

Palabras claves: Ciencia, ECOEE, investigación, métodosResumen. El objetivo de esta obra no radica en realizar una búsqueda exhaustiva de la literatura en el tema, sino, sentar las bases del método científico, notando los aspectos filosóficos e éticos de la ciencia. Se presentan los conceptos y definiciones fundamentales relacionados con la metodología de la investigación científica. Se maneja el concepto de la toma de los datos válidos como un requisito básico en cualquier trabajo científico. Se pone a disposición del lector un modelo denominado el ECOEE que es una herramienta poderosa para establecer puntos de comparación e discusión entre los resultados de diferentes trabajos científicos. Finalmente, ofrece unas sugerencias de que hacer o no hacer en cuanto a realizar un trabajo de investigación.Key words: ECOEE, methods, research, Science Abstract.The aim of this paper is not to conduct a thorough literature search on the subject material, but to stress the fundamentals of the scientific methodology along with the philosophical and ethical issues thereof. The basic concepts and definitions in relation to research methodology are presented. The concept of data collection as a basic requisite in any scientific work is discussed. The ECOEE model as a strong tool in establishing different points of view and comparison among the results of different scientific works are laid out. Finally, some tips and suggestions are given as what to do or to avoid in conducting scientific research.


2021 ◽  
Author(s):  
Szilvia Zörgő ◽  
Gjalt - Jorn Ygram Peters ◽  
Clare Porter ◽  
Marcia Moraes ◽  
Savannah Donegan ◽  
...  

Quantitative Ethnography is a nascent field now formulating the specifics of its conceptual framework and terminology for a unified, quantitative – qualitative methodology. Our living, systematic review aims to shed light on decisions in research design that the community has made thus far in the domain of data collection, coding &amp; segmentation, analysis, and how Quantitative Ethnography as a methodology is conceptualized. Our analysis intends to spur discussions on these issues within the community and help establish a lingua franca.


2021 ◽  
pp. medethics-2020-107024
Author(s):  
Tom Sorell ◽  
Nasir Rajpoot ◽  
Clare Verrill

This paper explores ethical issues raised by whole slide image-based computational pathology. After briefly giving examples drawn from some recent literature of advances in this field, we consider some ethical problems it might be thought to pose. These arise from (1) the tension between artificial intelligence (AI) research—with its hunger for more and more data—and the default preference in data ethics and data protection law for the minimisation of personal data collection and processing; (2) the fact that computational pathology lends itself to kinds of data fusion that go against data ethics norms and some norms of biobanking; (3) the fact that AI methods are esoteric and produce results that are sometimes unexplainable (the so-called ‘black box’problem) and (4) the fact that computational pathology is particularly dependent on scanning technology manufacturers with interests of their own in profit-making from data collection. We shall suggest that most of these issues are resolvable.


Open Medicine ◽  
2014 ◽  
Vol 9 (3) ◽  
pp. 513-527 ◽  
Author(s):  
Philip Wahlster ◽  
Shane Scahill ◽  
Sanjay Garg ◽  
Zaheer-Ud-Din Babar

AbstractObjective: To identify the viewpoints and perceptions of different stakeholders regarding high cost medicines (HCMs). Methods: A systematic review of the literature was performed to identify original research articles. Using predefined categories, data related to the viewpoints of different stakeholders was systematically extracted and analyzed. Results: Thirty seven original research articles matched the criteria. The main stakeholders identified include physicians, patients, public and health funding authorities. The influence of media and other economic and ethical issues were also identified in the literature. A large number of stakeholders were concerned about lack of access to HCMs. Physicians have difficulty balancing the the rational use of expensive drugs while at the same time acting as “patients’ advocate”. Patients would like to know about all treatment options, even if they may not be able to afford them. The process and criteria for reimbursement should be transparent and access has to be equitable across patient groups. Conclusion: Access to HCMs could be improved through transparency and involvement of all stakeholders, especially patients and the public. Moral issues and the “rule of rescue” could influence decision-making process significantly. At system level, objectivity is important to ensure that the system is equitable and transparent.


2018 ◽  
Vol 29 (1) ◽  
pp. 149-156 ◽  
Author(s):  
Laetitia Ricci ◽  
Jean-Baptiste Lanfranchi ◽  
Fabienne Lemetayer ◽  
Christine Rotonda ◽  
Francis Guillemin ◽  
...  

A systematic review of articles using qualitative methods to generate questionnaire items identified in MEDLINE and PsycINFO from 2000 to 2014 was carried out. Articles were analyzed for (a) year of publication and journal domain, (b) qualitative data collection methods, (c) method of data content analysis, (d) professional experts’ input in item generation, and (e) debriefing of the newly developed items. In total, 371 articles were included and results showed (a) an acceleration of published articles, (b) individual interviews and focus groups were common ways of generating items and no emergent approach was identified, (c) the content analysis was usually not described (43% of articles), (d) experts were involved in eliciting concepts in less than a third of articles, (e) 61% of articles involved a step of further submission of newly developed items to the population of interest. This review showed an insufficient reporting of qualitative methods used to generate new questionnaires despite previous recommendations.


2021 ◽  
Author(s):  
Yatharth Ranjan ◽  
Malik Althobiani ◽  
Joseph Jacob ◽  
Michele Orini ◽  
Richard Dobson ◽  
...  

BACKGROUND Chronic Lung disorders like COPD and IPF are characterised by exacerbations which are a significant problem: unpleasant for patients, and sometimes severe enough to cause hospital admission (and therefore NHS pressures) and death. Reducing the impact of exacerbations is very important. Moreover, due to the COVID-19 pandemic, the vulnerable populations with these disorders are at high risk and hence their routine care cannot be done properly. Remote monitoring offers a low cost and safe solution of gaining visibility into the health of people in their daily life. Thus, remote monitoring of patients in their daily lives using mobile and wearable devices could be useful especially in high vulnerability groups. A scenario we consider here is to monitor patients and detect disease exacerbation and progression and investigate the opportunity of detecting exacerbations in real-time with a future goal of real-time intervention. OBJECTIVE The primary objective is to assess the feasibility and acceptability of remote monitoring using wearable and mobile phones in patients with pulmonary diseases. The aims will be evaluated over these areas: Participant acceptability, drop-out rates and interpretation of data, Detection of clinically important events such as exacerbations and disease progression, Quantification of symptoms (physical and mental health), Impact of disease on mood and wellbeing/QoL and The trajectory-tracking of main outcome variables, symptom fluctuations and order. The secondary objective of this study is to provide power calculations for a larger longitudinal follow-up study. METHODS Participants will be recruited from 2 NHS sites in 3 different cohorts - COPD, IPF and Post hospitalised Covid. A total of 60 participants will be recruited, 20 in each cohort. Data collection will be done remotely using the RADAR-Base mHealth platform for different devices - Garmin wearable devices, smart spirometers, mobile app questionnaires, surveys and finger pulse oximeters. Passive data collected includes wearable derived continuous heart rate, SpO2, respiration rate, activity, and sleep. Active data collected includes disease-specific PROMs, mental health questionnaires and symptoms tracking to track disease trajectory in addition to speech sampling, spirometry and finger Pulse Oximetry. Analyses are intended to assess the feasibility of RADAR-Base for lung disorder remote monitoring (include quality of data, a cross-section of passive and active data, data completeness, the usability of the system, acceptability of the system). Where adequate data is collected, we will attempt to explore disease trajectory, patient stratification and identification of acute clinically interesting events such as exacerbations. A key part of this study is understanding the potential of real-time data collection, here we will simulate an intervention using the Exacerbation Rating Scale (ERS) to acquire responses at-time-of-event to assess the performance of a model for exacerbation identification from passive data collected. RESULTS RALPMH study provides a unique opportunity to assess the use of remote monitoring in the study of lung disorders. The study is set to be started in mid-May 2021. The data collection apparatus, questionnaires and wearable integrations have been set up and tested by clinical teams. While waiting for ethics approval, real-time detection models are currently being constructed. CONCLUSIONS RALPMH will provide a reference infrastructure for the use of wearable data for monitoring lung diseases. Specifically information regarding the feasibility and acceptability of remote monitoring and the potential of real-time remote data collection and analysis in the context of chronic lung disorders. Moreover, it provides a unique standpoint to look into the specifics of novel coronavirus without burdensome interventions. It will help plan and inform decisions in any future studies that make use of remote monitoring in the area of Respiratory health. CLINICALTRIAL https://www.isrctn.com/ISRCTN16275601


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