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Patient Generated Data: Usefulness and Challenges
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Patient Generated Data: Usefulness and Challenges

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Digital Health".

Deadline for manuscript submissions: closed (24 March 2023) | Viewed by 4656

Special Issue Editors

Dr. Paulo de Carvalho

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Guest Editor
Department of Informatics Engineering, CISUC-Centre for Informatics and Systems of the University of Coimbra, University of Coimbra, P-3030-790 Coimbra, Portugal
Interests: signal and image processing; pattern recognition; medical informatics; eHealth
Dr. Rute Almeida

E-Mail Website
Guest Editor
Center for Health Technology and Services Research (CINTESIS), Faculty of Medicine, University of Porto, 4200-319 Porto, Portugal
Interests: mHealth; self-monitoring tools; respiratory sounds; signal processing techniques; along with modeling and statistical analysis to extract information and characterize biomedical signals
Dr. Ana Ferreira

E-Mail Website
Guest Editor
Center for Health Technology and Services Research (CINTESIS), Community Medicine, Department of Information and Health Decision Sciences, Faculty of Medicine of University of Porto, 4200-319 Porto, Portugal
Interests: information security; access control; security usability and HCI; socio-technical security; social engineering; eectronic patient records; patient's empowerment; risk analisys/assessment

Special Issue Information

Dear Colleagues,

The ubiquity of smartphones and easiness of connectivity creates an opportunity for collecting data produced and reported by their users, in particular in the framework of mobile health (mHealth) applications. Using that data to monitoring health and life style of patients, or persons at increased risk of disease, is a valuable resource for supporting the patients and contribute to a more efficient healthcare. Nevertheless, the data generated by patients presents specific challenges that this special issue intends to explore. Privacy risks may lead to objections from patients to authorize the use of their data, while incompleteness, imprecision and other quality problems may jeopardize their usefulness. Legal and ethical concerns must be attended to, and aspects regarding the secure transmission and storage, interoperability and sharing are also relevant. The design of tools promoting high quality data collection, while ensuring the security and privacy are crucial to increase the confidence of patients and healthcare teams, to both provide and use of patient generated data. 

Special interest in challenges related to:

  • Electronic Health Records fed by mHealth solutions
  • Quality and reliability of data retrieved from mobile applications and social media
  • Monitoring and health managing systems based on patient generated data
  • Informed consent management in mHealth data collection
  • Security and privacy of personal data produced by the patient, including especially sensitive data as health information
  • Secondary use of Patient generated data

The submission of other related topics is welcome, and can be discussed with the Guest Editors.

Dr. Paulo de Carvalho
Dr. Rute Almeida
Dr. Ana Ferreira
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • patient-generated data
  • electronic health records
  • mHealth
  • health monitoring
  • informed consent
  • security and privacy of personal data
  • secondary use data

Published Papers (2 papers)

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Research

13 pages, 1332 KiB  
Article
Evaluating Drivers of the Patient Experience Triangle: Stress, Anxiety, and Frustration
by Sumaya Almaazmi, Mecit Can Emre Simsekler, Andreas Henschel, Abroon Qazi, Dounia Marbouh and Rana Adel Mahmoud Ali Luqman
Int. J. Environ. Res. Public Health 2023, 20(7), 5384; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph20075384 - 04 Apr 2023
Cited by 1 | Viewed by 1571
Abstract
Patient experience is a widely used indicator for assessing the quality-of-care process during a patient’s journey in hospital. However, the literature rarely discusses three components: patient stress, anxiety, and frustration. Furthermore, little is known about what drives each component during hospital visits. In [...] Read more.
Patient experience is a widely used indicator for assessing the quality-of-care process during a patient’s journey in hospital. However, the literature rarely discusses three components: patient stress, anxiety, and frustration. Furthermore, little is known about what drives each component during hospital visits. In order to explore this, we utilized data from a patient experience survey, including patient- and provider-related determinants, that was administered at a local hospital in Abu Dhabi, UAE. A machine-learning-based random forest (RF) algorithm, along with its embedded importance analysis function feature, was used to explore and rank the drivers of patient stress, anxiety, and frustration throughout two stages of the patient journey: registration and consultation. The attribute ‘age’ was identified as the primary patient-related determinant driving patient stress, anxiety, and frustration throughout the registration and consultation stages. In the registration stage, ‘total time taken for registration’ was the key driver of patient stress, whereas ‘courtesy demonstrated by the registration staff in meeting your needs’ was the key driver of anxiety and frustration. In the consultation step, ‘waiting time to see the doctor/physician’ was the key driver of both patient stress and frustration, whereas ‘the doctor/physician was able to explain your symptoms using language that was easy to understand’ was the main driver of anxiety. The RF algorithm provided valuable insights, showing the relative importance of factors affecting patient stress, anxiety, and frustration throughout the registration and consultation stages. Healthcare managers can utilize and allocate resources to improve the overall patient experience during hospital visits based on the importance of patient- and provider-related determinants. Full article
(This article belongs to the Special Issue Patient Generated Data: Usefulness and Challenges)
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19 pages, 458 KiB  
Article
“Not Sure Sharing Does Anything Extra for Me”: Understanding How People with Cardiovascular Disease Conceptualize Sharing Personal Health Data with Peers
by Jhon Adrián Cerón-Guzmán, Daniel Tetteroo, Jun Hu and Panos Markopoulos
Int. J. Environ. Res. Public Health 2022, 19(15), 9508; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159508 - 02 Aug 2022
Cited by 1 | Viewed by 2115
Abstract
As people deal with cardiovascular disease (CVD), they are to self-monitor routinely and be aware of complications and the corresponding course of action. Engaging in these self-care behaviors is conducive to gaining knowledge of health status. Even so, knowledge of the self may [...] Read more.
As people deal with cardiovascular disease (CVD), they are to self-monitor routinely and be aware of complications and the corresponding course of action. Engaging in these self-care behaviors is conducive to gaining knowledge of health status. Even so, knowledge of the self may be insufficient in making sense of chronic conditions. In constructing a new normal after health-related life disruptions, people often turn to peers (others facing similar health issues) and share personal health information with each other. Although health information-sharing behavior is well-documented, it remains underexplored what attitudes individuals with chronic conditions, such as CVD, have toward disclosing personal health data to peers and exploring those of others with similar conditions. We surveyed 39 people who reported being diagnosed with CVD to understand how they conceptualize sharing personal health data with their peers. By analyzing qualitative survey data thematically, we found that respondents expressed themselves as uncertain about the benefits of interacting with peers in such a manner. At the same time, they recognized an opportunity to learn new ideas to enhance CVD self-care in mutual data sharing. We also report participants’ analytical orientation toward this sort of data sharing herein and elaborate on what sharing a range of personal health data could mean. In light of the existing literature, this study unpacks the notion of sharing in a different population/pathology and with more nuance, particularly by distinguishing between disclosing one’s data and exploring others’. Full article
(This article belongs to the Special Issue Patient Generated Data: Usefulness and Challenges)
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