The Vision of Personally Managed Health Data: Barriers, Approaches and Roadmap for the Future

Due date for submissions: September 30, 2018

Advancements in healthcare practice, limitations of traditional healthcare processes, and the need for flexible access to health information have created an ever-growing demand for electronic health data systems. One element in this trend has been systems collecting and managing personal health data for individuals. Those systems provide citizens and patients with the ability to become more active in managing their own care, to combine data from multiple sources, and to assist individuals with the organization and interpretation of their own health and illness experiences. Through such systems, patients are able to provide daily life-status information, to maintain their own records of medical exams, and to define the access rights to their personal data, leveraging that access to improve their personal health and to manage any diseases that may affect them.

Despite their tangible benefits, existing systems collect and exploit only limited, fragmented information, not unveiling their real potential. Their uptake has been slow mainly due to the lack of usability, integration, and interoperability [6] as well as challenges related to ethical and security considerations and to the implementation of added-value services [1, 2]. Most of the developed systems are trying to cover either very limited or an extremely wide set of clinical parameters and health-related uses, failing to provide appropriately usable, clean, and simple interfaces, ignoring also the cognitive issues in the design and use of such systems [7,9]. Ethical and security issues have limited the integration with other service providers and electronic health records (EHRs) [3], and there are challenges related to acceptable methods for sharing information among patients, relatives, friends, physicians, and researchers [4, 5]. The lack of trust, the inefficient access control, and often inadequate security mechanisms on these systems complicate their adoption, whereas the benefit of added-value services that leverage the collected information is not always obvious [1,2,10].

There is, however, a growing interest in citizen/patient empowerment and an increasing availability of mature technologies for hosting extensible and secure health services. In addition, with the prevalence of mobile health applications [8], there is a robust interest by individuals regarding the use of personal health applications [4]. We accordingly are seeking special issue papers that explore in depth new methodological approaches for overcoming barriers to the adoption of personal health systems and other forms of patient-centered medical record systems.

Examples of potential topics for contributions to this issue include, but are not limited to, novel methodologies or approaches for tackling the following issues:

Novel architectures and delivery platforms for personal health data Analyses of barriers to the adoption of systems collecting, managing and analyzing personal health data Scalability and performance, e.g., using cloud infrastructures Interoperability, data ingestion, and integration Aspects of data cleaning, curation, and quality control Approaches to security, anonymization and pseudonymization Compliance with legal and ethical constraints National infrastructures and cross-border support
The issue will focus on original methodological research papers in these and related areas. It may also include one or more survey papers designed to provide an overview of methodologic research developments in broader fields of personal health data management. We accordingly urge the preparation and submission of methodological review papers on topics that are relevant to the theme of this special issue. We are also interested in commentaries and special communications, which are discussed under Aims and Scope on JBI’s home page at www.journals.elsevier.com/journal-of-biomedical-informatics. Specific applications can be described to motivate the methodology being introduced, but papers that focus solely on a specific application are not suitable for JBI.

Peer-Review Process

All submitted papers will go through a rigorous peer-review process with at least two reviewers. The acceptance process for original research papers will focus on those manuscripts that address innovative theories and methods that will support the evolution of PHRs and related issues. All submissions should follow the guidelines for authors available through a link on the Journal of Biomedical Informatics home page noted above. JBI’s editorial policy (Aims and Scope) is also outlined on that page and will be strictly followed by special issue reviewers.

Submission Process

Authors must submit their paper via the online Elsevier Editorial System (EES) at http://ees.elsevier.com/jbi by September 30, 2018. Authors can register and upload their text, tables, and figures as well as subsequent revisions through this website. Potential authors may contact the Publishing Services Coordinator in the journal’s editorial office (jbi@elsevier.com) for questions regarding this process. When asked for the category of their submission, they should indicate that it is for the special issue on Personal Health Records. Cover letters should indicate whether the paper is intended as an original research paper, methodological review, commentary, or special communication. Questions about papers and their suitability for the special issue may be directed to kondylak@ics.forth.gr.

References

[1] Genitsaridi, I., Kondylakis, H., Koumakis, L., et al. Evaluation of personal health record systems through the lenses of EC research projects. Comp. in Bio. and Med. 2015;59: 175-185.

[2] Katehakis, D.G, Kondylakis, H., Lefteris Koumakis, et al. Integrated Care Solutions for the Citizen: Personal Health Record Functional Models to support Interoperability, European Journal for Biomedical Informatics (EJBHI) , 2017;13(1):41-56.

[3] Kondylakis, H., Koumakis, L., Hänold, S., et al. Donor's support tool: Enabling informed secondary use of patient's biomaterial and personal data. Int J Med Inform 2017;97: 282-292.

[4] Kondylakis, H., Claerhout, B., Mehta, K., et al. The INTEGRATE project: Delivering solutions for efficient multi-centric clinical research and trials. J Biomed Inform 2016;62: 32-47.

[5] Bouayad, L., Ialynytchev, A., Padmanabhan, B. Patient Health Record Systems Scope and Functionalities: Literature Review and Future Directions, J Med Internet Res 2017;19(11):e388.

[6] Gay, V., Leijdekkers, P. Bringing Health and Fitness Data Together for Connected Health Care: Mobile Apps as Enablers of Interoperability, J Med Internet Res 2015;17(11):e260.

[7] Hardy, J., Veinot, T.C., Yan, X., Berrocal, V.J., Clarke, P., Goodspeed, R., Gomez-Lopez, I.N, Romero, D., Vinod Vydiswaran, V.G. User acceptance of location-tracking technologies in health research: Implications for study design and data quality, J Biomed Inform 2018;79:7-19.

[8] Cornet, V.P., Holden, R.J. Systematic review of smartphone-based passive sensing for health and wellbeing, J Biomed Inform 2018;77:120-132.

[9] Russ, A.L, Saleem, J.J, Ten factors to consider when developing usability scenarios and tasks for health information technology, J Biomed Inform 2018;78:123-133.

[10] Johnson, C.M., McIlwain, S., Gray, O., Willson, B., Vorderstrasse, A. Creating a sustainable collaborative consumer health application for chronic disease self-management, J Biomed Inform 2017;71:198-206.

Guest Editors

Haridimos Kondylakis
Computational Biomedicine Laboratory
Foundation for Research and Technology-Hellas (FORTH)
Heraklion, Greece
Email: kondylak@ics.forth.gr

Lefteris Koumakis
Computational Biomedicine Laboratory
Foundation for Research and Technology-Hellas (FORTH)
Heraklion, Greece
Email: koumakis@ics.forth.gr

Manolis Tsiknakis
Biomedical Informatics and eHealth lab
Department of Informatics Engineering, TEI Crete
Heraklion, Greece
Email: tsiknakis@ics.forth.gr

Stephan Kiefer
Institute for Biomedical Engineering
Fraunhofer Institute for Biomedical Engineering
St. Ingbert, Germany
Email: Stephan.Kiefer@ibmt.fraunhofer.de