A fundamental paradigm shift to patient-centric health services is needed to meet the challenges such as increasing healthcare costs, ageing population, and unhealthy lifestyles. Designing patient-centric services is challenging because of medical- and health data heterogeneity and lack of standardization for Personal Health Records (PHR). Further, designing patient-centric systems, especially in healthcare is a challenge as they are in uenced by emotions when users are in uenced by emotions triggered by privacy issues. In this study, we focus on the engineering method to design a patient-centric system that considers medicaldata heterogeneity and emotional security issues. We plan to develop a methodology for designing a patient-centric system with a multi-agent system (MAS) approach where agents operate with smart contracts. An emotional security framework is integrated into the design of such systems. Multi-faceted validation and veri cation are used to evaluate the engineered method. A framework for Evaluation in Design Science Research (FEDS) is used to de ne the evaluation activities and tools.
Health information technology has the potential to improve medical quality,
patient safety, educational resources and patient-physician communication while
decreasing costs [
measurement, public health surveillance, and patient access to data about their
illness [
The main purpose of Personal Health Records (PHR) is that a patient is the author and owner of his/her medical data that can be shared with other individuals, including healthcare professionals, or automated clinical decision-support services. The growing amount of personal data available increases the role of patient-centric systems in healthcare. In contrast, Electronic Health Records (EHR) are created and owned by healthcare providers.
The complexity of data analysis, processing and security increases together with the number of di erent healthcare systems. Another problem is that the data is created by healthcare professionals and based on disease episodes that are only a part of the patients' health-related data and history. For example, several patients with chronic conditions measure their blood pressure, or blood glucose regularly while these data sets are not stored in the context of EHR and thus, limiting their future use.
Design and development of patient-centric systems are challenging because users are in uenced by emotions triggered by privacy issues. As users are not forced to use such software, these issues lead to adoption failure, e.g., individuals do not trust to share their sensitive medical data with an application that does not provide transparency of personal data usage.
The importance for a healthcare domain is related to the possibility of sharing PHR between di erent stakeholders. Individuals could manage their own data and share it with healthcare providers and other stakeholders such as medical researchers, health insurance providers, and automated Clinical Decision Support Systems (CDSS). Additional medical data available to healthcare provider enables the provision of personalized guidelines to a patient. Personalized guidelines help patients to understand how to achieve their goals. On the other hand, the availability of CDSS reduces the number of people requiring direct contact with a doctor and increases the accessibility of medical services to people who really need it. Further, researchers gain access to personal medical data.
In this research, we focus on the PHR usage in the healthcare processes and involvement of patients as main responsible stakeholders by engineering a method for designing decentralized patient-centric systems. The main proposed method's concepts are: the number of healthcare processes is not limited; trust, transparency and in uence of patient's emotions during medical data sharing are essential for the usage of such a system; medical data heterogeneity is unavoidable.
To enable these main concepts we use di erent techniques: Multi Agent Systems (MAS) to support an unlimited number of healthcare processes, smart contracts are used by both human and non-human agents to enable trust and transparency while sharing PHR, embedding emotional security framework in the MAS design phase to avoid negative emotions while using such a system. The ontology is used to describe medical data integration processes between di erent agents.
The remainder of the paper is structured as follows. Section 2 presents related work and Section 3 describes the problem statement as well as our contributions. Next, Section 4 presents the design-science research method research actions in details and Section 5 references the conference paper as initial results used as a basis for the current research. Section 6 provides the evaluation plan for designed methodology, Section 7 concludes the paper together with providing directions for future research. In a nal Section 8 acknowledgements to supervisors are presented. 2
Literature review [
The role of emotions and associated quality goals that in uence the adoption
and e ective use of socio-technical systems is detailed in research [
Healthcare services become more expensive and their accessibility to patients decreases. Patient-centric healthcare systems enable PHR data collection and processing by CDSS and often do not require physical contact between patient and doctor. The PHR and EHR integration requires a solution for medical data heterogeneity as PHR does not have common data standard. The processing of integrated PHR and EHR needs to be transparent for patients so they adopt the patient-centric system. In this paper, we ll two gaps: (1) the integration process of PHR and EHR; (2) and embedding an emotional security framework into the design of patient-centric systems. In the scope of integrated healthcare, there are di erent main stakeholders: individuals, researchers that use medical data, healthcare professionals, state organizational units as statistics and social departments, and insurance companies.
We develop a methodology for patient-centric systems design. The methodology includes an emotional attachment framework to engage users and alleviate the users from feeling a negative emotion such as distrust, lack of ownership private and con dential data. Lack of transparency in health data processing leads to negative feelings for an individual. Target users for this methodology are IT architects and designers because there is no current methodology in IT for designing patient-centric systems.
Our planned contribution is a methodology for the design of dynamic PHR and EHR integration processes. We plan to use intelligent agents in MAS and smart contracts for sharing PHR. Intelligent agents are used for PHR collection from personal devices and can provide feedback based on the collected data analysis while blockchains provide transparency of PHR usage to the patient. To eliminate emotional security risks, we expand traditional functional and nonfunctional requirements of software system with emotional ones.
The main research question is how to dynamically merge and process integrated PHR and EHR in the cross-organizational processes of the patient-centric, decentralized healthcare system? To answer this question, a number of challenges (sub-questions) need to be addressed.
The rst sub-question is how to collect and process PHR data in the context of integrated healthcare to improve the quality of diagnostics and cures? To answer this question, we focus on the dynamic integration of EHR and PHR considered from a process-based point of view. After de ning the dynamic integration process, we turn to the shared cross-organizational processes.
The second sub-question is how to specify cross-organizational processes for handling EHR and PHR in a dynamic and secure way in a distributed patientcentric systems? The dynamic integration of EHR with PHR and the embedded emotional security framework enables the e ective adoption and usage of integrated data in a di erent number of e-services. Smart contracts used by intelligent agents in multi-agent systems (MAS) eliminate trust issues between stakeholders while providing a patient with PHR and EHR data security.
As the security of personal data is a very sensitive and important topic, the
third research question is how to perform a privacy-aware analysis of integrated
PHR and EHR in the context of the cross-organizational process in a distributed
patient-centric system? The privacy aware protocol [
For this research, the design-science research method is considered. This method
is solution-oriented and requires the creation of an innovative, purposeful artifact
for a special problem domain [
For designing dynamic integration processes, the requirements for PHR data
collection are de ned. The ontology for the PHR and EHR data integration and
the integration process ow are presented. The requirements are de ned with
the Agent-Oriented Modelling (AOM) approach as in [
The processing of integrated EHR and PHR requires an ontology de nition
to reduce semantic- and syntactic heterogeneity. An ontology for the dynamic
integration process is designed using the Protege tool3 together with the Web
Ontology Language (OWL)4. OWL is used to describe taxonomies and classi
cation networks. An evaluation of the ontology is performed with the HermiT5
reasoner that is based on a novel hypertableau calculus [
We describe the PHR and EHR integration process with the Business Process
Model and Notation (BPMN) [
For the evaluation of de ned integration process of PHR and EHR, we build a
formal Colored Petri Nets (CPN) model in order to detect and eliminate eventual
design aws, missing speci cations, security and privacy issues [
To de ne the cross-organizational processes where medical data is used by
different human- and non-human agents, rst intelligent BDI agents are described
as they o er a straightforward formalization of reasoning human agents with
intuitive concepts (beliefs, desires, and intentions) that closely match human
reasoning[
We de ne best practices for designing decentralized healthcare systems by integrating smart contracts in the communication layer between di erent nonhuman agents involved in the cross-organization process. To describe non-human BDI agents, ontology built for the integration process in the previous step is extended using OWL and validate it with HermiT reasoner.
Emotional requirements for PHR handling and sharing processes are included
in the early stages of the PHR and EHR data integration. The emotional
framework [
To meet our goal of designing the architecture of a patient-centric system, three milestones are de ned. First, the design of collecting and processing the PHR data, then the speci cation of a cross-organizational process followed by design of a secure PHR sharing protocol based on the emotional requirements. To de ne requirements for the PHR data collection, we use AOM. The ontology for the PHR and EHR integration process is de ned using OWL and the integration process is described with BPMN. The speci cation of a cross-organizational process includes a de nition of non-human agents described with AOM and OWL. The usage of smart contracts is considered in the context of the dynamic integration process. Secure PHR sharing protocol for the PHR includes a de nition of emotional requirements for PHR data sharing described with AOM and the emotional framework, followed by the ontology for PHR emotional aspects collection described with OWL. Finally, we design a security protocol for PHR sharing using BPMN and blockchain technology. 5
In the workshop paper [
We use a combination of di erent approaches for the evaluation. First, CPN is used to evaluate processes in the design phase to eliminate, or minimize the security risks. Also, it is possible to consider concurrency con icts, dependability issues and detect and eliminate eventual design aws as well as security and privacy issues with CPN. For architecture design, we use a combination of Requirements Bazaar for requirements gathering and also for the evaluation of the architecture. The Architecture Tradeo Analysis Method (ATAM) is used for evaluating and analyzing in a qualitative and empirical way the architecture of a patient-centric system with the related functional, non-functional and emotional requirements. ATAM is mostly applied for exploring the use of bestpractice architectural styles, for exploring quality attributes of architectures and for evaluating existing systems. ATAM also helps to modify an architecture, or integration work with new systems. Also, we use the HermiT reasoner for validating the ontology for the integration process and BPMN for reasoning about cross-organizational integration processes. We also conduct user-centered evaluations to capture user experiences with the design of the system to measure their level of engagement and emotional aspects. This evaluation we conduct using the emotional attachment framework as a practice lens to direct interviews and usability testing activities. 7
In this paper, we describe current issues and challenges in electronic healthcare, focusing on the need to create a systematic approach to designing a decentralized patient-centric system that meets these challenges. We then de ne three milestones to meet our goal of designing the architecture of such a system. To solve the PHR heterogeneity issue in healthcare processes, rst, the design of collecting and processing PHR is proposed. However, the patient involvement in healthcare processes creates additional challenges for such processes and therefore, we present the speci cation for cross-organizational processes working with PHR. Shifting the paradigm to patient-centric increases the role of patient emotions and privacy issues. Thus, we design the secure PHR sharing protocol that enables transparency of the PHR usage to the patient and based on the patient's emotional requirements. 8
The author would like to thank both supervisors Alex Norta from Tallinn Technical University of Technology and Antonette Mendoza from the University of Melbourne.