Government initiatives called for electronic health records for each individual healthcare consumer by 2014. the purpose of the initiatives is to provide for the common exchange of clinical information between healthcare consumers, healthcare providers, third-party payers and public healthcare officials.This exchange of healthcare information will impact the healthcare industry and enable more effective and efficient application of healthcare so that there may be a decrease in medical errors, increase in access to quality of care tools, and enhancement of decision making abilities by healthcare consumers, healthcare providers and government health agencies. an electronic personal health record (ePHR) created, managed and accessed by healthcare consumers may be the answer to fulfilling the national initiative. However, since healthcare consumers potentially are in control of their own ePHR, the healthcare consumer’s concern for privacy may be a barrier for the effective implementation of a nationwide network of ePHR. a technology acceptance model, an information boundary theory model and a trust model were integrated to analyze usage intentions of healthcare consumers of ePHR. Results indicate that healthcare consumers feel there is a perceived usefulness of ePHR; however they may not see ePHR as easy to use. Results also indicate that the perceived usefulness of utilizing ePHR does not overcome the low perceived ease of use to the extent that healthcare consumers intend to utilize ePHR. in addition, healthcare consumers may not understand the different components of usage: access, management, sharing and facilitating third-party ePHR. Also, demographics, computer self-efficacy, personal innovativeness, healthcare need and healthcare literacy impact a healthcare consumer’s privacy concerns and trusting intentions in the context of ePHR and intent to utilize ePHR. Finally, this research indicates that healthcare consumers may need a better understanding of the Health Insurance and Portability and Accountability Act of 1996 (HIPAA) regulations of ePHR as well as a better understanding of the impact HIPAA has on websites that may facilitate ePHR.

Indiana University-Purdue University Indianapolis (IUPUI) / Health IT has recently seen a significant progress with the nationwide migration of several hospitals from legacy patient records to standardized Electronic Health Record (EHR) and the establishment of various Health Information Exchanges that facilitate access to patient health data across multiple networks. While this progress is a major enabler of improved health care services, it is unable to deliver the continuum of the patient's current and historical health data needed by emerging trends in medicine. Fields such as precision and preventive medicine require longitudinal health data in addition to complementary data such as social, demographic and family history. This thesis introduces a person health record (PHR) which overcomes the above gap through a personalized framework that organizes health data according to the patient’s disease condition. The proposed personalized person health record (P2HR) represents a departure from the standardized one-size-fits-all model of currently available PHRs. It also relies on a hybrid peer-to-peer model to facilitate patient provider communication. One of the core challenges of the proposed framework is the mapping between the event-based data model used by current EHRs and PHRs and the proposed condition-based data model. Effectively mapping symptoms and measurements to disease conditions is challenging given that each symptom or measurement may be associated with multiple disease conditions. To alleviate these problems the proposed framework allows users and their health care providers to establish the relationships between events and disease conditions on a case-by-case basis. This organization provides both the patient and the provider with a better view of each disease condition and its progression.

Problem statement: As a result of the aging population, the number of people living with chronic disease has increased to almost 50% (CDC, 2004). Two of the main goals in treating patients with chronic diseases are to provide seamless care from setting to setting and prevent disability in the older adult. Many have proposed the use of electronic personal health record systems (PHRs) in the self-management process, but adoption remains low. The purpose of this research was to validate and test an explanatory model of the barriers and facilitators to older adults' adoption of personal health records for self-managing chronic illnesses. The long range goal of the research is to use the explanatory model to develop interventions that will maximize the facilitators and minimize the barriers to adoption. Methods: A preliminary attempt to capture the essential barriers and facilitators that predict adoption of PHRs among older adults with chronic illness was synthesized from the literature. In Phase One of the study, the model was integrated from existing literature and validated using a Delphi method. In Phase Two of the study, the model was pilot tested and refined for future investigations. Findings: The results of this study validated the Personal Health Records Adoption Model (PHRAM) and a preliminary instrument that measured barriers and facilitators to the adoption of PHRs in older adults who are self managing chronic illness. Additional findings indicate that while seniors are seeking options to manage their health and have expressed an interest in using Internet-based PHRs, they may require assistance to gain access to PHRs. Implications: The potential for PHRs to increase patient autonomy and reduce for disability and the resulting negative health consequences needs further investigation as we move into the next era of healthcare delivery. The results of this study provided the foundation for continued theoretically-based research in this area.

abstract: A long tradition of adoption of innovations research in the information systems context suggests that innovative information systems are typically adopted by the largest companies, with the most slack resources and the most management support within competitive markets. Additionally, five behavioral characteristics (relative advantage, compatibility, observability, trialability, and complexity) are typically associated with demand-side adoption. Recent market trends suggest, though, that additional influences and contingencies may also be having a significant impact on adoption of innovative information systems--on both the supply and demand-sides. The primary objective of this dissertation is to extend our theoretical knowledge into a context where consumer influence is a key consideration. Specifically, this dissertation focuses on the Personal Health Record (PHR) and patient portal market due to its unique position as a mediator between supply (ambulatory care clinic) and demand-side (patient and health consumer) interests. Four studies are presented in this dissertation and include: 1) an econometric examination of the contingencies associated with supply-side (ambulatory care clinic) adoption of patient portals, 2) a behavioral assessment of patient PHR adoption intentions, 3) an integrated latent variable and discrete choice evaluation of consumer business model preferences for digital services (PHRs), and 4) an experimental evaluation of how digital service (patient portal) feature preferences are impacted by assimilation and contrast effects. The primary contribution of this dissertation is that adoption (and adoption intentions) of consumer information systems are significantly impacted by: 1) supply-side adoption contingencies (even when controlling for dominant-paradigm adoption of innovation characteristics), and 2) demand-side consumer preferences for business models and features in the context of assimilation-contrast (even when controlling for individual differences). Overall, this dissertation contributes a new understanding of how contingent factors, consumer perceived value, and assimilation/contrast of features are impacting adoption of consumer information systems / Dissertation/Thesis / Ph.D. Information Management 2012

Yes / Background: Electronic personal health records (ePHRs) are secure Web-based tools that enable individuals to access, manage, and share their medical records. England recently introduced a nationwide ePHR called Patient Online. As with ePHRs in other countries, adoption rates of Patient Online remain low. Understanding factors affecting patients’ ePHR use is important to increase adoption rates and improve the implementation success of ePHRs. Objective: This study aimed to examine factors associated with patients’ use of ePHRs in England. Methods: The unified theory of acceptance and use of technology was adapted to the use of ePHRs. To empirically examine the adapted model, a cross-sectional survey of a convenience sample was carried out in 4 general practices in West Yorkshire, England. Factors associated with the use of ePHRs were explored using structural equation modeling. Results: Of 800 eligible patients invited to take part in the survey, 624 (78.0%) returned a valid questionnaire. Behavioral intention (BI) was significantly influenced by performance expectancy (PE; beta=.57, P<.001), effort expectancy (EE; beta=.16, P<.001), and perceived privacy and security (PPS; beta=.24, P<.001). The path from social influence to BI was not significant (beta=.03, P=.18). Facilitating conditions (FC) and BI significantly influenced use behavior (UB; beta=.25, P<.001 and beta=.53, P<.001, respectively). PE significantly mediated the effect of EE and PPS on BI (beta=.19, P<.001 and beta=.28, P=.001, respectively). Age significantly moderated 3 paths: PE→BI, EE→BI, and FC→UB. Sex significantly moderated only the relationship between PE and BI. A total of 2 paths were significantly moderated by education and internet access: EE→BI and FC→UB. Income moderated the relationship between FC and UB. The adapted model accounted for 51% of the variance in PE, 76% of the variance in BI, and 48% of the variance in UB. Conclusions: This study identified the main factors that affect patients’ use of ePHRs in England, which should be taken into account for the successful implementation of these systems. For example, developers of ePHRs should involve patients in the process of designing the system to consider functions and features that fit patients’ preferences and skills to ensure systems are useful and easy to use. The proposed model accounted for 48% of the variance in UB, indicating the existence of other, as yet unidentified, factors that influence the adoption of ePHRs. Future studies should confirm the effect of the factors included in this model and identify additional factors.

A personal health record (PHR) contains health data about a patient, which is maintained by the patient. Patients may share their PHR data with a wide range of users such as healthcare providers and researchers through the use of a third party such as a cloud service provider. To protect the confidentiality of the data and to facilitate access by authorized users, patients use Attribute-Based Encryption (ABE) to encrypt the data before uploading it onto the cloud servers. With ABE, an access policy is defined based on users' attributes such as a doctor in a particular hospital, or a researcher in a particular university, and the encrypted data can only be decrypted if and only if a user's attributes comply with the access policy attached to a data object. Our critical analysis of the related work in the literature shows that existing ABE based access control frameworks used for sharing PHRs in a storage cloud can be enhanced in terms of scalability and security. With regard to scalability, most existing ABE based access control frameworks rely on the use of a single attribute authority to manage all users, making the attribute authority into a potential bottleneck regarding performance and security. With regard to security, the existing ABE based access control frameworks assume that all users have the same level of trust (i.e. they are equally trustworthy) and all PHR data files have the same sensitivity level, which means that the same protection level is provided. However, in our analysis of the problem context, we have observed that this assumption may not always be valid. Some data, such as patients' personal details and certain diseases, is more sensitive than other data, such as anonymised data. Access to more sensitive data should be governed by more stringent access control measures. This thesis presents our work in rectifying the two limitations highlighted above. In doing so, we have made two novel contributions. The first is the design and evaluation of a Hierarchical Attribute-Based Encryption (HABE) framework for sharing PHRs in a storage cloud. The HABE framework can spread the key management overheads imposed on a single attribute authority tasked with the management of all the users into multiple attribute authorities. This is achieved by (1) classifying users into different groups (called domains) such as healthcare, education, etc., (2) making use of multiple attribute authorities in each domain, (3) structuring the multiple attribute authorities in each domain in a hierarchical manner, and (4) allowing each attribute authority to be responsible for managing particular users in a specific domain, e.g. a hospital or a university. The HABE framework has been analyzed and evaluated in term of security and performance. The security analysis demonstrates that the HABE framework is resistant to a host of security attacks including user collusions. The performance has been analyzed in terms of computational and communication overheads and the results show that the HABE framework is more efficient and scalable than the most relevant comparable work. The second novel contribution is the design and evaluation of a Trust-Aware HABE (Trust+HABE) framework, which is an extension of the HABE framework. This framework is also intended for sharing PHRs in a storage cloud. The Trust+HABE framework is designed to enhance security in terms of protecting access to sensitive PHR data while keeping the overhead costs as low as possible. The idea used here is that we classify PHR data into different groups, each with a distinctive sensitivity level. A user requesting data from a particular group (with a given sensitivity level) must demonstrate that his/her trust level is not lower than the data sensitivity level (i.e. trust value vs data sensitivity verification). A user's trust level is derived based on a number of trust-affecting factors, such as his/her behaviour history and the authentication token type used to identify him/herself etc. For accessing data at the highest sensitivity level, users are required to get special permissions from the data owners (i.e. the patients who own the data), in addition to trust value vs data sensitivity verification. In this way, the framework not only adapts its protection level (in imposing access control) in response to the data sensitivity levels, but also provides patients with more fine-grained access control to their PHR data. The Trust+HABE framework is also analysed and evaluated in term of security and performance. The performance results from the Trust+HABE framework are compared against the HABE framework. The comparison shows that the additional computational, communication, and access delay costs introduced as the result of using the trust-aware approach to access control in this context are not significant compared with computational, communication, and access delay costs of the HABE framework.

Background: Diabetes prevalence in Scotland is increasing at ~4.6% annually; 247,278 (4.7%) in 2011. My Diabetes My Way (MDMW) is the NHS Scotland information portal, containing validated educational materials for people with diabetes and their carers. Internet-based interventions have potential to enhance self-management and shift power towards the patient, with electronic personal health records (PHRs) identified as an ideal method of delivery. In December 2010, a new service was launched in MDMW, allowing patients across Scotland access to their shared electronic record. The following thesis aims to identify and quantify the benefits of a diabetes-focused electronic personal health record within NHS Scotland. Methods: A diabetes-focused, population-based PHR was developed based on data sourced from primary, secondary and tertiary care via the national diabetes system, Scottish Care Information - Diabetes Collaboration (SCI-DC). The system includes key diagnostic information; demography; laboratory tests; lifestyle factors, foot and eye screening results; prescribed medication and clinical correspondence. Changes are tracked by patients over time using history graphs and tables, data items link to detailed descriptions explaining why they are collected, what they are used for and what normal values are, while tailored information links refer individuals to facts related to their condition. A series of quasi-experimental studies have been designed to assess the intervention using subjectivist, mixed-methods approaches incorporating multivariate analysis and grounded theory. These studies assess patient expectations and experiences of records access, system usage and uptake and provide preliminary analysis on the impact on clinical process outcomes. Survey questionnaires were used to capture qualitative data, while quantitative data were obtained from system audit trails and from the analysis of clinical process outcomes before and after the intervention. Results: By the end of the second year, 2601 individuals registered to access their data (61% male; 30.4% with type 1 diabetes); 1297 completed the enrolment process and 625 accessed the system (most logins=346; total logins=5158; average=8.3/patient; median=3). Audit trails show 59599 page views (95/patient), laboratory test results proving the most popular (11818 accesses;19/patient). The most utilised history graph was HbA1c (2866 accesses;4.6/patient). Users are younger, more recently diagnosed and have a heavy bias towards type 1 diabetes when compared to the background population. They are also likely to be a more highly motivated ‘early adopting’ cohort. Further analysis was performed to compare pre- and post-intervention clinical outcomes after the system had been active for nearly two and a half years. Results of statistical significance were not forthcoming due to limited data availability, however there are grounds for encouragement. Creatinine tests in particular improved following 1 year of use, with type 1 females in particular faring better than those in patient other groups. For other clinical tests such as HbA1c, triglycerides, weight and body mass index improvements were shown in mean and/or median values.96% of users believe the system is usable. Users also stated that it useful to monitor diabetes control (93%), improve knowledge (89%) and enhance motivation (89%). Findings show that newly diagnosed patients may be more likely to learn more about their new condition, leading to more productive consultations with the clinical team (98%). In the pre-project analysis, 26% of registrants expressed concerns about the security of personal information online, although those who actually went on to use it reported 100% satisfaction that their data were safe. Engagement remains high. In the final month of year two, 44.6% of users logged in to the system. 55.3% of users had logged in within the previous 3 months, 78.9% within the previous 6 months and 91.4% within the previous year. Some legacy PHRs have failed due to lack of uptake and deficiencies in usability, so as new systems progress, it is essential not to repeat the mistakes of the past. Feedback: "It is great to be able to view all of my results so that I can be more in charge of my diabetes".Conclusion: The MDMW PHR is now a useful additional component for the self-management of diabetes in Scotland. Although there are other patient access systems available internationally, this system is unique in offering access to an entire national population, providing access to information collected from all diabetes-related sources. Despite its development for the NHS Scotland environment, it has the potential to connect to any electronic medical record. This local and domain-specific knowledge has much wider applicability as outlined in the recommendations detailed, particularly around health service and voluntary sector ownership, patient involvement, administrative processes, research activities and communication. The current project will reach 5000 patients by the end of 2013.

Στα πλαίσια της παρούσας διπλωματικής εργασίας, πραγματοποιήθηκε η μελέτη, η σχεδίαση και η υλοποίηση του προσωπικού ηλεκτρονικού ιατρικού φακέλου, την παρουσία και χρήση του οποίου επιβάλλει η σύγχρονη πραγματικότητα και οι απαιτήσεις για γρήγορη και εύκολη πρόσβαση στην πληροφορία. Η εφαρμογή που αναπτύχθηκε είναι διαδικτυακή, με χρηστο - κεντρικό χαρακτήρα, προσδίδοντας ιδιαίτερη έμφαση στο χρήστη – ασθενή, παρέχοντας του συνεχής και εύκολη πρόσβαση. Το γραφικό της περιβάλλον επιδιώκει να την κάνει προσιτή προς κάθε χρήστη, ανεξαρτήτως επιπέδου γνώσεων τόσο γενικών, όσο και ειδικών που αφορούν στη χρήση ηλεκτρονικών υπολογιστών, παρέχοντας του, μέσω γραφικών, ενδείξεις και εργαλεία προκειμένου αυτός να φέρει εις πέρας επιθυμητές λειτουργίες που του προσφέρονται από την εφαρμογή, όπως ενημέρωση σχετικά με ιατρικά θέματα, αναζήτηση και εύρεση επαγγελματιών υγείας, υπολογισμό σημαντικών δεικτών σχετικών με την κατάσταση της υγείας του, ανταλλαγή απόψεων με άλλους χρήστες σε τόπο συζητήσεων, δημιουργία και ενημέρωση του προσωπικού ιατρικού του φακέλου. Πρόκειται, λοιπόν, για την ανάπτυξη μιάς φιλικής προς το χρήστη εφαρμογής, που πληρεί τις προϋποθέσεις ευχρηστίας και ασφάλειας των προσωπικών δεδομένων και δη σε έναν τομέα όπως ο ιατρικός, με το πληθος ευαίσθητων δεδομένων που διαχειρίζεται και υποχρεούται να διαφυλάσσει την ακεραιότητα και την εμπιστευτικότητά τους. Γίνεται αναφορά στα πρότυπα και στις κωδικοποιήσεις που υπάρχουν για τον ηλεκτρονικό ιατρικό φάκελο, καθώς και στις υπάρχουσες τεχνολογίες διαδικτύου, διαθέσιμες για το σχεδιασμό και την υλοποίησή του. / Research, design and implementation of personal health records.

Indiana University-Purdue University Indianapolis (IUPUI) / Primary users can create a user experience (UX) for others—secondary users— when interacting with a system in public. Common ground occurs when people have certain knowledge in common and each knows that they have this shared understanding. This research investigates how designing for a secondary UX improves common ground during a patient-provider first encounter. During formative work, patients and providers participated in telephonic interviews and answered online questionnaires so that their respective information requirements for clinical encounters could be understood. The outcome of the formative work was a smartphone application prototype to be used as the treatment in an experimental study. In a mixed methods study, with a patient role-player using the prototype during a simulated clinical encounter with 12 providers, the impact of the prototype upon secondary user satisfaction and common ground was assessed. The main finding was that the prototype was capable of positively impacting secondary user satisfaction and facilitating common ground in certain instances. Combining the notions of human-computer interaction design, common ground, and smartphone technology improved the efficiency and effectiveness of providers during the simulated face-to-face first encounter with a patient. The investigation substantiated the notion that properly designed interactive systems have the potential to provide a satisfactory secondary UX and facilitate common ground.

<p>Early trials of Electronic Personal Health Records (ePHRs) show they provide two strong benefits: better healthcare outcomes and lower taxpayer costs. However, consumers are concerned about the possible loss or misuse of personal health data. For people to adopt ePHRs, they must trust both the system and the operating organization. The model presented here studies consumers’ likelihood of adopting ePHRs, combining trust, distrust, risk, motivation, and ease of use; as well as their perceptions of government, software vendors, and physicians as providers of ePHRs. Based on the Technology Acceptance Model, and incorporating elements of trust-distrust dualism and perceived risk, the model was tested empirically using survey data from 366 Canadian adults. The model explains 52 percent of the variance in the intention to use an ePHR, with strong negative effects from perceived risk and distrust, and strong positive effects from trust and perceived usefulness. Other findings include further evidence that trust and distrust are different constructs, not ends of a spectrum; that Canadians’ relationship with their healthcare system is complex; and that the risks in using an online system can be overcome by the perceived benefits. Open-ended responses show that people generally trust their doctors, but are sceptical that a doctor could provide a secure ePHR. Responses indicated that participants liked the consolidation of data and ease of access, but feared loss of privacy.</p> / Doctor of Philosophy (PhD)