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Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study.

ABSTRACT: BACKGROUND:Although the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE. OBJECTIVE:The objective of this study was to analyze the awareness among patients, health care professionals, and information technology developers toward blockchain-based HIE, and compare their different perspectives related to the platform using a qualitative research methodology. METHODS:In this qualitative study, we applied grounded theory and the Promoting Action on Research Implementation in the Health Service (PARiHS) framework. We interviewed 7 patients, 7 physicians, and 7 developers, for a total of 21 interviewees. RESULTS:Regarding the leakage of health information, the patient group did not have concerns in contrast to the physician and developer groups. Physicians were particularly concerned about the fact that errors in the data cannot be easily fixed due to the nature of blockchain technology. Patients were not against the idea of providing information for clinical trials or research institutions. They wished to be provided with the results of clinical research rather than being compensated for providing data. The developers emphasized that blockchain must be technically mature before it can be applied to the health care scene, and standards of medical information to be exchanged must first be established. CONCLUSIONS:The three groups' perceptions of blockchain were generally positive about the idea of patients having the control of sharing their own health information. However, they were skeptical about the cooperation among various institutions and implementation for data standardization in the establishment process, in addition to how the service will be employed in practice. Taking these factors into consideration during planning, development, and operation of a platform will contribute to establishing practical treatment plans and tracking in a more convenient manner for both patients and physicians. Furthermore, it will help expand the related research and health management industry based on blockchain.

SUBMITTER: Lee K

PROVIDER: S-EPMC7695529 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study.

Lee Keehyuck K Lim Kahyun K Jung Se Young SY Ji Hyerim H Hong Kyungpyo K Hwang Hee H Lee Ho-Young HY

Journal of medical Internet research 20201113 11

<h4>Background</h4>Although the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE.<h4>Objective</h4>The objective of this study was to analyze the awareness among p ...[more]

PMID: 33185553

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Project description:BackgroundNowadays, a number of mechanisms and tools are being used by health care organizations and physicians to electronically exchange the personal health information of patients. The main objectives of different methods of health information exchange (HIE) are to reduce health care costs, minimize medical errors, and improve the coordination of interorganizational information exchange across health care entities. The main challenges associated with the common HIE systems are privacy concerns, security risks, low visibility of system transparency, and lack of patient control. Blockchain technology is likely to disrupt the current information exchange models utilized in the health care industry.ObjectiveLittle is known about patients' perceptions and attitudes toward the implementation of blockchain-enabled HIE networks, and it is still not clear if patients (as one of the main HIE stakeholders) are likely to opt in to the applications of this technology in HIE initiatives. Thus, this study aimed at exploring the core value of blockchain technology in the health care industry from health care consumers' views.MethodsTo recognize the potential applications of blockchain technology in health care practices, we designed 16 information exchange scenarios for controlled Web-based experiments. Overall, 2013 respondents participated in 16 Web-based experiments. Each experiment described an information exchange condition characterized by 4 exchange mechanisms (ie, direct, lookup, patient-centered, and blockchain), 2 types of health information (ie, sensitive vs nonsensitive), and 2 types of privacy policy (weak vs strong).ResultsThe findings show that there are significant differences in patients' perceptions of various exchange mechanisms with regard to patient privacy concern, trust in competency and integrity, opt-in intention, and willingness to share information. Interestingly, participants hold a favorable attitude toward the implementation of blockchain-based exchange mechanisms for privacy protection, coordination, and information exchange purposes. This study proposed the potentials and limitations of a blockchain-based attempt in the HIE context.ConclusionsThe results of this research should be of interest to both academics and practitioners. The findings propose potential limitations of a blockchain-based HIE that should be addressed by health care organizations to exchange personal health information in a secure and private manner. This study can contribute to the research in the blockchain area and enrich the literature on the use of blockchain in HIE efforts. Practitioners can also identify how to leverage the benefit of blockchain to promote HIE initiatives nationwide.

Project description:BackgroundThe privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community.ObjectiveThis study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE.MethodsSemistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses.ResultsWe interviewed 14 participants. Their privacy concerns varied, depending on the participant's privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants' privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits.ConclusionsThis study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes-all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI.

Project description:BackgroundThe US Department of Veterans Affairs (VA) seeks to achieve interoperability with other organizations, including non-VA community and regional health information exchanges (HIEs).ObjectiveThis study aims to understand the perspectives of leaders involved in implementing information exchange between VA and non-VA providers via a community HIE.MethodsWe interviewed operational, clinical, and information technology leaders at one VA facility and its community HIE partner. Respondents discussed their experiences with VA-HIE, including barriers and facilitators to implementation, and the associated impact on health care providers. Transcribed interviews were coded and analyzed using immersion-crystallization methods.ResultsVA and community HIE leaders found training to be a key factor when implementing VA-HIE and worked cooperatively to provide several styles and locations of training. During recruitment, a high-touch approach was successfully used to enroll patients and overcome their resistance to opting in. Discussion with leaders revealed the high levels of complexity navigated by VA providers and staff to send and retrieve information. Part of the complexity stemmed from the interconnected web of information systems and human teams necessary to implement VA-HIE information sharing. These interrelationships must be effectively managed to guide organizational decision making.ConclusionsOrganizational leaders perceived information sharing to be of essential value in delivering high-quality, coordinated health care. The VA continues to increase access to outside care through the VA Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act. Along with this increase in non-VA medical care, there is a need for greater information sharing between VA and non-VA health care organizations. Insights by leaders into barriers and facilitators to VA-HIE can be applied by other national and regional networks that seek to achieve interoperability across health care delivery systems.

Project description:BACKGROUND: Various countries are currently implementing a national electronic patient record (n-EPR). Despite the assumed positive effects of n-EPRs, their overall adoption remains low and meets resistance from health care providers. This study aims to increase our understanding of health care providers' attitude towards the n-EPR, by investigating their perceptions of the benefits and problems of electronic information exchange in health care and the n-EPR in particular. METHODS: The study was conducted in three Dutch health care settings: acute care, diabetes care, and ambulatory mental health care. Two health care organisations were included per setting. Between January and June 2010, interviews were conducted with 17 stakeholders working in these organisations. Relevant themes were deduced by means of thematic qualitative analysis. RESULTS: Health care providers perceived electronic information exchange to promote the efficiency and quality of care. The problems they perceived in electronic information exchange mainly concerned the confidentiality and safety of information exchange and the reliability and quality of patient data. Many problems perceived by health care providers did not specifically apply to the n-EPR, but to electronic information exchange in general. CONCLUSIONS: The implementation of the Dutch n-EPR has mainly followed a top-down approach, thereby neglecting the fact that the perceptions and preferences of its users (health care providers) need to be addressed in order to achieve successful implementation. The results of this study provide valuable suggestions about how to promote health care providers' willingness to adopt electronic information exchange, which can be useful for other countries currently implementing an n-EPR. Apart from providing information about the benefits and usefulness of electronic information exchange, efforts should be focused on minimising the problems as perceived by health care providers. The safety and confidentiality of electronic information exchange can be improved by developing tools to evaluate the legitimacy of access to electronic records, by increasing health care providers' awareness of the need to be careful when using patient data, and by measures to limit access to sensitive patient data. Improving health care providers' recording behaviour is important to improve the reliability and quality of electronically exchanged patient data.

Project description:BackgroundDespite a growing body of knowledge about eHealth innovations, there is still limited understanding of the implementation of such tools in everyday primary care.ObjectiveThe objective of our study was to describe health care staff's experience with a digital communication system intended for patient-staff encounters via a digital route in primary care.MethodsIn this qualitative study we conducted 21 individual interviews with staff at 5 primary care centers in Sweden that had used a digital communication system for 6 months. The interviews were guided by narrative queries, transcribed verbatim, and subjected to content analysis.ResultsWhile the digital communication system was easy to grasp, it was nevertheless complex to use, affecting both staffing and routines for communicating with patients, and documenting contacts. Templates strengthened equivalent procedures for patients but dictated a certain level of health and digital literacy for accuracy. Although patients expected a chat to be synchronous, asynchronous communication was extended over time. The system for digital communication benefited assessments and enabled more efficient use of resources, such as staff. On the other hand, telephone contact was faster and better for certain purposes, especially when the patient's voice itself provided data. However, many primary care patients, particularly younger ones, expected digital routes for contact. To match preferences for communicating to a place and time that suited patients was significant; staff were willing to accept some nuisance from a suboptimal service-at least for a while-if it procured patient satisfaction. A team effort, including engaged managers, scaffolded the implementation process, whereas being subjected to a trial without likely success erected barriers.ConclusionsA digital communication system introduced in regular primary care involved complexity beyond merely learning how to manage the tool. Rather, it affected routines and required that both the team and the context were addressed. Further knowledge is needed about what factors facilitate implementation, and how. This study suggested including ethical perspectives on eHealth tools, providing an important but novel aspect of implementation.

Project description:BACKGROUND:Health care professionals (HCPs) are often patients' first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHRs) for nondirect care purposes. Their engagement is fundamental to ensure patients' buy-in and a successful implementation of health care data sharing schemes. However, their views on this subject are seldom evaluated. OBJECTIVE:This study aimed to explore HCPs' perspectives on the secondary uses of health care data in England. Specifically, we aimed to assess their knowledge on its purposes and the main concerns about data sharing processes. METHODS:A total of 30 interviews were conducted between March 27, 2017, and April 7, 2017, using a Web-based interview platform and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East England, and Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using the framework analysis method to identify emerging themes. RESULTS:HCPs were knowledgeable about the possible secondary uses of data and highlighted its importance for patient profiling and tailored care, research, quality assurance, public health, and service delivery planning purposes. Main concerns toward data sharing included data accuracy, patients' willingness to share their records, challenges on obtaining free and informed consent, data security, lack of adequacy or understanding of current policies, and potential patient exposure and exploitation. CONCLUSIONS:These results suggest a high level of HCPs' understanding about the purposes of data sharing for secondary purposes; however, some concerns still remain. A better understanding of HCPs' knowledge and concerns could inform national communication policies and improve tailoring to maximize efficiency and improve patients' buy-in.

Project description:BackgroundThe spiritual aspect of care is an often neglected resource in pain therapies. The aim of this study is to identify commonalities and differences in chronic pain patients' (CPP) and health care professionals' (HCP) perceptions on the integration of spiritual care into multimodal pain therapy.MethodsWe conducted a qualitative exploratory study with 42 CPPs and 34 HCPs who were interviewed in 12 separate groups in five study centres specialising in chronic pain within German-speaking Switzerland. The interviews were transcribed and subjected to a qualitative content analysis. Findings were generated by juxtaposing and analysing the statements of (a) HCP about HCP, (b) HCP about CPP, (c) CPP about HCP, and (d) CPP about CPP.ResultsViews on spiritual concerns and needs in chronic pain care can be described in three distinct dimensions: function (evaluating the need / request to discuss spiritual issues), structure (evaluating when / how to discuss spiritual issues) and context (evaluating why / under which circumstances to discuss spiritual issues). CPPs stress the importance of HCPs recognizing their overall human integrity, including the spiritual dimension, and would like to grant spiritual concerns greater significance in their therapy. HCPs express difficulties in addressing and discussing spiritual concerns and needs with chronic pain patients. Both parties want clarification of the context in which the spiritual dimension could be integrated into treatment. They see a need for greater awareness and training of HCPs in how the spiritual dimension in therapeutic interactions might be addressed.ConclusionsAlthough there are similarities in the perspectives of HCPs and CPPs regarding spiritual concerns and needs in chronic pain care, there are relevant differences between the two groups. This might contribute to the neglect of the spiritual dimension in the treatment of chronic pain.Trial registrationThis study was part of a larger research project, registered in a primary (clinicaltrial.gov: NCT03679871 ) and local (kofam.ch: SNCTP000003086 ) clinical trial registry.

Dataset Information

Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study.

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Perspectives of Patients, Health Care Professionals, and Developers Toward Blockchain-Based Health Information Exchange: Qualitative Study.

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