Evaluation of patient perception towards dynamic health data sharing using blockchain based digital consent with the Dovetail digital consent application : a cross sectional exploratory study

Background New patient-centric integrated care models are enabled by the capability to exchange the patient’s data amongst stakeholders, who each specialise in different aspects of the patient’s care. This requires a robust, trusted and flexible mechanism for patients to offer consent to share their data. Furthermore, new IT technologies make it easier to give patients more control over their data, including the right to revoke consent. These characteristics challenge the traditional paper-based, single-organisation-led consent process. The Dovetail digital consent application uses a mobile application and blockchain based infrastructure to offer this capability, as part of a pilot allowing patients to have their data shared amongst digital tools, empowering patients to manage their condition within an integrated care setting. Objective To evaluate patient perceptions towards existing consent processes, and the Dovetail blockchain based digital consent application as a means to manage data sharing in the context of diabetes care. Method Patients with diabetes at a General Practitioner practice were recruited. Data were collected using focus groups and questionnaires. Thematic analysis of the focus group transcripts and descriptive statistics of the questionnaires was performed. Results There was a lack of understanding of existing consent processes in place, and many patients did not have any recollection of having previously given consent. The digital consent application received favourable feedback, with patients recognising the value of the capability offered by the application. Patients overwhelmingly favoured the digital consent application over existing practice. Conclusions Digital consent was received favourably, with patients recognising that it addresses the main limitations of the current process. Feedback on potential improvements was received. Future work includes confirmation of results in a broader demographic sample and across multiple conditions

Discussing uncertainty and risk in primary care: recommendations of a multi-disciplinary panel regarding communication around prostate cancer screening.

BackgroundShared decision making improves value-concordant decision-making around prostate cancer screening (PrCS). Yet, PrCS discussions remain complex, challenging and often emotional for physicians and average-risk men.ObjectiveIn July 2011, the Centers for Disease Control and Prevention convened a multidisciplinary expert panel to identify priorities for funding agencies and development groups to promote evidence-based, value-concordant decisions between men at average risk for prostate cancer and their physicians.DesignTwo-day multidisciplinary expert panel in Atlanta, Georgia, with structured discussions and formal consensus processes.ParticipantsSixteen panelists represented diverse specialties (primary care, medical oncology, urology), disciplines (sociology, communication, medical education, clinical epidemiology) and market sectors (patient advocacy groups, Federal funding agencies, guideline-development organizations).Main measuresPanelists used guiding interactional and evaluation models to identify and rate strategies that might improve PrCS discussions and decisions for physicians, patients and health systems/society. Efficacy was defined as the likelihood of each strategy to impact outcomes. Effort was defined as the relative amount of effort to develop, implement and sustain the strategy. Each strategy was rated (1-7 scale; 7 = maximum) using group process software (ThinkTank(TM)). For each group, intervention strategies were grouped as financial/regulatory, educational, communication or attitudinal levers. For each strategy, barriers were identified.Key resultsHighly ranked strategies to improve value-concordant shared decision-making (SDM) included: changing outpatient clinic visit reimbursement to reward SDM; development of evidence-based, technology-assisted, point-of-service tools for physicians and patients; reframing confusing prostate cancer screening messages; providing pre-visit decision support interventions; utilizing electronic health records to promote benchmarking/best practices; providing additional training for physicians around value-concordant decision-making; and using re-accreditation to promote training.ConclusionsConference outcomes present an expert consensus of strategies likely to improve value-concordant prostate cancer screening decisions. In addition, the methodology used to obtain agreement provides a model of successful collaboration around this and future controversial cancer screening issues, which may be of interest to funding agencies, educators and policy makers

Ethical issues of electronic patient data and informatics in clinical trial settings

The field of cancer bio-informatics unites the disciplines of scientific and clinical research withclinical practice and the treatment of individual patients. There is a need to study patients andsometimes their families, over many decades, to follow disease progress and long-term outcomes.This may require research teams to access the routinely-collected health data from generalpractice and hospital health records, prior to and after the cancer diagnosis is made. This clinicalinformation will increasingly include data provided by patients or acquired from them throughwearable devices that can monitor or deliver treatment, and data acquired from genetic relativesof the patient.All of these data, whether explicitly collected for the purpose of a clinical study, or routinelycollected as part of a patient?s life-time healthcare journey, are personal health data. There areethical and legal requirements to manage these data with care. This chapter explores the ethicalrequirements for collecting, holding, analysing and sharing personal health data, and thelegislation covering such activities

Framework of Social Customer Relationship Management in E-Health Services

Healthcare organization is implementing Customer Relationship Management (CRM) as a strategy for managing interactions with patients involving technology to organize, automate, and coordinate business processes. Web-based CRM provides healthcare organization with the ability to broaden service beyond its usual practices in achieving a complex patient care goal, and this paper discusses and demonstrates how a new approach in CRM based on Web 2.0 or Social CRM helps healthcare organizations to improve their customer support, and at the same time avoiding possible conflicts, and promoting better healthcare to patients. A conceptual framework of the new approach will be proposed and highlighted. The framework includes some important features of Social CRM such as customer's empowerment, social interactivity between healthcare organization-patients, and patients-patients. The framework offers new perspective in building relationships between healthcare organizations and customers and among customers in e-health scenario. It is developed based on the latest development of CRM literatures and case studies analysis. In addition, customer service paradigm in social network's era, the important of online health education, and empowerment in healthcare organization will be taken into consideration.Comment: 15 pages. arXiv admin note: substantial text overlap with arXiv:1204.3689, arXiv:1203.3919, arXiv:1204.3685, arXiv:1203.4309, arXiv:1204.3691, arXiv:1203.392

Conflict of roles, a conflict of ideas? The unsettled relations between care team staff and independent mental health advocates.

Drawing on a national study of Independent Mental Health Advocacy we explore the social relations of independent advocacy. The study was commissioned by the Department of Health (England) and involved a case study design covering eight different geographies and service configurations, and interviews or focus groups with a total of 289 stakeholders across two phases of inquiry. This paper focuses on analysis of qualitative data relevant to the relationship between mental health care services and independent advocacy services, drawn from interviews with 214 participants in phase two of the study. Discussion of these particular findings affords insights into the working relations of independent advocacy within mental health services beset by reorganizational change and funding cuts, and increasing levels of legally sanctioned compulsion and coercion. We offer a matrix which accounts for the different types of working relationships that can arise and how these are associated with various levels of understanding of independent advocacy on the one hand, and appreciation for the value of advocacy on the other. The discussion is framed by the wider literature on advocacy and the claims by practitioners such as nurses for an advocacy role as part of their professional repertoire

Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth

Part of the Volume on Digital Media, Youth, and Credibility. This chapter considers the role of Web technologies on the availability and consumption of health information. It argues that young people are largely unfamiliar with trusted health sources online, making credibility particularly germane when considering this type of information. The author suggests that networked digital media allow for humans and technologies act as "apomediaries" that can be used to steer consumers to high quality health information, thereby empowering health information seekers of all ages

Alcuni abstract di articoli che trattano argomenti relativi all'eHealth

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