Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - Quantitative survey and recommendations

The needs and benefits of sharing health data to advance scientific research and improve clinical benefits have been well documented in recent years, specifically in the field of rare diseases where knowledge and expertise are limited and patient populations are geographically dispersed. Understanding what patients want and need from rare disease research and data sharing is important to ensure their participation and engagement in the process, and to ensure that these wishes and needs are embedded within research design. EURORDIS-Rare Diseases Europe regularly surveys the rare disease community to identify its perspectives and needs on a number of issues in order to represent rare disease patients and be their voice within European and International initiatives and policy developments. Here, we present key findings from a large quantitative survey conducted with patients with rare diseases and family members as part of a continuous evidence-based advocacy process developed at EURORDIS. The aim of this survey was to explore patient and family perspectives on data sharing and data protection in research and healthcare settings and develop relevant recommendations to support shaping of future data sharing initiatives in rare disease research. This survey, translated into 23 languages, was carried out via the Rare Barometer Programme and was designed to be accessible to a diverse population with a wide range of education backgrounds. It was widely disseminated via patient organisations worldwide to ensure that a wide range of voices and experiences were represented. Main findings Rare disease patients, regardless of the severity of their disease and their socio-demographic profile, are clearly supportive of data sharing to foster research and improve healthcare. However, rare disease patients’ willingness to share their data does come with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data. Conclusions To ensure sustainability and success of international data sharing initiatives in health and research for rare diseases, appropriate legislations need to be implemented and multi-stakeholder efforts need to be pursued to foster cultural and technological changes enabling the systematic integration of patients’ preferences regarding sharing of their own health data

The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia. This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care). Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed

Secure and Trustable Electronic Medical Records Sharing using Blockchain

Electronic medical records (EMRs) are critical, highly sensitive private information in healthcare, and need to be frequently shared among peers. Blockchain provides a shared, immutable and transparent history of all the transactions to build applications with trust, accountability and transparency. This provides a unique opportunity to develop a secure and trustable EMR data management and sharing system using blockchain. In this paper, we present our perspectives on blockchain based healthcare data management, in particular, for EMR data sharing between healthcare providers and for research studies. We propose a framework on managing and sharing EMR data for cancer patient care. In collaboration with Stony Brook University Hospital, we implemented our framework in a prototype that ensures privacy, security, availability, and fine-grained access control over EMR data. The proposed work can significantly reduce the turnaround time for EMR sharing, improve decision making for medical care, and reduce the overall costComment: AMIA 2017 Annual Symposium Proceeding

Disseminating Research Information through Facebook and Twitter (DRIFT): presenting an evidence based framework

Background: The social media platform Facebook boasts over 1,284 million daily active users globally. It is also known that a large proportion of adults use the internet to seek health related information.Aim: to critically analyse the use of social media to engage parents of children with ADHD with clinical research findings.Methods: Observation and qualitative content analysis combined with Facebook insights was used to evaluate the levels of engagement and interaction with different types of research information.Results: Over 1100 people from 41 nations have engaged with the group. Sharing information through a range of Facebook functions was found to successfully achieve engagement and reach nationally and internationally for this demographic.Conclusion: Lay research users are eager to engage and understand clinical research and social media is an appropriate way to disseminate this. This article has proposed some methods and explanatory reasons for this phenomena.Implications for practice: It is known that social media can be used for effective communication. This article presents a much-needed evidence based framework that may be used by nursing and health researchers to successfully achieve this

Potentials of social media for tacit knowledge sharing amongst physicians : preliminary findings

Tacit knowledge sharing amongst physicians, such as the sharing of clinical experiences, skills, or know-how, or know-whom, is known to have a significant impact on the quality of medical diagnosis and decisions. This paper posits that social media can provide new opportunities for tacit knowledge sharing amongst physicians, and demonstrates this by presenting findings from a review of relevant literature and a survey conducted with physicians. Semi-structured interviews were conducted with ten physicians from around the world who were active users of social media. Initial thematic analysis revealed eight themes as potential contributions of social web tools to facilitate tacit knowledge flow amongst physicians. The emergent themes are defined, linked to the literature, and supported by instances of interview transcripts. Findings presented here are preliminary, and final results will be reported after accomplishing all phases of data collection and analysis

A study of general practitioners' perspectives on electronic medical records systems in NHS Scotland

<b>Background</b> Primary care doctors in NHSScotland have been using electronic medical records within their practices routinely for many years. The Scottish Health Executive eHealth strategy (2008-2011) has recently brought radical changes to the primary care computing landscape in Scotland: an information system (GPASS) which was provided free-of-charge by NHSScotland to a majority of GP practices has now been replaced by systems provided by two approved commercial providers. The transition to new electronic medical records had to be completed nationally across all health-boards by March 2012. <p></p><b> Methods</b> We carried out 25 in-depth semi-structured interviews with primary care doctors to elucidate GPs' perspectives on their practice information systems and collect more general information on management processes in the patient surgical pathway in NHSScotland. We undertook a thematic analysis of interviewees' responses, using Normalisation Process Theory as the underpinning conceptual framework. <p></p> <b>Results</b> The majority of GPs' interviewed considered that electronic medical records are an integral and essential element of their work during the consultation, playing a key role in facilitating integrated and continuity of care for patients and making clinical information more accessible. However, GPs expressed a number of reservations about various system functionalities - for example: in relation to usability, system navigation and information visualisation. <b>Conclusion </b>Our study highlights that while electronic information systems are perceived as having important benefits, there remains substantial scope to improve GPs' interaction and overall satisfaction with these systems. Iterative user-centred improvements combined with additional training in the use of technology would promote an increased understanding, familiarity and command of the range of functionalities of electronic medical records among primary care doctors

A thematic synthesis of the experiences of adults living with hemodialysis

Background and objectives In-center dialysis patients spend significant amounts of time on the dialysis unit; additionally managing ESKD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesise the experiences of patients receiving in-center hemodialysis. Design, setting, participants, and measurements Embase, MEDLINE, CINAHL and PsychINFO, Google scholar and reference lists were searched for primary qualitative studies exploring the experiences of adult patients receiving treatment with in-center hemodialysis. A thematic synthesis was conducted. Results 17 studies involving 576 patients were included in the synthesis. 4 analytical themes were developed. The first theme “a new dialysis dependent self” describes the changes in identity and perceptions of self that could result from dialysis dependence. The second theme, “a restricted life”, describes the physical and emotional constraints patients described as a consequence of their dependence. Some patients reported strategies that allowed them to regain a sense of optimism and influence over the future and these contributed to the third theme, “regaining control”. The first three themes describe a potential for change through acceptance, adaption and re-gaining a sense of control. The final theme, “relationships with health professionals” describes the importance of these relationships for in-center patients and their influence on perceptions of power and support. These relationships are seen to influence the other three themes through information sharing, continuity and personalized support. Conclusions This synthesis has resulted in a framework that can be utilized to consider interventions to improve patients’ experiences of in-center hemodialysis care. Focusing on interventions that are incorporated into the established relationships patients have with their health care professionals may enable patients’ to progress towards a sense of control and improve satisfaction with care

International perspectives on social media guidance for nurses: a content analysis

Aim: This article reports the results of an analysis of the content of national and international professional guidance on social media for the nursing profession. The aim was to consolidate good practice examples of social media guidelines, and inform the development of comprehensive guidance. Method: A scoping search of professional nursing bodies’ and organisations’ social media guidance documents was undertaken using google search. Results: 34 guidance documents were located, and a content analysis of these was conducted. Conclusion: The results, combined with a review of competency hearings and literature, indicate that guidance should cover the context of social media, and support nurses to navigate and negotiate the differences between the real and online domains to help them translate awareness into actions

Enhancing Care Transitions for Older People through Interprofessional Simulation: A Mixed Method Evaluation

Introduction: The educational needs of the health and social care workforce for delivering effective integrated care are important. This paper reports on the development, pilot and evaluation of an interprofessional simulation course, which aimed to support integrated care models for care transitions for older people from hospital to home. Theory and methods: The course development was informed by a literature review and a scoping exercise with the health and social care workforce. The course ran six times and was attended by health and social care professionals from hospital and community (n=49). The evaluation aimed to elicit staff perceptions of their learning about care transfers of older people and to explore application of learning into practice and perceived outcomes. The study used a sequential mixed method design with questionnaires completed pre (n=44) and post (n=47) course and interviews (n=9) 2-5 months later. Results:Participants evaluated interprofessional simulation as a successful strategy. Post-course, participants identified learning points and at the interviews, similar themes with examples of application in practice were: Understanding individual needs and empathy; Communicating with patients and families; Interprofessional working; Working across settings to achieve effective care transitions. Conclusions and discussion:An interprofessional simulation course successfully brought together health and social care professionals across settings to develop integrated care skills and improve care transitions for older people with complex needs from hospital to home

Model consent clauses for rare disease research

Background: Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants' overall protection. Methods: A global Task Force was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. Results: The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. Conclusion: The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts