BackgroundMost countries face an ageing population, increasing chronic diseased, and constrictions on budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places.MethodsData on the type and level of access citizens have to their own health data in three countries was gathered from public sources.ResultsData from each individual country is presented and the experiences of Denmark, Estonia and Australia are examined whilst similarities and differences explored. The discussion adopts a citizen-centred perspective to consider how the different e-portal systems support, protect and structure citizen interactions with their own health data in three key areas: Security, privacy and data protection; User support; and Citizen adoption and use.ConclusionsThe paper highlights the impact of opt-in/opt-out approaches on citizen access and the lack of a structured approach to addressing differences in citizen health and e-health literacy. This research also confirms while current data provides detail on the availability and use of personal health data by citizens, questions still remain over the ultimate impact on patient outcomes of these initiatives. It is anticipated the insights generated from the three countries experiences, supporting citizen access to their health data will be useful to improve these initiatives and guide other countries aspiring to support similar initiatives.
Introduction The term “digital healthcare professional” alludes to a health professional with the additional digital capabilities such as information and technology. The assumption that attaining technical knowledge and skills to meet the available professional standards in digital healthcare, will engage and empower healthcare users, thus deliver person-centered digital healthcare (PCDHc), is flawed. Identifying where digital healthcare and technologies can genuinely support person-centered care may lead to future discourse and practical suggestions to build person-centered integrated digital healthcare environments. This review examines current digital health and informatics capability frameworks and identifies the opportunity to include additional or alternative principles. Methods A scoping review was conducted. Literature valuing person-centered digital healthcare requirements, digital health capabilities, and competencies were identified between 2000 and 2019 inclusive, then collated and considered. Using a PRISMA approach for eligibility screening, thirteen articles met the study inclusion criteria. Analysis used a thematic framework approach, which assisted in the data management, abstraction and description, and finally the explanations. Results Analysis indexed fifty-nine (59) capabilities, charted thirteen (n13) categories, mapped four (n4) themes, which were then interpreted as findings. Findings The four themes identified were Change Management; User Application; Data, Information, and Knowledge; and Innovation. The themes recognize the opportunity to align the application of technical skills towards the capabilities required to deliver authentic PCDHc. Discussion Holistic mindsets are imperative in maintaining the objective of PCDHc. The authors propose that debates regarding professional digital capability persist in being “siloed” and “paternalistic” in nature. They also recommend that the transition to authentic PCDHc requires refocusing (rather than rewriting) current capabilities. The realignment of capabilities towards individual healthcare outcomes, rather than professional obligation, can steer the perspective towards a genuine PCDHc system. Conclusion This scoping review confirms the assumption that digital skills will empower all healthcare stakeholders is incorrect. This review also draws attention to the need for more research to enable digital healthcare systems and services to be designed to realize complex human behaviors and multiple person-centered care requirements. Now more than ever, it is imperative to align healthcare capabilities with technologies to ensure that the practice of PCDHc is the empowering journey for the healthcare user that theory implies.
Digital health research is an emerging discipline that requires easy-to-understand theoretical frameworks and implementation models for digital health providers in health and social care settings. The COVID-19 pandemic has heightened the demand for digital health discipline-specific instruction on how to manage evidence-based digital health transformation. Access to the use of these models guarantees that digital health providers can investigate phenomena using safe and suitable approaches and methods to conduct research and identify answers to challenges and problems that arise in health and social care settings. The COMPASS theory is designed to aid transformation of health and social care environments. A navigational rose of primary quadrants is divided by four main compass points, with person-centred care being central to the philosophy. Two axes produce Cartesian planes that intersect to form a box plot, which can be used to discover human and physical resource weightings to augment digital health research design and implementation. A third continuum highlights stakeholders’ capabilities, which are critical for any multidisciplinary study. The COMPASS mnemonic guides end users through the process of design, development, implementation, evaluation, and communication of digital health transformations. The theory’s foundations are presented and explained in context of the ‘new normal’ of health and social care delivery.
Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how “traditional” health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.
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