Nationwide citizen access to their health data: analysing and comparing experiences in Denmark, Estonia and Australia.
ABSTRACT: Most 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.Data on the type and level of access citizens have to their own health data in three countries was gathered from public sources.Data 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.The 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.
Project description:BACKGROUND:The secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information. OBJECTIVE:The aim of this project was to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process using citizens' juries. METHODS:Two 3-day citizens' juries, of 17 citizens each, were convened to reflect UK national demographics from 355 eligible applicants. Each jury addressed the mission "To what extent should patients control access to patient records for secondary use?" Jurors heard from and questioned 5 expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate among themselves, including discussion and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and at end of the process. RESULTS:At the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt out, 6 favoring opt in, and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whereas jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas 2 moved toward more patient control over patient records. CONCLUSIONS:The findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual's right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to opt out if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less skeptical about health data sharing, as they became better informed of its benefits and risks.
Project description:Background:Pharmacists hold to their promise to foster, implement and promote the health of the population and to prevent disease, given their knowledge, skills, and proximity to the locals. The objective of this study was to foster equality and cost-effectiveness in the distribution and sale of masks to all Taiwanese citizens, in response to the COVID-19 pandemic. Methods:All 6336 special community pharmacies participating in the NHI (National Health Insurance) served as mask-selling sites. Access to masks by citizens was determined and controlled, based on the weekly rationing of the number of purchasable masks per citizen and the last digit of their NHI card number. Masks were available on different weekdays for holders of cards ending with odd and even numbers, except on Sundays, when everyone was eligible to buy a mask. Results:Implementing the program has provided equal access to masks for all citizens across Taiwan. It has stabilized the pricing of masks and mitigated the public's anxiety of a perceived likely market shortage. Conclusion:The community pharmacy-based approach to the distribution of prevention face masks to citizens represents a new and innovative engagement of pharmacists in public health promotion and protection initiatives. Community pharmacies can greatly improve the efficiency, reliability, and cost-saving of the distribution of public health resources to local communities, especially in the face of an epidemic.
Project description:BACKGROUND:Citizen-led accountability initiatives are a critical strategy for redressing the causes of health inequalities and promoting better health system governance. A growing body of evidence points to the need for putting power relations at the forefront of understanding and operationalizing citizen-led accountability, rather than technical tools and best practices. In this study, we apply a network lens to the question of how initiatives build collective power to redress health system failures affecting marginalized communities in three municipalities in Guatemala. METHODS:Network mapping and interpretive discussions were used to examine relational qualities of citizen-led initiatives' networks and explore the resources they offer for mobilizing action and influencing health accountability. Participants in the municipal-level initiatives responded to a social network analysis questionnaire focused on their ties of communication and collaboration with other initiative participants and their interactions with authorities regarding health system problems. Discussions with participants about the maps generated enriched our view of what the ties represented and their history of collective action and also provided space for planning action to strengthen their networks. RESULTS:Our findings indicate that network qualities like cohesiveness and centralization reflected the initiative participants' agency in adapting to their sociopolitical context, and participants' social positions were a key resource in providing connection to a broad base of support for mobilizing collective action to document health service deficiencies and advocate for solutions. Their legitimacy as "representatives of the people" enabled them to engage with authorities from a bolstered position of power, and their iterative interactions with authorities further contributed to develop their advocacy capabilities and resulted in accountability gains. CONCLUSIONS:Our study provided evidence to counter the tendency to underestimate the assets and capabilities that marginalized citizens have for building power, and affirmed the idea that best-fit, with-the-grain approaches are well-suited for highly unequal settings characterized by weak governance. Efforts to support and understand change processes in citizen-led initiatives should include focus on adaptive network building to enable contextually-embedded approaches that leverage the collective power of the users of health services and grassroots leaders on the frontlines of accountability.
Project description:BACKGROUND:Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. METHODS:We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs. RESULTS:This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. CONCLUSIONS:There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.
Project description:Citizen report cards on health care providers have been identified as a potential means to increase citizen engagement, provider accountability and health systems performance. Research in high-income settings indicates that the wording, presentation and display of performance information are critical to achieve these goals. However, there are limited insights on developing effective report card designs for middle- and low-income settings. We conducted cognitive interviews to assess consumers' understanding, interpretation of and preferences for displaying information for a health care report card in rural Tajikistan. We recruited a convenience sample of 40 citizens (20 women and 20 men aged 18-45) from rural areas of two provinces of Tajikistan (Soghd and Khatlon oblasts). The interview protocol was adapted from the model of cognitive interviews used in social science research to improve survey questionnaires. We used multivariate regression to assess understanding and interpretation of the report card; chi2 tests to assess differences in preferences for displaying information; and tests of proportions to assess the preferred comparison group. Respondents understood the main idea of the report card and are not confused by the indicators or display. However, many respondents had difficulties making comparisons, and when asked to identify worst-performing services. Respondents preferred detailed rankings using school grades, comparisons of their local clinic with the regional or national average performance, and the use of color in the report card. We found some heterogeneity across the two provinces. Overall, our findings are promising regarding the citizens' comprehension of health care report cards in rural Tajikistan, while underscoring the challenges of effectively providing health care performance information to communities. Cognitive interviews and iterative testing can support an effective implementation of reporting initiatives.
Project description:Plain language summary:Research should benefit society at large. Involving citizens those who are affected by research may not only increase the quality, but can also push research towards generating greater societal benefits and relevant outcomes for citizens. Including citizens in research also has ethical implications, which necessitate structured guidance on 'how to' meaningfully involve them. In our project, we invited a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates to co-create a guide on 'how to' meaningfully involve citizens in research. In five consecutive workshops, we discussed how the characteristics of interactions between researchers and citizens (e.g., building trustful relationships and communication) and what a possible project steering structure enabling meaningful public involvement in research could look like. As a result of these workshops, the PPIE 'How to' Guide for Researchers was developed to support the implementation of 'Patient and Public Involvement and Engagement' (PPIE) activities and informed a PPIE Implementation Programme funding public involvement activities in Austria. Abstract:Involving citizens in research is not widely utilised across research disciplines and countries. It requires the readiness of researchers and their organisations as well as guides on 'how to' successfully involve citizens in a meaningful way. Including the patient and citizen voice in research activities has been most frequently demonstrated in health research, however, is implemented along various degrees of involvement - from passively receiving information about science to actively involving the citizens in steering projects and research activities. In this commentary, we aim to report a multi-stakeholder co-creation process developing 'Patient and Public Involvement and Engagement' (PPIE) activities across disciplines to provide guidance for researchers and the public. We use Ludwig Boltzmann Society's (LBG) organisational framework as a case study, hence it consists of research institutes ranging from the life sciences to humanities and therefore represents a well-suited research environment for this endeavour. In a co-creation approach - to accomplish a shared understanding of public involvement in research among different stakeholders - a multi-stakeholder group comprising 11 researchers from natural sciences, life sciences, social sciences and humanities, and 13 citizens (such as patient advocates, young people and citizen scientists) were involved. In five consecutive workshops, we co-developed the nature of interactions between citizens and researchers, as well as governance structures enabling meaningful involvement in research. The workshops' content was informed by an initial literature review. As a result of this process, the PPIE 'How to' Guide for Researchers was developed to support the implementation of involvement activities in their research projects according to the public involvement principles. These principles informed assessment criteria for the newly established PPIE Implementation Programme at LBG. It provides funding and support for public involvement activities in research to embed a sustainable and meaningful implementation of public involvement activities in Austria.
Project description:BACKGROUND:The language of "participant-driven research," "crowdsourcing" and "citizen science" is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more "democratic," "patient-centric," or "lay" alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation. DISCUSSION:We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of "citizen science" outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of "public engagement" when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the "care.data" project of the National Health Service in England, and its proactive uses in the "Precision Medicine Initiative" of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of "citizen science," the contexts in which it is used, and its demands with respect to participation, engagement, and governance.
Project description:The European-Commission-funded project 'Citclops' (Citizens' observatory for coast and ocean optical monitoring) developed methods, tools and sensors, which can be used by citizens to monitor natural waters, with a strong focus on long-term data series related to environmental sciences. The new sensors, based on optical technologies, respond to a number of scientific, technical and societal objectives, ranging from more precise monitoring of key environmental descriptors of the aquatic environment (water colour, transparency and fluorescence) to an improved management of data collected with citizen participation. The sensors were tested, calibrated, integrated on several platforms, scientifically validated and demonstrated in the field. The new methods and tools were tested in a citizen-science context. The general conclusion is that citizens are valuable contributors in quality and quantity to the objective of collecting, integrating and analysing fragmented and diverse environmental data. An integration of these data into data-analysis tools has a large potential to support authoritative monitoring and decision-making. In this paper, the project's objectives, results, technical achievements and lessons learned are presented.
Project description:Monitoring of cyanobacteria in freshwater ecosystems is a complex task, which is time consuming and expensive due to the chaotic population dynamics and highly heterogeneous distribution of cyanobacteria populations in water bodies. The financial cost constitutes a strong limitation for the implementation of long-term monitoring programs in developing countries, particularly in Africa. The work presented here was performed in the framework of an international project addressing the sustainable monitoring and management of surface water resources used for the production of drinking water in three African countries. We tested the potential of a citizen approach for monitoring cyanobacterial blooms, which are a growing threat to the drinking water supply. This pilot study was designed, implemented and evaluated in close interaction with the Pasteur Institute of the Ivory Coast and with the populations of three villages located on the shoreline of a freshwater lagoon located near Abidjan city. Based on the use of a smartphone application, the citizens of the three villages were invited to report water color changes, as these changes could reflect cyanobacteria proliferations. A two-year experimentation period has shown that it is possible to mobilize the local populations to monitor cyanobacterial blooms. The data collected by citizens were consistent with the data obtained by a classical monitoring of cyanobacteria performed over seven months, but it appeared that new approaches were needed to validate the citizen data. This participatory approach also provided great improvements to the understanding and awareness of local populations regarding water quality and cyanobacterial bloom issues. Finally, we discuss some of the difficulties and limitations of our participatory monitoring approach that should be considered by further implementations. Despite these difficulties, our work suggests that citizen monitoring is a promising approach that may complement the classical approach to sustainable monitoring of cyanobacteria in developing countries.
Project description:BACKGROUND: Around the world, researchers are using the observations and experiences of citizens to describe patterns in animal populations. This data is often collected via ongoing sampling or by synthesizing past experiences. Since elasmobranchs are relatively rare, obtaining data for broad-scale trend analysis requires high sampling effort. Elasmobranchs are also relatively large and conspicuous and therefore it may be possible to enlist recreational divers to collect data on their occurrence and relative abundance from daily dive activities. For this, however, a good understanding of the value of data collected by recreational divers is essential. METHODOLOGY/PRINCIPAL FINDINGS: Here, we explore the value of recreational divers for censusing elasmobranchs using a diverse set of data sources. First, we use a simulation experiment to explore detection rates of the roving diver technique, used by recreational divers, across a range of fish densities and speeds. Next, using a field survey, we show that inexperienced recreational divers detect and count elasmobranchs as well as experienced recreational divers. Finally, we use semi-structured interviews of recreational dive instructors to demonstrate the value of their recollections in terms of effort and their descriptions of spatial and temporal distributions of sharks in Thailand. CONCLUSIONS/SIGNIFICANCE: Overall, this study provides initial ground-work for using recreational divers for monitoring elasmobranch populations. If used appropriately, citizen-collected data may provide additional information that can be used to complement more standardized surveys and to describe population trends across a range of spatial and temporal scales. Due to the non-extractive nature of this data, recreational divers may also provide important insight into the success of conservation initiatives, such as shark sanctuaries and no-take zones.