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Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework.

ABSTRACT: Background: Facilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim. The objective of the study is to reflect on stakeholders' recommendations on how to improve the health data framework of this country. Methods: We analysed the recommendations collected as part of a qualitative study including 48 expert stakeholders from Switzerland that have been working principally with health databases. Recommendations were divided in themes and subthemes according to applied thematic analysis. Results: Stakeholders recommended several potential improvements of the health data framework in Switzerland. At the general level of mind-set and attitude, they suggested to foster the development of an explicit health data strategy, better communication and the respect of societal preferences. In terms of infrastructure, there were calls for the creation of a national data center, the improvement of IT solutions and the use of a Unique Identifier for patient data. Lastly, they recommended harmonising procedures for data access and to clarify data protection and consent rules. Conclusion: Recommendations show several potential improvements of the health data framework, but they have to be reconciled with existing policies, infrastructures and ethico-legal limitations. Achieving a gradual implementation of the recommended solutions is the preferable way forward for Switzerland and a lesson for other countries that are also seeking to improve health data access for public health and research purposes.

SUBMITTER: Martani A

PROVIDER: S-EPMC8200489 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Introduction: Health research is gradually embracing a more collectivist approach, fueled by a new movement of open science, data sharing and collaborative partnerships. However, the existence of systemic contradictions hinders the sharing of health data and such collectivist endeavor. Therefore, this qualitative study explores these systemic barriers to a fair sharing of health data from the perspectives of Swiss stakeholders. Methods: Purposive and snowball sampling were used to recruit 48 experts active in the Swiss healthcare domain, from the research/policy-making field and those having a high position in a health data enterprise (e.g., health register, hospital IT data infrastructure or a national health data initiative). Semi-structured interviews were then conducted, audio-recorded, verbatim transcribed with identifying information removed to guarantee the anonymity of participants. A theoretical thematic analysis was then carried out to identify themes and subthemes related to the topic of systemic fairness for sharing health data. Results: Two themes related to the topic of systemic fairness for sharing health data were identified, namely (i) the hypercompetitive environment and (ii) the legal uncertainty blocking data sharing. The theme, hypercompetitive environment was further divided into two subthemes, (i) systemic contradictions to fair data sharing and the (ii) need of fair systemic attribution mechanisms. Discussion: From the perspectives of Swiss stakeholders, hypercompetition in the Swiss academic system is hindering the sharing of health data for secondary research purposes, with the downside effect of influencing researchers to embrace individualism for career opportunities, thereby opposing the data sharing movement. In addition, there was a perceived sense of legal uncertainty from legislations governing the sharing of health data, which adds unreasonable burdens on individual researchers, who are often unequipped to deal with such facets of their data sharing activities.

Project description:BackgroundAs universal health coverage becomes the norm in many countries, it is important to determine public priorities regarding benefits to include in health insurance coverage. We report results of participation in a decision exercise among residents of Switzerland, a high-income country with a long history of universal health insurance and deliberative democracy.MethodsWe adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex healthcare allocation decisions into easily understandable choices, for use in Switzerland. We conducted CHAT exercises in twelve Swiss cities with recruitment from a range of socio-economic backgrounds, taking into account differences in language and culture.ResultsCompared to existing coverage, a majority of 175 participants accepted greater general practice gatekeeping (94%), exclusion of invasive life-sustaining measures in dying patients (80%), longer waiting times for non-urgent episodic care (78%), greater adherence to cost-effectiveness guidelines in chronic care (66%), and lower premium subsidies (51%). Most initially chose greater coverage for dental care (59%), quality of life (57%), and long-term care (90%). During group deliberations, participants increased coverage for out-of-pocket costs (58%) and mental health to current levels (41%) and beyond current levels for rehabilitation (50%), and decreased coverage for quality of life to current levels (74%). Following group deliberation, they tended to change their views back to below current coverage for help with out-of-pocket costs, and back to current levels for rehabilitation. Most participants accepted the plan as appropriate and fair. A significant number would have added nothing.ConclusionSwiss participants who have engaged in a priority setting exercise accept complex resource allocation trade-offs in healthcare coverage. Moreover, in the context of a well-funded healthcare system with universal coverage centered on individual choice, at least some of our participants believed a fully sufficient threshold of health insurance coverage was achieved.

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Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework.

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