scholarly journals Exploring Arts & Health Ethics and Education: Summaries of two online Nordic Arts & Health Research Network meetings

2021 ◽  
Vol 3 (01-02) ◽  
pp. 129-133
Author(s):  
Liisa Laitinen
2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
F Estupiñán-Romero ◽  
J Gonzalez-García ◽  
E Bernal-Delgado

Abstract Issue/problem Interoperability is paramount when reusing health data from multiple data sources and becomes vital when the scope is cross-national. We aimed at piloting interoperability solutions building on three case studies relevant to population health research. Interoperability lies on four pillars; so: a) Legal frame (i.e., compliance with the GDPR, privacy- and security-by-design, and ethical standards); b) Organizational structure (e.g., availability and access to digital health data and governance of health information systems); c) Semantic developments (e.g., existence of metadata, availability of standards, data quality issues, coherence between data models and research purposes); and, d) Technical environment (e.g., how well documented are data processes, which are the dependencies linked to software components or alignment to standards). Results We have developed a federated research network architecture with 10 hubs each from a different country. This architecture has implied: a) the design of the data model that address the research questions; b) developing, distributing and deploying scripts for data extraction, transformation and analysis; and, c) retrieving the shared results for comparison or pooled meta-analysis. Lessons The development of a federated architecture for population health research is a technical solution that allows full compliance with interoperability pillars. The deployment of this type of solution where data remain in house under the governance and legal requirements of the data owners, and scripts for data extraction and analysis are shared across hubs, requires the implementation of capacity building measures. Key messages Population health research will benefit from the development of federated architectures that provide solutions to interoperability challenges. Case studies conducted within InfAct are providing valuable lessons to advance the design of a future pan-European research infrastructure.


2018 ◽  

We spoke to Professor Cathy Creswell about some of the barriers to support for children with anxiety, the Anxiety and Depression in Young people research clinic, and her role as the lead for the Emerging Minds: Action for Child Mental Health research network.


2018 ◽  
Vol 22 (1) ◽  
pp. 50-61 ◽  
Author(s):  
Simon Murphy ◽  
Hannah Littlecott ◽  
Gillian Hewitt ◽  
Sarah MacDonald ◽  
Joan Roberts ◽  
...  

AbstractThe paper reflects on a transdisciplinary complex adaptive systems (T-CAS) approach to the development of a school health research network (SHRN) in Wales for a national culture of prevention for health improvement in schools. A T-CAS approach focuses on key stages and activities within a continuous network cycle to facilitate systems level change. The theory highlights the importance of establishing transdisciplinary strategic partnerships to identify and develop opportunities for system reorientation. Investment in and the linking of resources develops the capacity for key social agents to take advantage of disruption points in the re-orientated system, and engagement activities develop the network to facilitate new social interactions and opportunities for transdisciplinary activities. A focus on transdisciplinary action research to co-produce interventions, generate research evidence and inform policy and practice is shown to play an important part in developing new normative processes that act to self-regulate the emerging system. Finally, the provision of reciprocal network benefits provides critical feedback loops that stabilise the emerging adaptive system and promote the network cycle. SHRN is shown to have embedded itself in the system by securing sustainability funding from health and education, a key role in national and regional planning and recruiting every eligible school to the network. It has begun to reorient the system to one of evidence generation (56 research studies co-produced) and opportunities for data-led practice at multiple levels. Further capacity development will be required to capitalise on these. The advantages of a complex systems approach to address barriers to change and the transferability of a T-CAS network approach across settings and cultures are highlighted.


Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.


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