Research Priorities to Increase Confidence in and Acceptance of Health Preference Research:What Questions Should be Prioritized Now?

Background and Objective: There has been an increase in the study and use of stated-preference methods to inform medicine development decisions. The objective of this study was to identify prioritized topics and questions relating to health preferences based on the perspective of members of the preference research community. Methods: Preference research stakeholders from industry, academia, consultancy, health technology assessment/regulatory, and patient organizations were recruited using professional networks and preference-targeted e-mail listservs and surveyed about their perspectives on 19 topics and questions for future studies that would increase acceptance of preference methods and their results by decision makers. The online survey consisted of an initial importance prioritization task, a best-worst scaling case 1 instrument, and open-ended questions. Rating counts were used for analysis. The best-worst scaling used a balanced incomplete block design. Results: One hundred and one participants responded to the survey invitation with 66 completing the best-worst scaling. The most important research topics related to the synthesis of preferences across studies, transferability across populations or related diseases, and method topics including comparison of methods and non-discrete choice experiment methods. Prioritization differences were found between respondents whose primary affiliation was academia versus other stakeholders. Academic researchers prioritized methodological/less studied topics; other stakeholders prioritized applied research topics relating to consistency of practice. Conclusions: As the field of health preference research grows, there is a need to revisit and communicate previous work on preference selection and study design to ensure that new stakeholders are aware of this work and to update these works where necessary. These findings might encourage discussion and alignment among different stakeholders who might hold different research priorities. Research on the application of previous preference research to new contexts will also help increase the acceptance of health preference information by decision makers.</p

Research Priorities to Increase Confidence in and Acceptance of Health Preference Research: What Questions Should be Prioritized Now?

BACKGROUND AND OBJECTIVE: There has been an increase in the study and use of stated-preference methods to inform medicine development decisions. The objective of this study was to identify prioritized topics and questions relating to health preferences based on the perspective of members of the preference research community. METHODS: Preference research stakeholders from industry, academia, consultancy, health technology assessment/regulatory, and patient organizations were recruited using professional networks and preference-targeted e-mail listservs and surveyed about their perspectives on 19 topics and questions for future studies that would increase acceptance of preference methods and their results by decision makers. The online survey consisted of an initial importance prioritization task, a best-worst scaling case 1 instrument, and open-ended questions. Rating counts were used for analysis. The best-worst scaling used a balanced incomplete block design. RESULTS: One hundred and one participants responded to the survey invitation with 66 completing the best-worst scaling. The most important research topics related to the synthesis of preferences across studies, transferability across populations or related diseases, and method topics including comparison of methods and non-discrete choice experiment methods. Prioritization differences were found between respondents whose primary affiliation was academia versus other stakeholders. Academic researchers prioritized methodological/less studied topics; other stakeholders prioritized applied research topics relating to consistency of practice. CONCLUSIONS: As the field of health preference research grows, there is a need to revisit and communicate previous work on preference selection and study design to ensure that new stakeholders are aware of this work and to update these works where necessary. These findings might encourage discussion and alignment among different stakeholders who might hold different research priorities. Research on the application of previous preference research to new contexts will also help increase the acceptance of health preference information by decision makers

Potential for a Circular Autopoietic Economy on Canavese Territory

The aim of this gigamap is to describe and summarize a student work carried out during the semester course Open Systems Design at Politecnico Torino. The map is one of the outputs from an analysis of the Canavese, Piedmont region and subsequently an in-depth study of the relationships and “flows” with certain “currencies” between some selected economic and public actors. Canavese is a historical-geographical area located in the province of Turin, Italy; it’s full of great natural and geological spots, with a strong enogastronomic identity, historical re-enactments, a well-known manufacture sector like the ceramic of Castellamonte, as well as the leading high-tech branch like Arduino. Through the approach deriving from systemic design, it was possible to identify some strategies for the creation of new networks aimed at transforming the economy and production processes from linear to circular approach. Five types of “circular flows” were assessed and “designed into” the current linear system, thus proposing an improved economy based on circularity: flows of matter (energy/CO2, water, materials), economic flows, and social flows. The Gigamap will be presented to stakeholders in a public hearing and supposedly be used to illustrate and incubate a circular economy that is more resilient and more regenerative. Reading the map The reading should start at the top left, where the abstract is located, next, there is an outline that shows the connections between the five topics investigated. Subsequently, there is a timeline with some fundamental events in the history of the Canavese. In the center there is the circularity map with the main cities, focusing on new opportunities of circular flows between the 15 analysed economic actors. At the bottom, some general data and on the right a brief description of the role and territorial qualities of the companies. Lastly, there is a summary of the emerging properties

Surveying Ethnic Minorities and Migrants:A Legal Framework for Collecting Data and Other Methodological Issues

Legal regulations designed to protect individual liberties and personal data has significant implications for survey design when it restricts access to such populations and to information regarding ethnic background, religion, or race. This is a particularly significant concern for researchers using quantitative surveys. Working Group 3 (WG3) was asked to reflect on these challenges before analyzing the results of the survey mapping conducted by WG1 and WG2. This report describes the background for collecting data concerning EMMs in Europe by: 1. Emphasizing the relevant EU legal frameworks pertaining to data collection in the EU and some of their implications for conducting surveys of immigrants and ethnic minorities. 2. Reviewing and evaluating the empirical knowledge underlying these frameworks and specific data collection, analysis, and reporting practices. 3. Providing an overview of the methodological challenges faced by researchers who survey EMMs. 4. Alerting EMM survey data producers and data users to the range of integration indicators that could inform their future data production and data analysis efforts

Chapter 16: the battle of the Aegates Islands, 241 BC: mapping a naval encounter, 2005-2019

The Battle of the Aegates Islands is significant as the naval engagement that ended the First Punic War and the only ancient naval battle site that has been located in the archaeological record. The Egadi Islands survey is a collaboration between the Soprintendenza del Mare, RPM Nautical Foundation, and Global Underwater Explorers, surveying an area of 270 km2 with the main concentration of the battle spread over 4 km2 . This chapter provides an overview of the 2005-2019 maritime archaeological survey of the battle site, detailing the 23 bronze warship rams that have been found on site, along with helmets, swords, and cargo. The finds reveal cross-cultural interactions in the mid-3rd century BC, as well as the earliest assemblage of Roman and Carthaginian military equipment

Attività di ricerca svolta per l'individuazione di sabbie relitte sulla piattaforma siciliana nell'area prospicente il golfo di Gela.

A seguito della stipula della convenzione “Progetto di ricerca finalizzato all‟individuazione di sabbie relitte sulla piattaforma siciliana nell‟area prospicente il golfodi Gela” siglato in data 19 aprile 2012 tra il Commissario straordinario per l‟attuazione degli interventi per la mitigazione del rischio idrogeologico nella regione siciliana previsti nell‟accordo di programma siglato il 30.03.2010 e l‟Istituto per l‟Ambiente Marino Costiero del (IAMC) del Consiglio Nazionale delle Ricerche (CNR) è stato progettato e realizzato un survey geofisico mirato alla valutazione dei potenziali reservoir di sabbie relitte presenti nell‟area al fine di garantire la reale comprensione delle potenzialità dei giacimenti sabbiosi da utilizzarsi come fonti di materia prima per il ripascimento dei litorali. Il survey geofisico è stato realizzato in due fasi: una prima fase esplorativa ed una seconda fase di approfondimento. Il presente Rapporto Tecnico riporta una descrizione ed interpretazione accurata delle informazioni relative alle diverse fasi di indagine del survey geofisico e della campionatura della seconda fase di ricerca relativa all‟integrazione della convenzione sopra menzionata e le valutazioni conclusive dell‟intera attività di ricerca svolta. Il lavoro effettuato durante la prima fase di indagine, in accordo alle indicazio ni riportate nell‟Allegato Tecnico della convenzione, ha visto la realizzazione di: i) un survey geofisico tramite multibeam, sparker e subottom profiler di un‟area precedentemente individuata ii) il campionamento di 4 carote di sedimento tramite vibrocaro tiere, iii) l‟analisi mineralogica e chimica dei campioni prelevati in ottemperanza alle indicazioni riportate nella Tabella 2.1c del “Manuale per la Movimentazione di Sedimenti Marini” redatto da ICRAM ed APAT iv) analisi mineralogica e del colore di un numero discreto di campioni di sabbia prelevati sul litorale di Pachino (Sicilia sud-orientale). Le fasi relative al survey geofisico nell‟area di interesse nonché il prelievo e il campionamento delle carote di sedimento nell‟area antistante il Golfo di Gel a hanno visto la partecipazione del Dr. Gianluca Sabatino come osservatore per parte del Commissario Straordinario per le Emergenze. Il survey geofisico effettuato ha permesso di definire in maniera accurata e puntuale le geometrie e le volumetrie del depo sito, mentre la campionatura realizzata (4 carote lunghe 3 metri) non ha permesso di definire in maniera certa la tipologia di materiale presente all‟interno del giacimento, nonché la sua omogeneità verticale. La tipologia di sedimento a cumuli, non tipica di sistemiclassici di depositi a barre e la relativa forte variabilità spaziale del giacimento, non ha infatti permesso, con il campionamento effettuato, di intercettare in maniera incontrovertibile il giacimento e determinarne pertanto la tipologia e lo stato di omogeneità sedimentologica. Si è 5 ritenuto pertanto necessario, al fine di valutare su base certa la struttura e tipologia di sedimento, un‟integrazione della fase di campionatura a supporto della successiva fase di dragaggio e prelievo per ripascimento. Nello specifico, è stato considerato necessario il campionamento (tramite vibrocarotiere) di 4 carote di lunghezza non inferiore a 6 metri nell‟area all‟interno della quale il giacimento di sabbie relitte appare più superficiale rispetto al livello del fondo marino. Inoltre, la fase di indagine proposta è stata considerata necessaria per la redazione di un piano di caratterizzazione finalizzato alla fase di estrazione e dragaggio delle sabbie relitte, in accordo con le linee guida espresse all‟interno del “Manuale per la movimentazione di sedimenti marini” redatto da ICRAM. Il lavoro effettuato, in accordo alle indicazioni riportate nell‟Allegato Tecnico dell‟integrazione alla convenzione, ha visto i) il campionamento di 4 carote di sedimento tramite vibrocarotiere, ii) l‟analisi mineralogica, granulometrica e chimica dei campioni prelevati con percentuale di sabbia significativa in ottemperanza alle indicazioni riportate nella Tabella 2.1c del “Manuale per la Movimentazione di Sedimenti Marini” redatto da ICRAM ed APAT

Patients as research partners in preference studies: learnings from IMI-PREFER

Plain English summary Research about patients’ preferences for medicinal products and treatments is growing. Such research could be improved if patients were involved as ‘research partners,’ that is, as active members of the study team itself. To date, however, little is known about the actual experience of involving patients as partners in such research. This paper presents learnings from involving patients as partners in 8 case studies conducted as part of IMI-PREFER, a big, European-based project which aimed to develop recommendations about how to conduct preference research. Involving patients as partners led to improvements in the: (1) quality of the research and research process; (2) recruitment of participants; (3) content and design of patient-facing informational materials; and, (4) how and what study results were shared with patient communities. Our findings showed that it is important to plan for patient partners’ involvement early on in the design of the preference study so as to ensure that they are fully integrated into the research team and their opportunity to contribute to all stages of the research is optimized. Such planning should address how patient partners will be paid, what their role responsibilities will include, how and when they will be trained and educated, and how they will be supported throughout the course of the study. Having a clearly stated purpose for involving patients as research partners, selecting patient partners who have had prior research experience and relationships with the researchers, and having multiple patient partners on the study team are all also helpful in supporting successful patient involvement. We need more people to share their experiences with involving patient partners in preference research so that we can continue to improve how this is done