Digital Biomarkers for supporting transitional care decisions: Protocol for a transnational feasibility study (Preprint)

2021 ◽  
Author(s):  
Despoina Petsani ◽  
Sara Ahmed ◽  
Vasileia Petronikolou ◽  
Eva Kehayia ◽  
Mika Alastalo ◽  
...  
Keyword(s):  
Data Collection ◽  
Large Scale ◽  
Transitional Care ◽  
Care Process ◽  
Local Context ◽  
Pilot Phase ◽  
Living Lab ◽  
Patient Reported ◽  
Living Labs ◽  
Digital Biomarkers

BACKGROUND VITALISE is a H2020 project that aims to harmonize Living Lab procedures and facilitate the access to European Health and Wellbeing research infrastructures. In this context, this study presents a joint research activity (JRA) that will be conducted within VITALISE, in transitional care domain, in order to test and validate the harmonized Living Lab procedures and infrastructures. The collection of data from various sources (ICT, clinical and patient reported outcome measures) demonstrated capacity to assess risk and support decision during care transitions but there is no harmonized way of combining this information. OBJECTIVE This study primarily aims to evaluate the feasibility and benefit of collecting multichannel data across Living Labs on the topic of transitional care and to harmonize the data processes and collection. Secondly, we aim to investigate the collection and use of digital biomarkers and explore initial patterns in the data that demonstrate the potential to predict transition outcomes such as readmissions and adverse events. METHODS The current research protocol presents a multi-center, prospective, observational cohort study that will consist of three phases, running consecutively in multiple sites: a co-creation phase, a testing and simulation phase and a transnational pilot phase. The co-creation phase aims to build a common understanding among different sites, investigate the differences of hospitalization discharge management among countries and the willingness of different stakeholders to use technological solutions in the transitional care process. The testing and simulation phase aims to explore ways of integrating observation of a patient’s clinical condition, patient involvement and discharge education in transitional care. The objective of the simulation phase is to evaluate the feasibility and the barriers that are faced by a healthcare professional in assessing transition readiness. The transnational pilot phase takes input from co-creation and testing and stimulation phase. The aim is to pilot the already designed activities from previous phases and collect data to conduct a first predictive analysis. RESULTS The co-creation phase will be completed by April 2022. The testing and simulation phase will begin in September 2022 and will partially overlap with the deployment of the transnational pilot phase that will start the same month. The data collection of the transnational pilots will be finalized by the end of June 2023. Data processing is expected to be completed by March 2024. The results will consist of guidelines and implementation pathway for large scale study and the analysis for identifying initial patterns in the acquired data. CONCLUSIONS The knowledge acquired though this research will lead to harmonized procedures and data collection for Living Labs that support transitions in care. In addition, this research contributes to the increase in capacity to perform Big Data analytics while accounting for each local context and across Living Labs.

scholarly journals An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology

2020 ◽  
Vol 93 (1107) ◽  
pp. 20190673 ◽  
Author(s):  
Miranda P. Lawell ◽  
Daniel J Indelicato ◽  
Arnold C Paulino ◽  
William Hartsell ◽  
Nadia N. Laack ◽  
...  
Keyword(s):  
Data Collection ◽  
Large Scale ◽  
Improve Patient Care ◽  
Eligibility Criteria ◽  
Data Registry ◽  
Patient Reported ◽  
Treatment Data ◽  
The Usa ◽  
Successful Collaboration

Objective: The Pediatric Proton/Photon Consortium Registry (PPCR) is a comprehensive data registry composed of pediatric patients treated with radiation. It was established to expedite outcomes-based research. The attributes which allow the PPCR to be a successful collaboration are reviewed. Methods and materials: Current eligibility criteria are radiotherapy patients < 22 years treated at one of the 15 US participating institutions. Detailed health and treatment data are collected about the disease presentation and treatment exposures, and annually thereafter, in REDCap (Research Electronic Data Capture). DICOM (Digital Imaging and Communications in Medicine) imaging and radiation plans are collected through MIM/MIMcloud. An optional patient-reported quality-of-life (PedsQL) study is administered at 10 sites. Results: Accrual started October 2012 with 2,775 participants enrolled as of 25 July 2019. Most patients, 62.0%, were treated for central nervous system (CNS) tumors, the most common of which are medulloblastoma (n = 349), ependymoma (n = 309), and glial/astrocytoma tumors (n = 279). The most common non-CNS diagnoses are rhabdomyosarcoma (n = 284), Ewing’s sarcoma (n = 153), and neuroblastoma (n = 130). While the majority of participants are US residents, 18.7% come from 36 other countries. Over 685 patients participate in the PedsQL study. Conclusions: The PPCR is a valuable research platform capable of answering countless research questions that will ultimately improve patient care. Centers outside of the USA are invited to participate directly or may engage with the PPCR to align data collection strategies to facilitate large-scale international research. Advances in knowledge: For investigators looking to carry out research in a large pediatric oncology cohort or interested in registry work, this paper provides an updated overview of the PPCR.

scholarly journals Rehabilitation supported by technology: Protocol for an international co-creation and user experience study (Preprint)

2021 ◽  
Author(s):  
Sylvie Bernaerts ◽  
Nele A. J. De Witte ◽  
Vicky Van der Auwera ◽  
Bert Bonroy ◽  
Luiza Muraru ◽  
...  
Keyword(s):  
Data Collection ◽  
Phase 1 ◽  
Innovative Technology ◽  
Small Scale ◽  
Phase 2 ◽  
Innovative Technologies ◽  
Health And Wellbeing ◽  
Research Activities ◽  
Living Lab ◽  
Living Labs

BACKGROUND Living labs in the health and wellbeing domain have become increasingly common over the past decade but vary in available infrastructure, implemented study designs and outcome measures. Increased transnational collaboration and harmonization can further improve research quality. The Horizon 2020 Project ‘Virtual Health and Wellbeing Living Lab Infrastructure’ (VITALISE) unites 19 partners across 11 countries. VITALISE aims to harmonize Living Lab procedures and open Living Lab Infrastructures to facilitate and promote research activities in the health and wellbeing domain in Europe and beyond. To do so, the VITALISE consortium will conduct joint research activities (JRAs) in the fields included in the care pathway of patients: rehabilitation, transitional care and everyday living environments for the elderly. In line with the expertise of the involved Living Labs, the current protocol will describe the design of the rehabilitation JRA, focusing on the use of innovative technology both for rehabilitation interventions and data collection in a rehabilitation context. OBJECTIVE With this JRA, we primarily aim to gain insight in each Living Lab’s infrastructure and procedures in order to harmonize health and wellbeing Living Lab procedures and infrastructures in Europe and beyond, in particular in the context of rehabilitation. Secondly, we aim to investigate the potential of innovative technologies for rehabilitation through Living Lab methodologies. METHODS The study has a mixed-methods design comprising multiple phases. There are two main phases of data collection, co-creation (phase 1) and small-scale pilots (phase 2), which are preceded by a preliminary harmonization of procedures between the different international Living Labs. An intermediate phase further allows to implement minor adjustments to the intervention or protocol depending on the input that was obtained in the co-creation phase. Six small-scale pilots using innovative technologies for intervention or data collection will be performed across four countries. A third and final phase involves Delphi procedures to reach consensus on harmonized procedures and protocols. RESULTS Phase 1 data collection will begin in March 2022 and phase 2 data collection will begin in June 2022. Results will include output of the co-creation sessions, small-scale pilots and advice on harmonizing procedures and protocols for health and wellbeing Living Labs focusing on rehabilitation. CONCLUSIONS The knowledge gained by the execution of this research will lead to harmonized procedures and protocols in a rehabilitation context for health and wellbeing Living Labs in Europe and beyond. In addition to the harmonized procedures and protocols in rehabilitation, we will also be able to provide new insights for improving implementation of innovative technologies in rehabilitation.

Interpreting Seventeenth-Century Probate Documents: John Carter, Master Carpenter in St Albans

2011 ◽  
pp. 66-83
Author(s):  
Jane Harris ◽  
Pat Howe
Keyword(s):  
Seventeenth Century ◽  
Large Scale ◽  
Local Context ◽  
Social Standing ◽  
Close Proximity ◽  
Market Town ◽  
Consumer Age

This is a study of a successful seventeenth-century carpenter in St Albans, John Carter, using probate and other documents, assisted by a large-scale computer database of St Albans residents of the period. Sections of the article cover his family, his work and his house and its contents, which have been reconstructed from his probate inventory and from knowledge of the structure of other local houses of the period. Carter's social standing is discussed, both in its local context and in relation to previous probate inventory analyses. This micro-study sheds unusual light upon aspects of the life of a 'middling sort' of person, living in a thriving market town in close proximity to London, at the beginning of the consumer age.

scholarly journals Living lab on sharing and circular economy: The case of Turin

2021 ◽  
Vol 27 (1) ◽  
pp. 146045822098727
Author(s):  
Federico Cuomo ◽  
Nadia Lambiase ◽  
Antonio Castagna
Keyword(s):  
Circular Economy ◽  
Common Ground ◽  
Swot Analysis ◽  
Research Question ◽  
Environmental Benefits ◽  
Production Cycle ◽  
Living Lab ◽  
Starting Point ◽  
Living Labs ◽  
Past Experiences

Cities with their innovative capacity are key places to address critical climate, environmental and health challenges. Urban experimentations, such as Living Labs, can represent a starting point to reintroduce resources into the production cycle and reduce environmental impacts, embracing the paradigm of the circular economy (CE). According to recent studies, Living Labs at a city scale could generate significant environmental benefits, improvements in quality of life and positive impacts on citizens’ health.1 This paper aims at presenting the case of the Torino Living Lab on Sharing and Circular Economy (LLSC) to point out possible future scenarios of urban sustainable policies. The case study is analysed in five sections: (1) the description of the new permanent laboratory proposed by the City of Turin; (2) the past experiences of Living Labs in Turin; (3) the birth of LLSC and the involvement strategy; (4) the introduction of the eight admitted experimentations. In the light of the results collected, the last paragraph (5) came up with the Strengths, Weaknesses, Opportunities, Treaths (SWOT) analysis in the LLSC. Eventually, it deals with the research question by offering a common ground for global and local policies focused on sustainability and CE.

Nurses’ Experiences of Transitional Care in Multiple Chronic Conditions

2021 ◽  
pp. 108482232110021
Author(s):  
Alireza Nikbakht Nasrabadi ◽  
Leila Mardanian Dehkordi ◽  
Fariba Taleghani
Keyword(s):  
Patient Safety ◽  
Data Collection ◽  
Continuity Of Care ◽  
Chronic Conditions ◽  
Transitional Care ◽  
Major Elements ◽  
Study Data ◽  
Multiple Chronic Conditions ◽  
University Hospitals ◽  
Levels Of Care

Transitional care is a designed plan to ensure the continuity of care received by patients as they transfer between different locations or levels of care. The aim of this paper is to explore nurses’ experiences of transitional care in multiple chronic conditions. A qualitative method with a conventional content analysis approach was utilized. The study was conducted at university hospitals in 2 big cities (Isfahan and Tehran) of Iran. This study is performed from November 2018 to December 2019 using deep, semi-structured, and face-to-face interviews which are focused on nurses’ experiences of transitional care. Data collection continued until saturation was reached. Finally, 15 nurses take part in this study. Data collection and data analysis were conducted concurrently. Data were analyzed using Graneheim and Lundman’s techniques. Two main themes providing a descriptive summary of the major elements of transitional care identified: “threat to patient safety” and “Care breakdown”. Findings showed an exclusive image of unsafe transitional care which was done unplanned without appropriate delegating care to family and threat patient safety. There is still a gap in the transition from hospital to home. Nursing managers can address this issue by creating a culture of teamwork, training competent nurses by continuum education, and more supervision of nursing care. Policymakers can ensure continuity of care by developing policies and programs about transitional care.

scholarly journals The Defining Characteristics of Agroecosystem Living Labs

2021 ◽  
Vol 13 (4) ◽  
pp. 1718
Author(s):  
Chris McPhee ◽  
Margaret Bancerz ◽  
Muriel Mambrini-Doudet ◽  
François Chrétien ◽  
Christian Huyghe ◽  
...  
Keyword(s):  
Food Systems ◽  
Agricultural Sector ◽  
External Factors ◽  
Social Challenges ◽  
Rural Living ◽  
Living Lab ◽  
Challenges And Opportunities ◽  
Unique Nature ◽  
Living Labs ◽  
High Uncertainty

In response to environmental, economic, and social challenges, the living labs approach to innovation is receiving increasing attention within the agricultural sector. In this paper, we propose a set of defining characteristics for an emerging type of living lab intended to increase the sustainability and resilience of agriculture and agri-food systems: the “agroecosystem living lab”. Drawing on first-hand knowledge of case studies of large initiatives from Canada and France and supported by eight other cases from the literature, we highlight the unique nature of agroecosystem living labs and their distinct challenges with respect to their aims, activities, participants, and context. In particular, these living labs are characterized by exceptionally high levels of scientific research; long innovation cycles with high uncertainty due to external factors; and the high number and diversity of stakeholders involved. Both procedurally and conceptually, we link to earlier efforts undertaken by researchers seeking to identify urban living labs and rural living labs as distinct, new types of living labs. By highlighting what makes agroecosystem living labs unique and their commonalities with other types of living labs, we hope to encourage their further study and help practitioners better understand their implementation and operational challenges and opportunities.

scholarly journals Patient-reported recovery in upper abdominal cancer surgery care: A prospective study

2021 ◽  
Vol 104 (2) ◽  
pp. 003685042110169
Author(s):  
Anna Johansson ◽  
Jessica Karlsson ◽  
Victoria Fomichov ◽  
Anna Lindhoff Larsson ◽  
Per Sandström ◽  
...  
Keyword(s):  
Physical Symptoms ◽  
Postoperative Recovery ◽  
Cancer Surgery ◽  
Social Dimension ◽  
University Hospital ◽  
Care Process ◽  
Five Dimensions ◽  
Patient Reported ◽  
Upper Abdominal ◽  
A Prospective Study

The study aimed to describe and analyse patient-reported recovery in patients after upper abdominal cancer surgery. This study had a quantitative design and patients were consecutively included in a university hospital in southern Sweden. Twenty-four patients answered the Postoperative Recovery Profile (PRP) questionnaire at three measurement points. All five dimensions were affected. In the physical symptoms dimension, the majority of patients reported a lack of energy upon discharge. High levels of anxiety were reported. Over 50% of patients reported some degree of depressed mood at all three measurement points. In the social dimension, the majority of patients reported some degree of being dependent on help from others in everyday life at 4 weeks after discharge. Few patients are fully recovered at 4 weeks after discharge. Individual patient-reported recovery estimates may be valuable in identifying and planning interventions tailored to each patient’s needs throughout the care process.

LARGE-SCALE PREDICTOR VALIDATION IN PROJECT A: DATA COLLECTION PROCEDURES AND DATA BASE PREPARATION

1990 ◽  
Vol 43 (2) ◽  
pp. 301-311 ◽  
Author(s):  
WINNIE Y. YOUNG ◽  
JANIS S. HOUSTON ◽  
JAMES H. HARRIS ◽  
R. GENE HOFFMAN ◽  
LAURESS L. WISE
Keyword(s):  
Data Collection ◽  
Data Base ◽  
Large Scale

FRI0562 THE PERSPECTIVE OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES: RESULTS OF A EUROPE-WIDE SURVEY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 883-883
Author(s):  
A. Alunno ◽  
E. Mosor ◽  
T. Stamm ◽  
P. Studenic
Keyword(s):  
Young People ◽  
Qualitative Study ◽  
Personal Experience ◽  
Large Scale ◽  
Young Patients ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Research Support ◽  
Patient Reported

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

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