P14.18 Patient and Public Involvement to define patient-centred outcomes from National Cancer Datasets

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii41-ii41
Author(s):  
L Pakzad-Shahabi ◽  
C Cherrington ◽  
N Brassil ◽  
P Even ◽  
D Gardner ◽  
...  
Keyword(s):  
Social Life ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Low Grade ◽  
Patient Centered ◽  
Cancer Data ◽  
Primary Brain Tumour ◽  
Wide Range ◽  
The Impact

Abstract BACKGROUND GlioCova uses linked national cancer data on all 51 000 adult patients with a primary brain tumour in England (2013 - 2018) to understand patterns of care, treatment, and outcomes in patients with glioma (http://wwwf.imperial.ac.uk/blog/gliocova/). A key aim is the use of patient and carer input in defining patient-centered outcomes. We have held multiple Patient & Public Involvement (PPI) sessions with patients and carergivers and data analysts to understand what patient and caregivers want to know about brain tumours. MATERIAL AND METHOD We used a modified Delphi method. The online PPI sessions (Zoom) consisted of two presentations, open discussions, and Q&As. We made the sessions as interactive as possible by using Mentimeter and an interactive online white board (Explain Everything). Pre-reading material was circulated via email. Attendees (6–14 per session) covered a wide range of ages (30–75), diagnoses (GBM, recurrent gliomas, low grade gliomas, ependymoma); patients, caregivers, neuro-oncology staff, data analysts and basic scientists. Work was conducted in line with the INVOLVE PPI guidance. RESULTS We identified four questions that were of interest to patients and had correlates in the data: Patients and caregivers were also interested in the impact of diet, quality of life, social life, and exercise. However, these data cannot be answered using the current national data. CONCLUSION Our PPI work has helped us to identify and prioritise questions to ask of the data. Ongoing PPI work will provide a wider perspective and identify knowledge gaps for future research. Patients and caregivers report feeling empowered, being part of a team, feeling like they had given something back and done something meaningful for the research community and other patients. Patients and caregivers also felt that they had an enriched understanding of the data that is collected. As this process is an iterative process, we will hold more PPI sessions to identify and prioritise topics to analyse.

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

BACKGROUND Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. OBJECTIVE With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. METHODS In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). RESULTS In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. CONCLUSIONS This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review

10.2196/19375 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e19375
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

Background Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. Objective With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. Methods In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). Results In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. Conclusions This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

The Effects of Technology Supports on Community Grocery Shopping Skills for Students With Intellectual and Developmental Disabilities: A Meta-Analysis

2021 ◽  
pp. 016264342198997
Author(s):  
Sojung Jung ◽  
Ciara Ousley ◽  
David McNaughton ◽  
Pamela Wolfe
Keyword(s):  
Developmental Disabilities ◽  
Positive Impact ◽  
Single Case ◽  
Effect Sizes ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Positive Effects ◽  
Analytic Review ◽  
Wide Range ◽  
The Impact

In this meta-analytic review, we investigated the effects of technology supports on the acquisition of shopping skills for students with intellectual and developmental disabilities (IDD) between the ages of 5 and 24. Nineteen single-case experimental research studies, presented in 15 research articles, met the current study’s inclusion criteria and the What Works Clearinghouse (WWC) standards. An analysis of potential moderators was conducted, and we calculated effect sizes using Tau-U to examine the impact of age, diagnosis, and type of technology on the reported outcomes for the 56 participants. The results from the included studies provide evidence that a wide range of technology interventions had a positive impact on shopping performance. These positive effects were seen for individuals across a wide range of ages and disability types, and for a wide variety of shopping skills. The strongest effect sizes were observed for technologies that provided visual supports rather than just auditory support. We provide an interpretation of the findings, implications of the results, and recommended areas for future research.

scholarly journals The effect of water immersion on vection in virtual reality

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Géraldine Fauville ◽  
Anna C. M. Queiroz ◽  
Erika S. Woolsey ◽  
Jonathan W. Kelly ◽  
Jeremy N. Bailenson
Keyword(s):  
Virtual Reality ◽  
Motion Sickness ◽  
Water Immersion ◽  
Sensory Information ◽  
Future Research ◽  
Visually Induced Motion Sickness ◽  
Wide Range ◽  
Induced Motion ◽  
Ground Condition ◽  
The Impact

AbstractResearch about vection (illusory self-motion) has investigated a wide range of sensory cues and employed various methods and equipment, including use of virtual reality (VR). However, there is currently no research in the field of vection on the impact of floating in water while experiencing VR. Aquatic immersion presents a new and interesting method to potentially enhance vection by reducing conflicting sensory information that is usually experienced when standing or sitting on a stable surface. This study compares vection, visually induced motion sickness, and presence among participants experiencing VR while standing on the ground or floating in water. Results show that vection was significantly enhanced for the participants in the Water condition, whose judgments of self-displacement were larger than those of participants in the Ground condition. No differences in visually induced motion sickness or presence were found between conditions. We discuss the implication of this new type of VR experience for the fields of VR and vection while also discussing future research questions that emerge from our findings.

scholarly journals Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e016948 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Iveta Simera ◽  
Kate Seers ◽  
Carole Mockford ◽  
...  
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Reporting Guidelines ◽  
Consensus Development ◽  
Face To Face ◽  
Three Phase ◽  
Health And Social Care ◽  
The Impact

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis

BMJ ◽  
2018 ◽  
pp. k4738 ◽  
Author(s):  
Joanna C Crocker ◽  
Ignacio Ricci-Cabello ◽  
Adwoa Parker ◽  
Jennifer A Hirst ◽  
Alan Chant ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Lived Experience ◽  
Odds Ratio ◽  
Public Involvement ◽  
Meta Analysis ◽  
Patient And Public Involvement ◽  
Retention Rates ◽  
The Impact

AbstractObjectiveTo investigate the impact of patient and public involvement (PPI) on rates of enrolment and retention in clinical trials and explore how this varies with the context and nature of PPI.DesignSystematic review and meta-analysis.Data sourcesTen electronic databases, including Medline, INVOLVE Evidence Library, and clinical trial registries.Eligibility criteriaExperimental and observational studies quantitatively evaluating the impact of a PPI intervention, compared with no intervention or non-PPI intervention(s), on participant enrolment and/or retention rates in a clinical trial or trials. PPI interventions could include additional non-PPI components inseparable from the PPI (for example, other stakeholder involvement).Data extraction and analysisTwo independent reviewers extracted data on enrolment and retention rates, as well as on the context and characteristics of PPI intervention, and assessed risk of bias. Random effects meta-analyses were used to determine the average effect of PPI interventions on enrolment and retention in clinical trials: main analysis including randomised studies only, secondary analysis adding non-randomised studies, and several exploratory subgroup and sensitivity analyses.Results26 studies were included in the review; 19 were eligible for enrolment meta-analysis and five for retention meta-analysis. Various PPI interventions were identified with different degrees of involvement, different numbers and types of people involved, and input at different stages of the trial process. On average, PPI interventions modestly but significantly increased the odds of participant enrolment in the main analysis (odds ratio 1.16, 95% confidence interval and prediction interval 1.01 to 1.34). Non-PPI components of interventions may have contributed to this effect. In exploratory subgroup analyses, the involvement of people with lived experience of the condition under study was significantly associated with improved enrolment (odds ratio 3.14v1.07; P=0.02). The findings for retention were inconclusive owing to the paucity of eligible studies (odds ratio 1.16, 95% confidence interval 0.33 to 4.14), for main analysis).ConclusionsThese findings add weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study. Further research is needed to assess which types of PPI work best in particular contexts, the cost effectiveness of PPI, the impact of PPI at earlier stages of trial design, and the impact of PPI interventions specifically targeting retention.Systematic review registrationPROSPERO CRD42016043808.

Impacts of International Baccalaureate programmes on teaching and learning: A review of the literature

2018 ◽  
Vol 17 (3) ◽  
pp. 240-261 ◽  
Author(s):  
Anisah Dickson ◽  
Laura B. Perry ◽  
Susan Ledger
Keyword(s):  
Teaching And Learning ◽  
International Baccalaureate ◽  
Thinking Skills ◽  
Critical Thinking Skills ◽  
Pedagogical Practices ◽  
Additional Stress ◽  
Future Research ◽  
Wide Range ◽  
Teachers And Students ◽  
The Impact

International Baccalaureate (IB) programmes are growing rapidly worldwide, driven in part by their global reputation and concept-driven, inquiry-based approach to teaching and learning. This thematic review of a range of literature sources examines the impact of IB programmes on teaching and learning, highlighting trends, challenges, and benefits. Findings of the review revealed that most of the studies, both qualitative and quantitative, examined stakeholders’ perspectives or self-reported experiences of IB programmes; a very small number used research designs that control for confounding factors or allow causal inferences to be drawn. A wide range of stakeholders report that IB programmes develop research and critical thinking skills, intercultural appreciation and global awareness, as well as cultivate collaborative working cultures and creative pedagogical practices among teachers. Challenges include extra demands on teachers for lesson planning and assessment, additional stress for teachers and students, and competing demands and expectations with national requirements. Recommendations are provided which may guide future research endeavours.

scholarly journals Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review (Preprint)

2021 ◽  
Author(s):  
Ursula Ellis ◽  
Vanessa Kitchin ◽  
Mathew Vis-Dunbar
Keyword(s):  
Public Involvement ◽  
Geographic Location ◽  
Patient And Public Involvement ◽  
Advisory Council ◽  
Rapid Review ◽  
Medline Search ◽  
Ovid Medline ◽  
Cochrane Database ◽  
Wide Range ◽  
Scoping Reviews

BACKGROUND Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. OBJECTIVE This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. METHODS We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. RESULTS We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). CONCLUSIONS Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

scholarly journals Corporate social responsibility in the time of COVID-19 pandemic: An exploratory study of developing country corporates

2021 ◽  
Vol 5 (5) ◽  
pp. 73-80
Author(s):  
Poojaa Gokarna ◽  
Bala Krishnamoorthy
Keyword(s):  
Corporate Social Responsibility ◽  
Social Responsibility ◽  
Developing Country ◽  
Social Life ◽  
Central Government ◽  
Future Research ◽  
Exploratory Research ◽  
Csr Strategies ◽  
Corporate Social ◽  
The Impact

COVID-19 pandemic has long-lasting consequences on the health, economic and social life of a country (He & Harris, 2020). In a developing country like India, the socio-economic disruption has led to collaborative action between the central government and state government machinery together with the development sector to curb the impact caused by the virus. Academia substantiates the symbiotic relationship existing between the business and the society (McGuire, 1963; Carroll & Shabana, 2010). The corporates are contributing towards alleviating the pandemic situation through their corporate social responsibility (CSR) activities (Mahmud, Ding, & Hasan, 2021). This article provides insights into the CSR strategies adopted by corporates in India during the COVID-19 pandemic through exploratory research. The study is based on semi-structured interviews of 27 CSR managers involved in strategizing and implementation of CSR activities in their respective organizations. The results outline the commitment shown by corporates towards alleviating the consequence of the virus by multiple CSR strategies. Thus, this research furthers the understanding of CSR and forms a base for future research on COVID-19 and CSR

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