Global Online Survey Research Articles

The COVID-19 Pandemic Identifies Significant Global Inequities in Hemodialysis Care in Low and Lower-Middle Income Countries—An ISN/DOPPS Survey

IntroductionIt is unknown how the COVID-19 pandemic has affected the care of vulnerable chronic hemodialysis (HD) patients across regions, particularly in low and lower-middle income countries (LLMICs). We aimed to identify global inequities in HD care delivery during the COVID-19 pandemic.MethodsThe ISN and the Dialysis Outcomes and Practice Patterns Study (DOPPS) conducted a global online survey of HD units between March and November, 2020, to ascertain practice patterns and access to resources relevant to HD care during the COVID-19 pandemic. Responses were categorized according to World Bank income classification for comparisons.ResultsSurveys were returned from 412 facilities in 78 countries: 15 (4%) in low-income countries (LICs), 111 (27%) in lower-middle income countries (LMICs), 145 (35%) in upper-middle income countries (UMICs), and 141 (34%) in high-income countries (HICs). Respondents reported that diagnostic tests for SARS-CoV-2 were unavailable or of limited availability in LICs (72%) and LMICs (68%) as compared with UMICs (33%) and HICs (20%). The number of patients who missed HD treatments was reported to have increased during the COVID-19 pandemic in LICs (64%) and LMICs (67%) as compared with UMICs (31%) and HICs (6%). Limited access to HD, intensive care unit (ICU) care, and mechanical ventilation among hospitalized patients on chronic dialysis with COVID-19 were also reportedly higher in LICs and LMICs as compared with UMICs and HICs. Staff in LLMICs reported less routine testing for SARS-CoV-2 when asymptomatic as compared with UMICs and HICs—14% in LICs and 11% in LMICs, compared with 26% and 28% in UMICs and HICs, respectively. Severe shortages of personal protective equipment (PPE) were reported by the respondents from LICs and LMICs compared with UMICs and HICs, especially with respect to the use of the N95 particulate-air respirator masks.ConclusionStriking global inequities were identified in the care of chronic HD patients during the pandemic. Urgent action is required to address these inequities which disproportionately affect LLMIC settings thereby exacerbating pre-existing vulnerabilities that may contribute to poorer outcomes.

Current controversies in TNM for the radiological staging of rectal cancer and how to deal with them: results of a global online survey and multidisciplinary expert consensus

ObjectivesTo identify the main problem areas in the applicability of the current TNM staging system (8th ed.) for the radiological staging and reporting of rectal cancer and provide practice recommendations on how to handle them.MethodsA global case-based online survey was conducted including 41 image-based rectal cancer cases focusing on various items included in the TNM system. Cases reaching < 80% agreement among survey respondents were identified as problem areas and discussed among an international expert panel, including 5 radiologists, 6 colorectal surgeons, 4 radiation oncologists, and 3 pathologists.ResultsThree hundred twenty-one respondents (from 32 countries) completed the survey. Sixteen problem areas were identified, related to cT staging in low-rectal cancers, definitions for cT4b and cM1a disease, definitions for mesorectal fascia (MRF) involvement, evaluation of lymph nodes versus tumor deposits, and staging of lateral lymph nodes. The expert panel recommended strategies on how to handle these, including advice on cT-stage categorization in case of involvement of different layers of the anal canal, specifications on which structures to include in the definition of cT4b disease, how to define MRF involvement by the primary tumor and other tumor-bearing structures, how to differentiate and report lymph nodes and tumor deposits on MRI, and how to anatomically localize and stage lateral lymph nodes.ConclusionsThe recommendations derived from this global survey and expert panel discussion may serve as a practice guide and support tool for radiologists (and other clinicians) involved in the staging of rectal cancer and may contribute to improved consistency in radiological staging and reporting.Key Points• Via a case-based online survey (incl. 321 respondents from 32 countries), we identified 16 problem areas related to the applicability of the TNM staging system for the radiological staging and reporting of rectal cancer.• A multidisciplinary panel of experts recommended strategies on how to handle these problem areas, including advice on cT-stage categorization in case of involvement of different layers of the anal canal, specifications on which structures to include in the definition of cT4b disease, how to define mesorectal fascia involvement by the primary tumor and other tumor-bearing structures, how to differentiate and report lymph nodes and tumor deposits on MRI, and how to anatomically localize and stage lateral lymph nodes.• These recommendations may serve as a practice guide and support tool for radiologists (and other clinicians) involved in the staging of rectal cancer and may contribute to improved consistency in radiological staging and reporting.

A global community-sourced assessment of the state of conservation technology.

Conservation technology holds the potential to vastly increase conservationists’ ability to understand and address critical environmental challenges, but systemic constraints appear to hamper its development and adoption. Understanding of these constraints and opportunities for advancement remains limited. We conducted a global online survey of 248 conservation technology users and developers to identify perceptions of existing tools’ current performance and potential impact, user and developer constraints, and key opportunities for growth. We also conducted focus groups with 45 leading experts to triangulate findings. The technologies with the highest perceived potential were machine learning and computer vision, eDNA and genomics, and networked sensors. A total of 95%, 94%, and 92% respondents, respectively, rated them as very helpful or game changers. The most pressing challenges affecting the field as a whole were competition for limited funding, duplication of efforts, and inadequate capacity building. A total of 76%, 67%, and 55% respondents, respectively, identified these as primary concerns. The key opportunities for growth identified in focus groups were increasing collaboration and information sharing, improving the interoperability of tools, and enhancing capacity for data analyses at scale. Some constraints appeared to disproportionately affect marginalized groups. Respondents in countries with developing economies were more likely to report being constrained by upfront costs, maintenance costs, and development funding (p = 0.048, odds ratio [OR] = 2.78; p = 0.005, OR = 4.23; p = 0.024, OR = 4.26), and female respondents were more likely to report being constrained by development funding and perceived technical skills (p = 0.027, OR = 3.98; p = 0.048, OR = 2.33). To our knowledge, this is the first attempt to formally capture the perspectives and needs of the global conservation technology community, providing foundational data that can serve as a benchmark to measure progress. We see tremendous potential for this community to further the vision they define, in which collaboration trumps competition; solutions are open, accessible, and interoperable; and user‐friendly processing tools empower the rapid translation of data into conservation action. Article impact statement: Addressing financing, coordination, and capacity‐building constraints is critical to the development and adoption of conservation technology.

Measuring the Value of Public Relations: An International Investigation of how Communication Practitioners View the Challenge and Suggest Solutions

This research is motivated to advance our understanding of measurement challenges in communication practice and coping strategies from a global perspective. To do so, we relied on data from a global online survey of communication practitioners in more than 20 countries, which result in five country clusters for final analysis and comparisons. Communication practitioners across investigated country clusters shared different strategies used to cope with measurement challenges. Our results also confirmed that certain leadership qualities (i.e., strategic decision-making, possessing communication knowledge) are particularly important in managing measurement challenges. Our findings provide solutions, leadership skills, and prioritization to improve the measurement of communication effectiveness. Keywords: communication, public relations, measurement, coping strategies, global Survey

Does Place Matter When Understanding Loneliness and Social Isolation?

Gerontology in higher education is experiencing an exciting inflection point rising from the COVID pandemic pushing us to adapt our teaching modalities. Many educators have developed innovative learning experiences making use of creativity, virtual reality, online discussion boards, virtual tours, Jam Boards, videos, and breakout rooms. This symposium will bring together gerontologists and educators to discuss their educational innovations. Dr. Saunders will discuss the use of virtual reality in a Geriatrics clerkship experience to enhance knowledge, empathy, and attitudes towards older adults. Dr. Hanna and Ms. Kim will present the use of a virtual avatar to explore aging identity. Professor Barsness will discuss the participation of older adults from the community as subject matter experts. Ms. Redlich will share her virtual internship experience of exploring the intellectual and social benefits of adult study abroad. Although the pandemic was challenging to gerontological education, substantial transformations have been accomplished. The innovations described in this session broadened engagement of students with older adults to identify their strengths and challenges to flourish in the "New Normal."

A cross-cultural analysis of the motivation factors and profitability of online wine tastings during Covid-19 pandemic

PurposeThe pioneers of online wine tastings have set a new standard and introduced an innovative tool that combines various goals: contacting existing and recruiting new customers, entertaining participants and boosting sales. Within the framework of the study, the authors addressed questions such as the reasons for offering online wine tasting, profitability and the basic characteristics and future perspectives of this new interactive online tool.Design/methodology/approachA mixed-methods research was conducted using a sequential exploratory design to analyse online wine tastings during Covid-19 pandemic. First, 40 in-depth interviews in Germany were conducted and, based on these results, a global online survey was undertaken with 1,423 wineries from more than 40 countries.FindingsThe survey results clearly show the effect of Covid-19 on the growing tendency to employ online wine tastings. This tool is about more than just providing entertainment for wine lovers in that it also has a tangible business aspect.Practical implicationsBased on these results, the authors assume that online wine tastings will continue to be offered after the Covid-19 crisis.Originality/valueThis paper offers a situation analysis of the first 10 months of the Covid-19 pandemic in the field of online wine tastings worldwide. The authors conducted a quantitative online survey that built on a qualitative pre-study. Given the fact that no academic paper has been published on the topic, this paper provides first insights on a global scale.

Practices and views of wheelchair service providers regarding wheelchair-skills training for clients and their caregivers: a global online survey

Purpose To determine the extent to which wheelchair service providers conduct wheelchair-skills training, the nature of training, and the providers’ perceptions on training. Materials and methods Anonymous global online survey consisting of 29 questions administered via the REDCap electronic data-capture tool to English-speaking wheelchair service providers. Results We received 309 responses from wheelchair service providers in 35 countries. Of the respondents who responded to the question “…do you typically provide wheelchair-skills training…?” 227 (81.6%) reported “yes, always” or “yes, usually” for clients and 213 (81.9%) for caregivers. The median duration of training sessions for clients and caregivers was 45 and 30 min; the median number of sessions was 2 for both. Regarding the importance of training, 251 (94.4%) answered “very important” for clients and 201 (78.5%) for caregivers. For clients and caregivers, 182 (68.4%) and 191 (74.3%) of respondents considered themselves adequately prepared for the trainer role. A variety of barriers and facilitators to training were identified. Conclusions Most wheelchair service providers report that they provide wheelchair-skills training for clients and their caregivers, most consider such training to be important and most consider themselves adequately prepared for the training role. However, the amount of training is generally minimal. Further efforts are needed to address the identified barriers to training. IMPLICATIONS FOR REHABILITATION Most wheelchair-service providers report that they provide wheelchair-skills training. Most consider such training to be important. Most consider themselves adequately prepared. However, the extent of training is generally minimal. These findings have implications for clinicians, educators, and policymakers.

Exploring the Quality of Communication Between Patients with Psoriatic Arthritis and Physicians: Results of a Global Online Survey

IntroductionEffective communication between patients with psoriatic arthritis (PsA) and their physicians is important for optimizing treatment outcomes. We assessed the quality of patient–physician communication in terms of awareness and impact of PsA symptoms, their levels of satisfaction, and their perceptions of communications.MethodsA global online survey was conducted by The Harris Poll in adult patients with PsA and physicians managing patients with PsA in eight countries. Participating physicians were either rheumatologists or dermatologists seeing ≥ 10 and ≥ 5 patients with PsA per month, respectively. Patient and physician groups were unmatched. Patient–physician communication was assessed with 35–60 questions regarding discussion topics during consultations, levels of satisfaction with communication, and specific communication issues.ResultsA total of 1286 patients with PsA (983 and 303 whose primary treating physician was a rheumatologist or dermatologist, respectively) and 1553 physicians (795 rheumatologists and 758 dermatologists) completed the survey. Regardless of whether they were primarily treated by a rheumatologist or dermatologist, most patients reported a social (84% and 81%, respectively) or work (81% and 80%, respectively) impact of PsA, and a major/moderate negative impact on their physical activity levels (79% and 74%, respectively) or emotional/mental wellbeing (69% and 68%, respectively). Physician responses were generally consistent with this; however, physicians often appeared to under-recognize the extent to which PsA affects patients. Most (≥ 85%) patients and physicians were very/somewhat satisfied with their patient–physician communication, and most (≥ 86%) patients were comfortable raising their concerns/fears with their physician. However, > 40% of patients were identified as being at risk of suboptimal communication. These patients were significantly less likely to report their PsA symptoms even when asked, were less comfortable discussing the impacts of PsA with their physician, and were more likely to experience major/moderate impacts of PsA on their health-related quality of life (HRQoL).ConclusionsPhysicians often underestimate the impacts of PsA, compared with patients, and some patients may be at risk of suboptimal communication with their attending physician, which may worsen the HRQoL impacts of PsA. These findings highlight a need for ways to improve communication between patients with PsA and their healthcare providers.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40744-021-00367-z.

The impact of COVID-19 on the provision of respectful maternity care: Findings from a global survey of health workers

BackgroundSignificant adjustments to maternity care in response to the COVID-19 pandemic and the direct impacts of COVID-19 can compromise the quality of maternal and newborn care. AimTo explore how the COVID-19 pandemic negatively affected frontline health workers’ ability to provide respectful maternity care globally. MethodsWe conducted a global online survey of health workers to assess the provision of maternal and newborn healthcare during the COVID-19 pandemic. We collected qualitative data between July and December 2020 among a subset of respondents and conducted a qualitative content analysis to explore open-ended responses. FindingsHealth workers (n = 1127) from 71 countries participated; and 120 participants from 33 countries provided qualitative data. The COVID-19 pandemic negatively affected the provision of respectful maternity care in multiple ways. Six central themes were identified: less family involvement, reduced emotional and physical support for women, compromised standards of care, increased exposure to medically unjustified caesarean section, and staff overwhelmed by rapidly changing guidelines and enhanced infection prevention measures. Further, respectful care provided to women and newborns with suspected or confirmed COVID-19 infection was severely affected due to health workers’ fear of getting infected and measures taken to minimise COVID-19 transmission. DiscussionMultidimensional and contextually-adapted actions are urgently needed to mitigate the impacts of the COVID-19 pandemic on the provision and continued promotion of respectful maternity care globally in the long-term. ConclusionsThe measures taken during the COVID-19 pandemic had the capacity to disrupt the provision of respectful maternity care and therefore the quality of maternity care.

Cochlear implant user perceptions of magnetic resonance imaging

Objectives To characterise opinions about needing to undergo MRI within the population of current cochlear implant (CI) users. Background Magnetic resonance imaging (MRI) of CI users is often associated with severe discomfort and magnet displacement. Methods A global online survey of 310 CI users was conducted between 22nd July and 13th September 2020. Results Only 55% of respondents had been told whether their model of CI could undergo MRI. 31% of respondents considered MRI when deciding whether to receive a CI, and 28% when deciding which CI model to have. 64% reported concerns related to their CI if needing MRI compared to 29% reporting concerns unrelated to their CI. Willingness to undergo MRI reduced when considering magnet removal, splinting, bandaging, local anaesthesia, lasting discomfort, an inability to use their CI, or a reduction in image quality because of their CI. The single most influential factor was the possibility of damaging their CI (63%). 59% of respondents would consider minor surgery to upgrade their retaining magnet to one of a rotating design. Discussion These findings highlight the heterogeneity of CI users’ opinions about MRI. Conclusion We suggest several opportunities for improving the dissemination of current and accurate MRI-related information for CI users.

Relationships between paternal attitudes, paternal involvement, and infant-feeding outcomes: Mixed-methods findings from a global on-line survey of English-speaking fathers.

The breastfeeding intention–behaviour gap remains wide in developed countries. Current studies have focused on maternal attitudes and behaviours concerning infant feeding in order to explore barriers to breastfeeding continuation. There has been limited consideration of the impact of paternal attitudes and behaviours, despite contemporary parenthood evolving and evidence indicating that there are greater levels of paternal involvement in routine childcare tasks. This mixed‐methods study used a triangulation design to examine the associations between paternal attitudes towards parenthood and infant‐feeding methods, levels of paternal involvement, infant‐feeding outcomes, and father–infant relationships. Fathers of infants <52 weeks completed an online survey providing quantitative data (N = 212) and qualitative data (N = 208). For the quantitative data, fathers completed validated measures about their attitude towards parenthood and infant feeding, levels of paternal involvement, and infant‐feeding history. For the qualitative data, questions explored influences on paternal attitudes towards infant feeding and the father–infant relationship. After controlling for covariates, regression analyses found egalitarian attitudes towards parenthood were positively associated with both attitudes towards breastfeeding and levels of paternal involvement. Positive paternal attitudes towards breastfeeding were significantly associated with increased likelihood of breastfeeding. A thematic framework analysis indicated fathers' attitudes towards infant feeding were largely influenced by their families and partners or healthcare professionals. Polarised views were expressed about the impact infant‐feeding methods had on the father–infant relationship, although fathers were united in their desire to bond with their infant. Addressing paternal attitudes and the importance of father–infant involvement in domains other than feeding maybe beneficial in supporting breastfeeding and the father–infant relationship.

Patient Engagement Initiatives in Clinical Trials: Recent Trends and Implications

BackgroundAs clinical trial protocol designs become more complex and eligible patient populations narrow, it is becoming increasingly difficult to recruit participants and retain them for the duration of the trial. This study surveyed clinical trial participants to learn about the prevalence and impact of new technologies and other supportive solutions designed to improve patient engagement and retention. Patient perceptions of these convenience-enhancing solutions and how they have changed since our last study in 2017 were examined.MethodsBased on 12,451 responses to a global online survey collected in 2019, we conducted an analysis of respondents who used convenience-enhancing solutions during their participation in a clinical trial.ResultsWe found that the prevalence of convenience-enhancing solutions is increasing and that their use correlates with high ratings for clinical trial satisfaction, as well as with high ratings for care and attention received during the trial.ConclusionsA wide range of strategies and tactics are needed to reduce barriers to participation and improve retention. The use of convenience-enhancing solutions can help reduce these barriers. The solutions are also particularly popular among under-represented populations, revealing further potential opportunities to increase patient engagement specifically among these groups.

Global Gender Differences in Wikipedia Readership

Wikipedia represents the largest and most popular source of encyclopedic knowledge in the world, aiming to provide equal access to information worldwide. From a global online survey of 65,031 readers of Wikipedia and their corresponding reading logs, we present first evidence of gender differences in Wikipedia readership and how they manifest in records of user behavior. More specifically we report that (1) women are underrepresented among readers of Wikipedia, (2) women view fewer pages per reading session than men do, (3) men and women visit Wikipedia for similar reasons, and (4) men and women exhibit specific topical preferences. Our findings lay the foundation for identifying pathways toward knowledge equity in the usage of online encyclopedic knowledge.

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

ObjectiveThis study aimed to measure the impact of COVID-19 on the quality of life (QoL) of survivors and their partners and family members.Design and settingA prospective cross-sectional global online survey...

When learning how to lead, an exploratory look at role models

PurposeThe purpose of this study is to identify who people indicate are their role models for learning how to lead and explore how demographic characteristics may affect these choices.Design/methodology/approachA global online survey, involving over 34,000 respondents, indicated, from a list of 14 possibilities, the role model category from whom they learned to lead. Respondents indicated their age, gender, ethnicity, nationality, educational level, hierarchical level and job function. Chi-square analysis was used to identify how these factors may have affected the choice of role models distribution.FindingsFamily member (parents, siblings and other family outside of the immediate family) was found to be the most important role model category when it came to learning how to lead. Ranked second was immediate supervisor/manager. The rank order in terms of frequency of role model choices was not substantially different across demographic characteristics, though there were statistically significant differences regarding the relative importance of the various role model categories by demographics.Research limitations/implicationsThe results offer plentiful opportunities for future scholars to delve more into both the nature and actions of role models, in keeping with social learning theory. Future scholars can investigate the nature of people's relationships with leadership role models, especially conceptualizing why and how various demographic factors affect how people learn to lead.Practical implicationsUnderstanding who people have as role models for what they have learned about leadership can provide important insights for those responsible for leadership development. Similarly, individuals who are in role model “positions” (e.g. parents, teachers, managers) can be more aware of how their behaviors have implications for how their audience learns what effective leadership looks like in action.Originality/valueThis study addressed a relatively unexplored area in the leadership literature, namely within what category of role model have people found to be most important in helping them learn to lead. The large and diverse sample, across a multitude of demographic characteristics, strengthens the generalizability of the findings.

Effect of COVID-19 pandemic on global Bariatric surgery PRActiceS – The COBRAS study

IntroductionThere is a paucity of data in scientific literature on the impact of Coronavirus Disease 2019 (COVID-19) pandemic on bariatric surgery. The aim of this study was to evaluate the impact of COVID-19 pandemic on Bariatric Surgery globally. MethodsWe conducted a global online survey of bariatric surgeons between 16/04/20 – 15/05/20. The survey was endorsed by five national bariatric surgery societies and circulated amongst their memberships. Authors also shared the link through their personal networks, email groups, and social media. Results703 respondents from 77 countries completed the survey. Respondents reported a drop in elective bariatric activity from a median (IQR) of 130 (60–250) procedures in 2019 to a median of 0 (0–2) between16/03/2020 and 15/04/2020 during the pandemic. The corresponding figures for emergency activity were 5 (2–10) and 0 (0–1) respectively. 441 (63%) respondents did not perform any bariatric procedures during this time period. Surgeons reported outcomes of 61 elective bariatric surgical procedures during the pandemic with 13 (21%) needing ventilation and 2 (3.3%) deaths. Of the 13 emergency bariatric procedures reported, 5 (38%) needed ventilation and 4 (31%) died. 90 (13%) surgeons reported having had to perform a bariatric surgical or endoscopic procedure without adequate Personal Protective Equipment. ConclusionsCOVID-19 pandemic led to a remarkable decline in global elective and emergency bariatric surgery activity at its beginning. Both elective and emergency procedures performed at this stage of the pandemic had considerable morbidity and mortality.

Stakeholders’ recommendations for revising Good Clinical Practice

The International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) is revising ICH E6 Good Clinical Practice (GCP). The Clinical Trials Transformation Initiative (CTTI) initiated a project to identify and provide ICH with stakeholders’ priority areas and suggestions for revising ICH E6 GCP. We conducted a global online survey to identify areas of ICH E6 GCP that are and are not in need of revision. A total of 327 stakeholders completed the survey. Stakeholders represent many research roles and types of organizations, are employed in 39 countries, and conduct research in 153 countries. The ICH E6 GCP principles mentioned most often (range, 25%–29%) in need of revision were implementing systems that assure quality, providing medical care by qualified physicians/dentists, protecting confidentiality and privacy, obtaining informed consent, and documenting and storing information. The Investigator section (n = 244, 75%) and Sponsor section (n = 242, 74%) of ICH E6 GCP were identified as needing the most revision and the Investigator Brochure section (n = 166, 51%) as needing the least revision. The topic most frequently mentioned as needing revision is Monitoring (n = 146; 45%) in the Sponsor section. Although none of the principles or topics in ICH E6 GCP were identified as needing revision by the majority of stakeholders, a meaningful percentage of stakeholders identified areas that they believe need revision. These findings, which represent the views of a wide variety of stakeholders, may be useful to ICH for identifying where specifically to focus their revision efforts. CTTI provided the final report to ICH with the project findings for their consideration.

Compression treatment in acute symptomatic proximal deep venous thrombosis – Results of a worldwide survey

The aim of this study was to illustrate how compression is performed worldwide in proximal DVT and if compression management has changed recently. A global online survey, consisting of 36 questions, was used. The survey was solicited from membership lists of Union Internationale de Phlébologie (UIP) membership societies. For differences between the continents in comparison to Western Europe odds ratios and 95% Confidence Intervals (95%CI) where calculated. We received 626 answers from 41 countries. Compression is routinely used in proximal DVT in all regions (82.8%). 81.4% start compression immediately after diagnosis. In the acute phase of DVT reduction of pain and swelling (91.7%) and PTS prevention (66.2%) are the main reasons for compression. 33.2% recently changed their compression management with 43.5% starting compression earlier and 7.0% later. Compression is still used routinely in proximal DVT in addition to anticoagulation. The changes in international guidelines towards the non-routine use of compression in proximal DVT have not caused significant changes in DVT management.

COVID-19, Indigenous peoples, local communities and natural resource governance

We report on how the COVID-19 pandemic is affecting Indigenous peoples and local communities (IPLCs), especially those who govern, manage and conserve their lands and waters. We explore the themes of access and use of natural resources, solidarity, decision-making, the role of governments and IPLCs in managing COVID-19, and the uptake of traditional medicine. These themes are explored through a global online survey in English, Spanish and French. We collected and analysed 133 surveys from 40 countries, using SenseMaker®, a software that enables analysis of micronarratives based on how respondents classify their own stories. We explore the themes further through case studies from Benin, Fiji, France, Gabon, Guyana, Guatemala, India and Madagascar, highlighting challenges and opportunities in how IPLCs responded to COVID-19. Our study underscores the importance of selfempowerment and recognition of IPLC rights, which allows them to use traditional medicines, meet subsistence requirements during lockdowns, help community members and neighbours to sustain livelihoods, and to govern, defend and conserve their territories. We propose key actions to support IPLCs navigate future pandemics while protecting their lands and waters.

P39.07 Evaluating the Success of the First Global Lung Cancer Coalition Patient Experience Survey

The Global Lung Cancer Coalition (GLCC) is a partnership of 40 patient organisations across 29 nations, dedicated to improving outcomes for lung cancer patients. The GLCC wanted to understand the experiences of lung cancer patients in different countries, identifying common themes and differences. However, little comparative data on patient experience exists. The GLCC therefore set out to run a global online survey of patients using its members’ networks. This was the first time the GLCC had attempted such a survey. The GLCC convened a steering group with representatives from the UK, Ireland, Netherlands and USA, including patients, clinicians and advocates. The group devised 10 questions which were translated into multiple languages, checking terminology was applicable. In addition to demographic questions, the survey asked what treatment types people had received, and considered how people felt about their care, as well as how they describe themselves. The survey was distributed by GLCC members via supporter emails, newsletters and social media. One organisation distributed hard copies in hospitals. The survey was open throughout January 2020. The results were collated and analysed by the steering group. The GLCC produced a global report with findings for all participating countries. Each member received a bespoke briefing with information on how patients in their country answered the survey compared to global respondents, for use in national campaigning. The survey was distributed in 17 of the 40 countries where the GLCC has members. 907 patients responded. There was variation in the number of responses, ranging from 157 in the UK (most responses) to one in Turkey (least responses). More women than men responded (74% were women). Most patients (66%) had been diagnosed in the past three years. The number of responses indicates the willingness of patients to contribute their time and insights to a global endeavour. The responses showed considerable variation in patients’ experience of their care, including their level of involvement in decision-making and whether they felt treated with dignity and respect by their care team. These initial findings merit further exploration at a national level, to test whether they are representative of the wider lung cancer patient population’s experience (particularly for countries with fewer responses). For future research, the GLCC would consider: How to increase the number of countries participating and overall volume of responses How to achieve a balance of women and men (for example, using other distribution channels) How to reach more patients who have survived for longer Other topics such as where patients look for information and who they trust to provide it Supplementing the survey with qualitative interviews The first GLCC survey is proof of principle: it is feasible to undertake a multi-nation patient experience survey and patients are willing to participate. We are grateful to all patients who responded. The GLCC’s members are using the global and national findings to support their advocacy work and would consider a similar initiative in the future.