50 responses
40 responses
| Group work and online delivery has went well. |
| networking |
| Collaboration, access to other BOD experts and expertise |
| networking, learning new methodologies, new resoureces |
| Being a partner on the successful unCOVer project |
| ONLINE SEMINARS/WORKSHOPS |
| Networking |
| meetings, abstract submission, newsletter |
| Learning about BoD experiences from other countries; Meeting with various experts; opportunity to undertake own research while being supported |
| I think it has been well organized and inclusive, taking into account the needs of the members. |
| A single workshop |
| sharing experience |
| Web, information by email, first conference in Denmark, open to many other researchers and organizations, adaptation to covid situation |
| The chair has informed us well by sending updates of the Action regularly. |
| the training programs and webinars |
| networking on the same subjects |
|
| Learning more about all things burden of disease (including other areas). Getting to know experts in the field, the networking. The webinars and resources published. |
| networking, facilitating exchange of knowledge and experiences |
| sharing the standard protocol to evaluate GBD for Covid-19 |
| Meeting expert academicians, improving myself on GBD |
| Sharing knowledge |
| Operational approach to implement/initiate BoD studies, scientific collaborations without any cost, friendly behaviour to guide for BoD approaches |
| The individuals the network and their competences |
| The possibility of engagement in a network dedicated to BoD and also to acquire extenxive knowledge on this area (stsm, workshops,etc). |
| Very interesting publications |
| Management and communication are the best |
| The networking, the presentations… and the covid-19 protocol |
| Chance to collaborate with scientists from all over Europe, to interact and meet experts on the field |
| Webinars on very actual topiks |
|
| the possibility to start new collaborations |
| Updates on ongoing BoD activities in european countries |
| International interaction with top researchers and collateral, new activities |
| Networking with other countries and joint work to present some of the BD issues, but also methodological instructions how to conduct relevant BoD studies. Then, already published articles resulted from this COST that we can use to try applying to our data.. |
| The chance to learn about what others were working on and to set up collaborations |
| Connecting professionals involved in the action |
| Good communication |
| Great methodological discussions and boosted collaboration for scientific outcomes. |
| The Copenhagen meeting |
33 responses
| Maybe just simplification of what each member should be doing between meetings - sometimes I struggle to know where I fit. |
| As far as I can judge, continuous cooperation in the WGs has not really started or may have suffered due to the pandemic. |
| More information on knowledge translation tips, although appreciate this will come. |
| more interactive sessions, bringing methodological questions |
| Very hard to answer. The Action has been EXTREMELY well managed, but I have found the ongoing COVID situation and thus lack of contacts within the COST action have made it quite difficult to truely engage with other members, or put forward ideas. Moreover, when I have responded to group mails (e.g. a BoD literature review) regarding potential sources of information, or assistance I could provide, I received no response |
| TO WORK CLOSER WITH SOME GROUPS (E.G. BEING INVOLVED WITH SOME WORKS, ANALYSES) |
| More opportunities to do research as a network |
|
Up to now the collaboration with other COST action participants has not been established, because it is not very easy to understand who occupied with similiar diseases or have an access to administrative databases. The access to administrative databases even more important since they could provide data on many conditions, even if a person doesn’t work exactly with the concrete disease on my interest. Thus, the table with the Action expertise would be implemented with the column “access to administrative databases” with a specification (regional, state-level, etc) to easy match the search in case of grant and project opportunities. It would be useful to have a “requirements” feature that could be used to find a professional for joint work on article, project, etc. The idea could be demonstrated with the following example: one researcher would like to make an analysis of his/her data but has no biostatistician, thus s/he could post a “requirement” on the Action web-site and in the newsletter for searching a biostatistician for analysis, ith some specifications like cancer mortality on a dataset with 1 million persons and follow-up 10 years. Similarly, a biostatistician who is looking for new opportunities would post a “requirement” that s/he is proficient with survival (or economic, etc) analysis and looking for a project that match his/her interests. The outcome of abstracts submission is not very clear, since they were planned to be published in a supplementary issue, but no information about it is avilable. |
| Pursue the activities as planned within the COST ACTION and even after as an society |
| I really like working in groups at the meetings, perhaps it would be possible for the specific subgroups to meet regularly? |
| training, focus on methods |
| up-to-date topics for discussion |
| so far is good. maybe try to get a special issue in a journal, or a book, or something similar? |
| implementing education programs for the members would help me the most |
| joining research topics |
| Organize more webinars. |
| given the covid situation, implement country specific web pages in which to share experiences and contacts. |
| May be by providing a live forum for discussion, in case of need |
| By increasing the seminars/webinars, organizing summer schools |
| Creating smaller groups to facilitate the work of all members |
| Under Corona crisis, need more webinars/teaching sessions/lectures on various aspects of methodology and risk factors. |
| Nothing to suggest |
| This year has been very difficult but I think the major need are trainings, even as webinars. |
| Provide equal opportunities for participation in different projects to all action members (old and new) |
| I hope the situation with COVID pandemic will improve soon |
| Start producing some collaborative publications |
| Seminars/webinars on methodology |
| Help to finish the ongoing COVID-19 pandemic, so we can meet in person and return to some sort of normality |
| More concrete methodological support to our national studies and in the light of the upcoming WG meeting on COVID19 disease burden |
| Nothing can be improved; already a high level |
| The most important think is that situation with coronavirus improve and that we get opportunity to meet and discuss in real not virtual world |
| It would be important to set specific and clear milestones and deliverables |
| Easier and clearer communication with GBD; more methodological workshops. |
50 responses
50 responses
50 responses
18 responses
| methodological discussions |
| Continued sharing of country-specific experiences |
| comparative aspects, practical discussions |
| IN MY OPINION, THE PROJECT UNCOVER (WHERE DIFFERENT MEMBERS OF THE COST ACTIONS ARE INVOLVED) CAN REPRESENT AN INPUT TO SUPPRT COVID 19 DISEASE BURDEN ACTIVITIES |
| Organize a series of workshops for joint (all interested countries) calculation of COVID-19 BoD step by step according to the recently developed protocol. This could be a multi-country approach to testing the Protocol among COST ACTION partners. |
| Perhaps creating a group that would regularly meet and collaborate on this? |
| sharing the examples of covid burden studies and in-depth analysis for them would help |
| sharing data |
| Open line for support. Encourage collaboration and communication by email at different steps of the study. |
| found the last seminar quite interesting, and would implement the sharing of country experiences regarding calculation of covid burden |
| Considering our heavy involvement in COVID-19 monitoring and limited time and human resources, it would be difficult to achieve these goals at a short term. but, it would be interesting to perform such studies at national level, once it’s possible. |
| Encouraging everyone to take part in the process |
| Thanks for sharing the protocol for covid-19 country studies, it is very comprehensive. Maybe some guiding sessions on choices of various methodological approaches such as disease models, disability weights and uncertainity analysis, would be helpful. Especially, in-depth discussions are important with experts. |
| Access to groups that have already gone through the exercise |
| Publish a step by step procedure in calculations, commonly agreed and accepted, in order to have common and comparable results among different countries |
| Much is done in countries, would be nice to get an overview. In particular methodological issues re covid related deaths and YLL is challenging and needs discussion |
| Identify analyst |
| to change experience and good practices how to improve COVID-19 disease burden activities |
30 responses
29 responses
| late COVID |
| Knowledge translation related i.e. what does this tell us about the COVID-19 burden, issues against it being highly mitigated against etc. |
| mainly methodological, also sometime access to data, linking databases |
| Data and ethical approvals have been extremely slow |
| NOT READY TO ANSWER TO THIS QUESTION (I AM INTERESTED IN EVALUATING THE PANDEMIC FATIGUE, SPECIFICALLY) |
| Not getting all the required data |
| lack of funds |
| Data collection |
| Lack of time, lack of access to data |
| lack of data looks like the biggest obstacle and of course my lack of experience |
| Defining data requirements and requesting data through official routes. |
| many things happened during lockdowns. some effects are direct covid, some others are indirect, some are positive and some negative and they overlap. difficult to disentangle. less injuries? more anxiety? less pollution? less physical activity? increased bmi? smoke and alcohol? reduced access to services for non-covid needs? it seems for example that diagnoses for melanoma were done on larger size melanomas, due to the increased time to outpatient visits. |
| lack of time and ressources |
| Our group has only access to local (subregional) data |
| Lack of will to initiate the study, lack of a statistician to handel the data |
| none |
| Lack of data |
| Actually in my country there is luck of reliable data in every step of the calculattions |
| I’m from the Danish SSI - and working with Sara, so have benefited from Sara’s work. |
| Difficulty in accessing national data |
| Less experience in working with GBD |
| Access to data |
| Lack of national/regional data of 2020; Time commitments and conflicts with other urgent priorities |
| Lack of evidence on long term complications |
| COVID-19 is currently unpredictable. It is necessary to find a way to successfully limit it. |
| lack of possibility to meet |
| Data input and calculation |
| Data and their interpretation have political implications |
| Time |
30 responses
20 responses
| not my realm of study (only a PhD student) |
| Not sure |
| colleagues do calculate the burden due to covid19 |
| it is still in discussion |
| I have had another urgent activities in research and, mainly, in teaching. But I would like to quantify the effect in life expectancy and mortality, and, eventually, in burden of disease. |
| Due to other research tasks. |
| I am not working in the area of infectious diseases. |
| My work is mainly focused on NCD |
| no data available |
|
| I have no time right now, I have to give online-courses for my students at the moment until the end of this year. |
| Not involved in a research group dedicated to COVID-19 |
| Not my topic |
| Transparency of data in Serbia is on a very low level |
| We have not had time to do it yet |
| Lack of time |
| Have other projects |
| Done in the GBD system and various national bodies |
| probably not enough resources and capacities, but also because of organizational issues |
| Others in my country are doing this |
6 responses
| Supplying some of the specific tools needed and a clear guide of exactly how this would be carried out, would be helpful. |
| Learning a bit more, especially when data available is still not accurate. |
| sharing data and methodology |
| By sharing information on recommended methods (which is being done) so that the different studies would be somewhat comparable. |
| Don’t know |
| to propose methodology and required data |
46 responses
| How to improve collaboration between national efforts and IHME |
| Publicly available resources on 2019 reference life table use |
| priorities, projections |
| None |
| NOT SPECIFIC QUESTIONS |
| N/a |
| Robustness of disability weights for certain conditions |
| discussion about GBD in low-middle income countries |
| What are the top 3 priority diseases (risk factors) at global and regional based on GBD 2019 study estimates for the future? |
| No specific questions |
| attributable burden of disease |
| generally, health-related factor change during COVID-19 |
| Effect of smoking, alcohol and other behaviors and risk factors |
| No questions. |
| Where are the details of disability weights and severity distributions available? |
| how work around the missing data |
| Methods to assess the overlap of risk factors and comorbidities? |
| none |
| The disability weights are quite complicated for some diseases such as diabetes. How have these DWs been applied in GBD or how they should be applied in other studies to different types of data not including all the details described in connection to the DWs? For diseases with DWs for three or four severity levels and published severity distributions the case is somewhat less challenging. |
| challenges in considering impact of covid pandemic on GBD for the year 2020, given that most countries will not have data available to share, not even VR, before the closure of the cycle. |
| probably to talk about anti-covid vaccine efficacy |
| How to calculate BoD of Covid |
| Sharing data and code templates |
| As mentioned in the article “GBD 2019 includes subnational analyses for Italy, Nigeria, Pakistan, the Philippines, and Poland”, my question is how do you take into account the quality of data despite there is no reliable health information system existing, for example Pakistan and Nigeria? and how these estimates could reflect the real-time situation (extent of uncertainity)? |
| Main differences from previous rounds - both methods and results |
| methodology |
| How do they perform data integration |
| Calculation of Disability weight |
| CO-morbidity adjustment |
| Not yet |
| Lots of general questions - which I’m sure will be covered. |
| I woudl like to have elucidations on how overlap between different risk factors is managed when computing the attributable burden |
| Highlight differences in European data. Discuss the effect of COVID-19 |
| No questions |
| Expected changes in the future due to COVID-19 |
| Specific info on the risk factors |
| None |
| Mental disorders, in particular how YLL is counted, currently not adequate in GBD |
| What sort of data will be used to infer cause of death and impact on use of health services in GBD2020? |
| how to use properly the results of this study in order to inform health policy and how reliable are this data, considering that we have some articles comparing real and estimated data |
| Does the GBD method offer any advantages over other methods for COVID-19 disease burden calculation? |
| COVID-19 impact on chronic diseases. |
| . |
| Impact of COVID-19 on mortality |
| Data quality assessment of GBD. Next steps on adjusting disability weights for different sets of countries. |
| What are the main differences compared to the earlier GBD study |
25 responses
| PSYCHOLOGICAL ASPECTS |
| NCDs |
| Impaired kidney function, fasting plasma glucose |
| environmental and behavioral risk factors |
| Behavioral risk factors |
| nutrition and diet related |
| Smoking, alcohol |
| Behavioral |
| would the lockdowns quantify as a risk factor? |
| Tobacco, alcohol, diet, physical incativity |
| fasting plasma glucose, overweight and obesity |
| Smoking (and its definition in GBD), blood pressure, high cholesterol |
| not only the overlap on the concomitant occurrence, but also the chain: high BMI, high blood pressure, high LDL, high fasting plasma glucose, are metabolic risk factors, but are also the consequence of behavioural risk factors: malnutrition, dietary risks, alcohol use, low physical activity. how can we consider both? what measures have been taken not to consider these twice? have metabolic risks been “cleaned” by the effect on them of behavioural risks? |
| Diabetes, COVID-19 |
| Climate change and infections |
| Behavioural risk factors especially dietary; metabolic risk factors with focus on mediation. |
| Metabolic risk factors |
| Dietary risk factor, physical activity, smoking |
| Air pollution, suboptimal temperature |
| Safe water, air pollution |
| CVDs |
| Alcohol, physical activity, education |
| All sorts of smoking to start with |
| . |
| TBI as a risk factor to develop neurodegenerative diseases |
11 responses
| Sharing of developments, continued exchanges over any differences in methods impact. GBD need to have more honest conversations around where limitations of using country-specific, and sub-national, estimates lie. |
| If it is in the common interest, can our COST action create the conditions for piloting GBD research activities, model evaluation? |
| nothing so far |
| knowing how cost action members are feeding GBD estimations |
| Continue the excellent work |
| support the creation of a network of countries for which GBD subnational estimates are available (UK, Norway, Poland, Italy, Sweden), to stimulate other countries to follow. |
| Thank you for your efforts |
| More comparisons between GBD methods and BoD approaches |
| Sharing experience, technical support |
| Could it be the other way around? |
| Support assessment of Excess Deaths From COVID-19 and Other Causes |
50 responses
50 responses
44 responses
| lay language, highlighting key results, explanatory videos |
| By understanding the clear uses, and misuses of the data |
| engaging stakeholders, policy makers |
| Don’t currently know |
| USING A COMMON FRAMEWORK OF ANALYSIS (E.G. THE USE OF ICF) |
| Having a toolkit and a guide |
| more articles a policy briefs should be published for each country |
| Collaboration between countries |
| Need to be delivered at the right time and by the right people |
| Not sure |
| educational videos |
| to use evidence-based tools |
| Not sure. |
| Clear instructions |
| more webinars |
| By presenting it to national and EU decision makers in forums like the Assembly of Members from InfAct |
| passing trought scientific literature to newpapers |
| DN |
| don’t know |
| via improved communication |
| Organizing ad hoc workshops |
| With more interactions with policy makers to understand their needs on understanding BoD results |
| ? |
| Development of an harmonized approach for communication |
| Provide specific figures that can be used to better understand DALYs (eg the concept of DALY might be difficult to understand for policy makers) |
| By organizing a live MC/WG meeting as soon as possible |
| To have a clear structured guideline |
| I really do not know |
| Not sure |
| Feedback after being used |
| Meetings, conferences, internet resources |
| Use of a proper toolkit |
| Don’t know |
| On country level: How to translate findings to policy |
| Don’t understand this question |
| with tools or techniques to properly use and present results of the studies |
| Not sure |
| The process could be improved by using the already existing experience in different countries to not to repeat the same actions and mistakes. |
| . |
| developing of toolkit |
| Organizing meetings and training programs |
| Nothing to add. |
19 responses
| I think you are doing a good job |
| Collaboration with other participants, joint application for grants |
| for the moment no |
| Help in knowing exactly how to quantify COVID 19 specific disease burden |
| Calculation of prevalences of diseases which have sequelaes, e.g. diabetes. |
| nothing |
| diabetes morbidity and mortality |
| possibility of transforming training schools and short term scientific missions into activities that can be carried out during the pandemic? |
| Would like to know, if it is possible to focus as well on studies to evaluate anti-covid vaccine efficacy, in the frame of eu-Burden? |
| Methodology |
| Yes, for the BoD methodology and the interpretation of BoD results |
| Methodological approaches to model overlap between risk factors incl mediation |
| Burden of infectious diseases |
| Not yet |
| Help with administrative chores; website easier-friendly |
| how to organize and improve national data especially mortality to better serve to BD studies and what alternative sources can be used |
| None |
| . |
| Help to assess Excess Deaths From COVID-19 and Other Causes in my country |
7 responses
| nothing |
| nothing else. |
| Please see above answer, many thanks |
| Not yet |
| Perhaps this survey was too long. But hope it helps. I am ready to start working |
| None |
| . |