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TB Conferences: We Must Do Better

By Madhukar Pai | 29 Oct, 2018

Hi All

Please see my blog post:

https://naturemicrobiologycommunity.nature.com/users/20892-madhukar-pai/posts...

Look forward to comments/feedback.

Best

Madhu

Keywords:
Conferences

Replies

 

Jaya Tyagi Replied at 11:44 AM, 29 Oct 2018

Hi Madhu,
that is a very relevant blog. Thanks.

Dr. Jaya Sivaswami Tyagi, FNA, FASc, FNASc
Professor & Head, Department of Biotechnology, AIIMS, New Delhi
*and*
Honorary Visiting Professor
Centre for Biodesign and Diagnostics, THSTI, Faridabad, Haryana

Romain Prieur Replied at 11:44 AM, 29 Oct 2018

I could not agree more Madhu. Looking forward to next years Union conference in Hyderabad.
This year's Union certainly did bring in more the patient perspective but we need to continue the momentum there.

Believe Dhliwayo Replied at 11:53 AM, 29 Oct 2018

Nailed to the point

David Dolinger Replied at 12:33 PM, 29 Oct 2018

Dear Madhu:
Fully agree, but there needs to be multiple opportunities for joint projects/programmes between the local community and the attendees. We should be willing to participate and experience what is happening in the local community. We are in it for the people (I hope). But please lets force the issue of getting rid of the words such as patient, those of us who have had TB are people and individuals and should be respected as individuals and not treated as fish in a bucket. Also the use of the word survivor, we didn't survive. In some cases we have won but we all have the onus of relapse hanging over our heads and hopefully we will beat TB again when or if it assaults us again. We have just finished a Union conference focused on Human Rights, Human Dignity, individual focused care pathways but listening to the talks I don't think that all people understand what an individual goes through once they are diagnosed. In all of this we must place the individual and their support system in front, put ourselves in their shoes, walk their path. Basically it is our approach which has caused most of the issues and harm to those infected and their support systems. IF and WHEN we change our discussions concerning the disease and those affected by the disease then can we say that we are having impact, have put the individual front and center in out discussions and approach. It is us that have caused the stigma based upon our approach, "We have met the enemy and he is us". Let us give additional voice to the voiceless., they won't be silenced but the decibels need to be raised.

Deliana Garcia Replied at 3:27 PM, 29 Oct 2018

Dr. Pai:
Thank you so much for this blog. As with your previous statements about our approach to TB, you have done a fabulous job of outline essentials for conference design and participation.

Sonam Solanki Replied at 9:02 AM, 30 Oct 2018

Very well written. Looking forward to the Union meeting in India 2019.

Abdul ghafoor Replied at 9:03 AM, 30 Oct 2018

Dear Madhu
You have raised important points. High Burden Countries with scarce
resources need to participate in the scientific conference aiming to
discuss eliminating TB.With out their appropriate representation, the job
is half done.
TB survivors can be very good advocates for raising domestic funding and
also can playing a vital role in fighting stigma.But how can we make it
happen is a challenge.

Kavitha Saravu Replied at 11:23 AM, 30 Oct 2018

Hi Madhu,

The points that you raised are so relevant.

I have experienced this personally as I think many times the trouble of visa processing and even the distance we have to travel to acquire a visa!!

Participation in high numbers, and the active involvement of stake holders from high burden countries will be immensely helpful while we have ambitious targets ahead.

Thanks for highlighting these points! Can't agree with you more..

Prof.Dr.Matiur Rahman Replied at 1:28 PM, 30 Oct 2018

There is no two opinion about ensuring participation from high burden countries,but in this era of Patient centered care we will have to ensure the patient participation.The participation of those involved in the management of TB is equally important but the cost of travel and registration fees is an issue and virtual attendance may be considered on a very nominal fees.

Victoria Dalay Replied at 7:52 PM, 30 Oct 2018

Very well said! Hope it will be done also in the Philippines soon!

Vicky

Stacie Stender Replied at 5:22 AM, 31 Oct 2018

Madhu,

As the past Chair of the Coordinating Committee for Scientific Activities (CCSA) of the Union, 'overseeing' the three previous conferences - Cape Town, Liverpool and Guadalajara - I must comment. I totally agree with the points made, and these are things many of us have tried to influence over more than a decade. There are a multitude of factors that influence decisions that are not always obvious or easy:

1) The CCSA has been acutely aware of the need for gender, regional, ethnic and technical focus balance in the conference and makes CONCERTED efforts to ensure appropriate representation. Plenary sessions are invited speakers. Scientific oral and poster sessions are based on submissions for peer review. The CCSA invited you, a male who calls Canada home, to present in one of 3 plenary sessions.
2) The Union is an INGO that has global representation on the Board through Regional and Scientific Sections, as well as individual members. It is not only focused on TB, although 70-80% of members report TB as their Section affiliation. Adult and Child Lung Health, HIV and Tobacco Control are the other 3 Sections. I can't speak properly to operations, but financial gain (or at least not loss) is a consideration for the NGO.
3) Setting the agenda for The Union conference requires involvement by the NGO/membership organisation. High burden countries have been and continue to be represented on the CCSA.
4) Routing, travel costs, accommodation availability & costs, country interest in hosting, visa exclusions (and processes) by host countries, host-country/region/city contributions, human rights record, among other things are considered. The Union staff put together a recommendation and the Board votes on it - there could be more transparency in the process, without a doubt. Fees have been reduced for LMIC for many years.
5) Even in the best of circumstances, conferences are largely for the 'elite', whether academic or programmatic (NGOs) and should not be considered the primary place for sharing of information, particularly in our digital age. Front line healthcare providers are largely excluded - I can give numerous examples, beginning with inadequate representation of nurses and community health workers. After years of advocacy, at least now there is a community space at the conference, the inaugural being Imbizo in Cape Town in 2015. I am proud that with organisational and financial support from my organisation - Jhpiego - Juliet Nalumu, a Ugandan woman living with HIV who had TB during pregnancy, shared her experience in the opening ceremony at that conference.

Fortunately Keren Middlekoop carries forward the principles of the CCSA to try to ensure the conference is scientifically sound with TRUE peer-review and representative of member priorities. Change doesn't happen by chance - I urge anyone who truly wants to transform the way the Union conference is organised to become involved in the process. It's easy to post criticisms, harder to actually make change 'on the ground'.

Regards
Stacie

Marlon L. Bayot Replied at 7:00 AM, 31 Oct 2018

Prof. Madhu,

Thank you for sharing your blog about some steps to improve the quality of TB conferences. Generally, I agree with your proposed actions in the future. Below are my comments for your consideration:

1. Organizing meetings in high burden countries is like optimizing patient interaction. Policymakers and international experts can have a real view of the TB situation if they work closely with the site of the problem. The closer we are to the TB patients, the more focused we become and the more curiosity we have which can lead us to the very details of the issue. During the conference, the selected high burden country can be highlighted to the participants while relating its existing context to the agenda. Through this, there can be an effective sharing of best practices among all participants, both from NTP and private institutions, etc.

2. Reducing fees for LMICs participants can be helpful. Not only that more people can attend the conference, but also there will be a strengthened collaboration. Currently, I am not aware of the list of LMICs are completely synonymous with the list of HBCs with regards to TB. If possible, I would also suggest reducing fees primarily for these high burden countries (HBCs), as their presence can be really significant in such conferences.

3. TB survivors’ presence at the conference indirectly shows the impact of efforts made by all stakeholders and decision-makers. It is through these people that we are able to learn if we are doing the right thing. While you have addressed in your blog how we can help them participate or register in the event, I would like to add that their presence can also be valuable if they can actively join sessions that would fit them in the conference. For example, a TB survivor claims that his previous experience from a certain laboratory has really helped him achieve good quality specimen during collection and prior to testing [which contributes to quality test results], and, another survivor may have been effectively motivated by his treatment partner so he would not fail in completing his drugs despite challenges, or one who has really felt the support of his community in the fight against TB. Knowing their stories and matching it to the specific agenda (e.g. TB laboratory/diagnosis/testing, treatment/case holding, community efforts, etc.) of all sessions, will make their attendance insightful for all.

4. Overall agenda can be formulated by experts from HBCs, considering the priority needs that can be addressed at the conference. Actionable items (considering the limited time of the conference) can be set so that after each session, participants can reflect on their achievements. Complex issues may still be discussed at the plenary. It would be great if participants attend such a conference not only to gain new knowledge but also to contribute their part in a way.

5. I understand your point in discouraging all-male sessions and panels. However, I suggest the use of ‘encouraging participation of female participants...’ as a better term. Country authorities from NTPs, NTRLs, regional, provincial and peripheral facilities including private stakeholders and experts are a mix of male and female representatives. Based on the recent Global Gender Gap report, a wide gap still exists (specifically in terms of economic and political empowerment). While this point can be an interesting action for promoting gender equality, this would not go well as easy as it was said. For now, we can only start by encouraging female participants to attend. At the same time, it must be remembered that the success of the conference is not solely dependent on whether the conference is attended by males and females or both, but is totally dependent on the cumulative efforts of all stakeholders concerned.

I am hoping that these comments provide insights to everyone.
Again, thanks to you, Prof. Madhu for coming up with the blog with a relevant topic.

God bless.

All the best,
Marlon

David Bryden Replied at 4:46 PM, 31 Oct 2018

Dear colleagues – Madhu’s article has certainly provoked a useful discussion! To his five very good suggestions, I would add:

Let’s ensure that the Union conference includes a workshop on advocacy and communication to achieve more funding for TB and policy change to support faster progress on TB. And not just in a pre-meeting but rather in the main event!

(Or at least some sort of symposium where advocates, activists and communicators to the general public can present on their methods and how others might implement them in some degree.)

I really think this is an essential area for skill development for the scientists, public health officials, and everyone else attending, in order to reach the goals we share.

I think we can all be advocates and activists in our own way and we can all develop these skills. Such as –

how to present a simple message about a complex subject; how to write a simple and compelling opinion article for a general audience; how to approach a parliamentarian; how to reach out to and build allies for policy change and funding; how to persuade a key official.

Some on this list are already proficient in these areas and could share their approaches!

Of course, it would be a challenge to devise a program that would span the diversity of political and social contexts, plus respect the diversity of methods. But that would be a good challenge to have I think.

At this Union there was a very good pre-meeting by ICSS and ACTION that covered how to advocate with members of Parliament. But I think we need something in the main event (and looking at a range of methods and targets). We also saw some inspiring direct action approaches at the meeting, so that is another example or tactic.

Just an idea… which I admit needs further development and discussion!

David Bryden
RESULTS
Washington, DC
USA

Madhukar Pai Replied at 8:26 AM, 1 Nov 2018

Hi All,

It is wonderful to see all these responses (I got a bunch of comments on the Nature blog + Twitter as well). If we want to see things change, we have to start by talking about them.

I want to clarify that my post was about ALL TB conferences and events, not just the Union conference. Several people commented that the issues I raised apply to all global health conferences, not just TB. I totally agree with that as well. Global health has a long way to go, and the attached editorial by Ambimbola is worth reading.

I have been struggling with these issues myself and the blog post was a culmination of that. I will give you these examples of the personal struggle/learning:

1. Since 2011, I have been teaching an Advanced Course on TB Diagnostics in Montreal. For 6 years, I did not make a serious effort to bring TB survivors to teach in my courses. In 2017, I woke up, and invited two amazing women, Deepti Chavan and Nandita Venkatesan, to Montreal. I invited them to open the course. The impact they had on all of us is not easy to capture in words. Please see my HuffPost article on this (https://www.huffingtonpost.ca/dr-madhukar-pai/tuberculosis-survivors-give-us-...). Since then, I have made a policy decision to open all my courses with a TB survivor/advocate. I am now extending this to all panels or conference workshops that I organize. For the Hague meeting, for example, I submitted a proposal with ONLY TB survivors and it was accepted.

2. When I started directing the McGill Summer Institute in Infectious Diseases and Global Health (http://mcgill-idgh.ca/), I knew we would get lots of applications from LMICs, and that many would struggle to pay the course fees. So, right from the first year, we had a tiered fee structure, with the lowest fee for LMIC applicants.
I then had to find sponsors to give travel support to NTP managers and TB survivors that we invited. With a lot of effort, last year we had over 650 participants from 50+ countries. But without making the effort, we would have mostly had participants from North America and Europe. How is that a 'global health' summer school? So, conference organizers in global health have to think through these issues and work very hard to ensure diversity and equity. It is neither easy nor inexpensive but has to be done.

3. Even with all the above mentioned effort, we were disappointed that several NTP managers either did not get a Canada visa or their applications took forever to be processed. When I first applied for a US visa from India (in 1998, to attend the Summer Program in Epi at Johns Hopkins), my application was refused within seconds. I know exactly how that feels.
So, to address this problem at our Summer Institute, we launched a plan - solutions included meeting up with Immigration officials to make them aware of what we are doing; registering our courses with CIC; sending additional documentation for visa purposes; contacting our local MPs for help, etc. With effort, things have started getting better. Now, every year, we anticipate visa issues and try and address them proactively. One cannot leave this to chance.

4. What about the need to organize courses in LMICs? I realized that there is only so much we can do to improve diversity in our courses in Montreal. So, we organized courses in India and South Africa, to increase our reach. See: https://www.teachepi.org/
But these efforts are a drop in the bucket – the real need is immense in LMICs and I am still not sure the best model to reach more people in LMICs (MOOCs, live streaming, online courses, etc).

In short, without serious effort, we will end up organizing global health meetings in high income countries, with the agenda dominated by experts (mostly men) from HICs. To turn this tide, we must reflect on what global health means (do read Abimbola’s wonderful paper), and how we will live up to the equity principle that is at the heart of global health (and TB).

Best
Madhu

Attached resource:

Ahishakiye Alain Replied at 6:34 PM, 1 Nov 2018

Thank dear Pr Madhu Pai for the effort you are making to end TB. I'm current work us TB focal point in one of the 4 districts hospital with high rate of TB in Rwanda. This year I was excited to participate in your conference at McGill university but unfortunately as you my visa application was refused. Then now with you email I'm encouraged again to apply. I need to improve my skills in diagnosis. We had many suspicions even now we have one 2 cas in isolation. One on oxygène with large part of dommaged lung. The other is a young girl which was multiple times consulting in OPD for récurrent fever and pharyngitis, Weight loss and cough. We Did sputum and by surprise we found that she had TB. Even another with back pain and Weight loss we Did by curiousity a spin x Ray with find him with spott disease. I remember another one, a young Man we treated in Surgery for cold abscess. We Did drainage and treated the wound. After 1 month he was back With abdominal pain with thought about diverticulitis but we Did by curiosity stool exam with oramin coloration it became positif we send sample for culture. It is all those cases. So Thank you Professor together we will end TB.

Ahishakiye Alain Replied at 6:42 PM, 1 Nov 2018

Thank you dear Pr Madhu Pai for the effort you are making to end TB. I'm current work us TB focal point in one of the 4 districts hospital with high rate of TB in Rwanda. This year I was excited to participate in your conference at McGill university but unfortunately as you said, like for some, my visa application was refused. Then now with your email I'm encouraged again to apply. I need to improve my skills in diagnosis. We had many suspicions of TB even now we have 2 conformed cases in isolation. One on oxygène with large part of dommaged lung. The other is a young girl which was multiple times consulting in OPD for récurrent fever and pharyngitis, Weight loss and cough. We Did sputum and by surprise we found that she had TB. We had another one with back pain and Weight loss we Did by curiousity a spin x Ray and then we fund him with spott disease. I remember another one, a young Man we treated in Surgery for cold abscess. We did drainage and treated the wound. After 1 month he was back With abdominal pain we first time thought of diverticulitis but we did by curiosity stool exam with oramin coloration it became positif we send sample for culture. It is all those cases. So Thank you Professor, I know together we will end TB.

Kathleen England Replied at 5:15 AM, 2 Nov 2018

Dear Madhu,

Thanks you for bringing to the forefront the need to expand efforts to building training and information sharing platforms. At the Union in the Hague, I coordinated and chaired a focused symposium on Human Resource for Laboratories (with the emphasis, of course, on TB labs). The attendance was maybe 20 people. That in itself embodied the essence of the problem, ... it's not a priority. However, the issue remains serious as the number of qualified and competent staff slowly dwindle in LMICs. In our session, we discussed the need for local solutions, upgrades to degree and certificate programs at local Universities, designing new curriculum to support the needs, and revamping the current healthcare employment schemes to build in ways for employees to advance their education, progress in compensation, and climb a stepwise ladder based on transparent requirements of education and experience. In essence, it is not enough to have the McGill courses, or Union courses, or FIND webinar trainings. We need solid solutions at local levels. This means we need to get people at country level to sit together (Ministries of Health and Education, Academics, Businesses, and various government officials) to address revamping the educations systems and building the necessary degree programs to provide the technical capacity needed to serve and staff national healthcare positions. With regard to laboratories, we are advancing into a new realm of technologies (multiplex, polyvalent, high throughput, multi-disease, molecular, automated, sequencing, and other various advanced platforms) that will require a new cadre of individuals to upgrade and support laboratory services. We need skilled microbiologists, molecular biologists, bioengineers, bioinformaticians, immunologist, procurement specialists, informations systems specialists, laboratory managers and administrators, just to name a few. National academic programs need to build curriculum and provide degrees beyond basic degrees in medical technology or medical lab sciences. Degrees with higher competencies and skills levels are now needed. In our discussions during the session, it was agreed that countries need to perform curriculum assessments and design a new path within academia for students and existing lab staff to expand their capacities, knowledge, and skillsets. Thus, I would urge organizations like the Union, McGill, FIND, USAID, WHO (SRLN), ASLM, CDC, ASM, etc. to start engaging Universities and Colleges and to invest in local solutions to building human resources at a national level through a more sustainable model. And I would strongly urge countries to take ownership and work to move away from external TA systems that are donor funded by building internal academic programs that will shift HR development and training to institutions. Thus, allowing MoH medical teams and NRL laboratorians to do what they were trained to do, medical and laboratory tasks focusing on patient care. As a former TA myself, I have seen more trainings and workshops being performed through donor driven agendas, that consume the time of qualified medical and lab staff. As a former Professor and academic instructor, I see an opportunity to shift this paradigm to a more sustainable model. And as a former student, I am passionate about building opportunities for the next generation of laboratorians.

Kai Man Kam Replied at 12:47 AM, 3 Nov 2018

We say "End TB" within next generation; so all those coming out and
committing today will very likely be out of work after their formal/
informal trainings; i.e. the career paths of all TB laboratorians is zero.

Anete Trajman Replied at 7:23 AM, 5 Nov 2018

Dear Madhu, dear colleagues



Thank you for raising awareness and starting this discussion on gender,
category and country diversity in TB Conferences. As much as we do share
your concerns and wish to increase access to TB conferences of high-burden
low-income countries’ activists, healthcare workers, survivors and NTP
members, as officers of the TB section of the Union, we would like to
highlight a few points related specifically to the Union World Conference. We
too would like to increase access to TB conferences for high-burden,
low-income countries’ activists, healthcare workers, TB survivors and NTP
staff. Along these lines, we would first like to thank the recent CCSA
members and chairs- including Stacie Stender, Rajita Bhavaraju, Keren
Middelkoop and others – for their efforts to make the selection of all the
activities of the Union Conference (abstract driven sessions, symposia,
educational programmes, satellite sessions and others) a transparent and
high-quality process. Thanks also to all of you and others who volunteer
for important tasks such as reviewing the selection criteria, the abstracts
and proposed courses, sessions and satellite sessions and even nominations
for the annual prizes and awards. The Conference is truly a team effort for
which all of us are responsible.



Secondly, as with everything in life, the balance between desirability and
feasibility has been a challenge for the Union. The LMIC officers (Nina and
Anete) feel it very deeply: this year, they paid half a month’s salary to
attend the World Conference in The Hague. While we agree that travel and
conference registration costs are very high for those working in countries
with weak currencies, many of the activities of the Union, including the
publication of the International Journal of Tuberculosis and Lung Diseases,
are supported by Conference fees and membership dues. The Union granted 72
scholarships to the Conference this year. This is insufficient, of course,
but most were granted to Southeast Asian and African registrants. Thus, as
a group, we need to find other financing opportunities to expand the
scholarship program (with selection continuing to be based on peer review).
We will also continue to promote high-quality research in LMIC, led by
local researchers, so that their abstracts are selected and they are
invited to speak and present, as has been progressively seen with the BRICS
countries, especially South Africa and the former Soviet Union countries.
Finally, countries themselves need to commit further to build capacity and
support the TB programs to such an extent that representatives can attend
the meeting.

With regards to the geographic location of the conference, balance is also
a problem. To hold it in a high burden country is not a guarantee that
people from other LMICs will attend. India is much less accessible to Latin
America and Africa, for example, than is the Netherlands, because of
distance and the visa process. At the Malaysia conference, there were very
few attending from India despite relative proximity, because of religious
holidays. Finally, financial issues are a consideration, however much we
might prefer otherwise. The selection of the conference venue is partly
based on a bidding process, whereby cities that offer more in-kind
contributions are preferred. This frees up funds for scholarships. It would
be highly relevant to review attendance by country, according to the
conference site. The Hague set an attendance record (also reflecting
efforts and support by KNCV, and increased attention to TB after the UN
HLM), and it will be important to document where the participants came
from.

This committee – which includes two women and two men, two from HIC and two
from LMIC - is committed to all necessary efforts to maintain the
transparency of the peer review process and to ensure diverse country and
gender representation. As the Programme Secretary, Anete Trajman will
represent the TB Section—by far the Union’s largest—in the planning and
programming process for the Hyderabad (2019) and 2020 World Conferences.


Best regards,



Anete Trajman, incoming Programme Secretary [Rio de Janeiro, Brazil], for
the TB Section officers:

Paul Nunn, Chair [London, United Kingdom]

Kevin Schwartzman, Vice-Chair [Montreal, Canada]

Rovina Ruslami, incoming Secretary [Bandung, Indonesia]

Wendy Wobeser, outgoing Programme Secretary [Kingston, Canada]



Em sáb, 3 de nov de 2018 às 02:57, Kai Man Kam via GHDonline <
> escreveu:

Ruth MCNERNEY Replied at 4:24 AM, 6 Nov 2018

There are lots reasons for attending international meetings.
It can be to catch up on research efforts and to network with other scientists. This is invaluable for establishing collaborations.
It can be to network with policy makers to explore new ideas for strategy and implantation practices
It can be for activists to get together and share ideas, celebrate their successes and recharge their energy for the cause.

There are currently too many TB meetings and there is not clarity as to which ones are best for which audience. It would be very helpful if someone could collate and post the dates with a summary of the meeting objectives and with links to the relevant websites.

I suggest the UNION should consider only having the World Congresses every second year, with regional conferences in-between. This would free up some resources and the Global Meeting could then be better attended and would (hopefully) have increased novel research findings to share.

There is need for much improved communication between TB activists, people working in TB labs, field/clinical officers/nurses and the scientific community including diagnostic test developers from industry and the vaccine/drugs trials communities. In 2009 I arranged for a TB survivor to speak at a European meeting on new TB diagnostics where the audience included academics and industry reps. It was wonderful to see the reaction she got from members of audience who had previously been isolated from the needs of people living with TB and HIV in Africa.

While some TB activists do attend the UNION meetings they don’t always have effective dialogue with people from other sectors. Let us learn from the HIV activists who seem to have stronger networks and a louder voice. Firstly they are very well informed. Organisations like ETAG run excellent training workshops for their activists where they invite academics/teachers and industry (pharma) people to share their knowledge. The agenda is very relevant because it is set by the activists themselves. Yes its needs some funds to do this, but its surprising what can be achieved if you try.

There are some opportunities for people from TB endemic countries to broaden their experience, including some that are not focused entirely on TB. The Mérieux Foundation run some interesting courses and there is sponsorship available for people from low income countries. For example for policy makers there is an advanced course on diagnostics https://www.fondation-merieux.org/wp-content/uploads/2018/01/9th-acdx-2018-pr...

And finally - we should not assume it is easier/cheaper to attend meetings if they are held in TB endemic countries. But perhaps it is time for us (rich?) Europeans and North Americans to start traveling a little more often to regional meetings in these parts of the world, instead of waiting for them to come to us.

Madhukar Pai Replied at 6:59 PM, 8 Nov 2018

Hi All,

Please see this story on how visa refusals affected the Women Leaders in Global Health conference held at the London School of Hygiene and Tropical Medicine this week:

https://www.thetimes.co.uk/article/refusing-academic-visas-is-threat-to-uk-s-...

Clipping is also attached.

LSHTM is now thinking of hosting global health conferences outside of UK.

Madhu

Attached resource:

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