Transcripts For CSPAN Center For Global Development Releases Ebola Report 20170810

Which a therapeutic is not exist does not exist. In most cases, the need for learning is quite acute. How many be accommodated when be how can the need accommodated when the humanitarian need is so great . That point, the leaders of the team finished the report ofently of a on the topic implemented crisis during the epidemic. I will turn over the podium to the cochair team, who is dr. Jerry kirsch, currently professor at boston university, and he is also managing a very important and exciting institution that has been created there where one can do research on emerging and dangerous diseases. This institutional desperately need any United States, and he is working hard. He and his copresenter, david peters, will be talking for about 15 minutes each, and then we will welcome dr. Carrie hesher from a humanitarian group who did more to save ebola lives than any other single group during the Ebola Outbreaks us then jeremy who is with from the ecb who supported the United States efforts to androl the ebola epidemic at the office of u. S. Foreign Disaster Assistance during that period. Now, i will send over to jerry. Jerry thanks, mead. Thanks to everyone who is participating in those who are watching remotely. We are grateful for your input. A committeenting that was formed at the national medicin to look at clinical result issuesh and there were that were present at the start critically,eak, so particularly for ebola, there is actually very little that is clearly known about how to manage a patient with ebola, to clinically support. There were no therapeutics or that have gone to human Clinical Trials that have shown to be effective and safe to use. That is sort of the genesis of where the committee began. What david and i are hoping to you, to is to hear from get some of your thoughts, particularly around two of the questions. I do not think we need to delve aspects of take study design, but how do you infect integrate research into an epidemic response . Past the time. I think we know clearly that it has to happen terrific question is how. Secondly, how do you create the overall governance and Leadership Structure and what might be the criteria . Tohought it was worthwhile back up just a little bit to some fundamentals. How do you develop new drugs and vaccines . The same thing could be said for diagnostic tests. The issue of human safety is not really as significant as it is to drugs and vaccines. The first thing is the science. You need to figure out what to target for a drug, what to target for enemy and response , a an immune response pathogen. A a lot of it is funded, this upstream research, is funded by public money. The Development Process is something that is done by industry. But you need to determine ultimately whether these things work in humans. Are animals. The food and Drug Administration animalten apply a two rule. Safety and efficacy in two different species. A different drug or vaccine, they differ according to species. And you determine whether it is safe in humans. When you have data from animal studies, you can get Regulatory Approval to start a staterun trial in humans, which is a small study, usually a dosing , listening for safety primarily. Lists of the infection or treatment. Is you can show it is safe in a smaller study, you can move on to a larger study, as well as indications that they perform as you expected, that a vaccine will produce an immune response that you think will be protected. Ultimately, it follows that goes well and something is licensed and is produced, safety trials on a larger scale we really begin to look at the efficacy and more safety data. Most of the candidates that enter into the process fall off for one reason or another before three. To phase one of the questions that might be asked is is the search during ebola different than other things we have done in the past . The first thing is high mortality, no room in treatments, and experimental human infection models are not possible. Leraan do that with cho because we can treat you. Human models have developed vaccines. With an infection like ebola, an used for human trial. Measles, as we know, as a highly safe and highly effective vaccine, cholera, we know how to treat, it is now already achieved an effective vaccine. Ue, but it iseng not difficult to see that trial. They needed a large number of patients all the time, and they need to weigh not a recent sees. Need typically not a recent disease. So why do we need to do research during Ebola Outbreak . Bested to learn how to efforts expectations. I am a physician. I look at what were doing. It is a corn with two sides one site is taking care of people, and the other is learning how to do it better. It is part of the model being in the health care profession. Onassess and investigation and advocacy in efficacy in humans, animals in general do not reliably predicts human response. We have to go to human trials to show that it is working. , youu have good vaccines will actually be able to use them to limit an outbreak. You can use of potentially to prevent a future outbreak. When it fails to prevent an outbreak and you have people who are sick, you need to be able to treat them and treat them effectively. Drugs at a higher standard of care maybe important to survival and reduction and consequences. Of advancing medical knowledge in general and patient care, and for the fda says about Clinical Trials and why they are needed. When we do not know if or how well in your approach will work in people, which are better and n subpopulations in which a treatment may work better, and what is the context . You need that information before you can improve something, a manufacturer can distribute it and use it. Expandapidly possible to. They say Clinical Research is not necessarily for the person who is involved in that clinical trial, but certainly for the future, it is potentially available to individuals who are themselves suffering from a disease, and progress can be made and shown that it can be beneficial. The Clinical Research that was done during the outbreak, we learned very little definitively. Because of the, the National Academies were asked to assess the trial and recommend improvements for emergencies. Health and human services, the assistant and they, the fda National Institute of Infectious Diseases, the academy created 15member committees in the u. S. , europe, and africa. Had three public workshops. Veryd six meetings, comprehensive literature review, Conference Calls for mickey and incredibly accidental Conference Calls, and research. Effective in s not that patient zero rural getting who became ill in january 2013, by the middle of january, the cases aat trial resulting in similar case were recognized as unusual, and the officer out in the goonies in guinea notified the ministry of health, that something unusual was going on. They came to the conclusion that only becausea diarrhea was a part of it, and they had outbreaks of cholera in the past. It was on her mind because the diarrhea was bloody. They did not identify it, it was not until the after part of february that the Ministry Said this may be something different, and they and take ane to come look, and the response was immediate and strong, and they said, this is like a hemorrhagic fever, and the diagnosis was made in the middle of march. The last two months from the point of which an outbreak was identified, and that was really important because at that point already, it has crossed borders into contiguous countries, sierra leone and liberia. And enterprise was built to take care of patients, and they quickly realized that this was out of control. And was different from anything ,heyve ever done with ebola and they kept saying, this is different, this is different. We had dont with smaller, contained outbreaks, the relatively easy to control. Did not recognize, do not agree with them. They declared as a moderate event, which in their languages level 2, which can be supported by the Country Office and regional office. Thephysicians could not get recognition that they need. And it was not until august that the highest level of concern of emergency of International Concern was declared by w. H. O. International response was starting to kick in, and the possibility of doing trials depreciated. Six months had gone by, and there were thousands of infected people, which has never been seen before in an Ebola Outbreaks. Overtimately, there were 28,000 defective come over 11,000 had died. At the beginning, there were no vaccines or treatments, and went inaugust of september 2014, starting to think about Clinical Trials, things started to come out of the woodwork. There was still about 20 potential candidates to be studied. This is a timeline of the outbreak in terms of best cases. The three lines here are the three countries, the three target countries. Here is the middle of march. Ebola is declared. Here is when the International Concern was raised by w. H. O. Outbreak response starts to kick in. It is sluggish, and it is several months later before the outbreak starts to come down. The trials that were done, this is a vaccine trial, you can see they are all initiated when the outbreak is really coming on. You can see there are two cases, and that had major implications for the results. And here are the results. There were five trials. None were conclusive that is worked in what is safe. And was a. Safe. One suggested efficacy, but it will not be enough to convince a Regulatory Agency. And [inaudible] so the initial therapeuticss that for not contributing to mortality. Safe in a context in which a Regulatory Agency would want to see, not at that point. Not from the nature of the data. Trials, oneine effect,e had a possible although it got publicized last december as 100 effective. The problem is that conclusion, is that therview most appropriate Statistical Analysis was not apply. Analysis, ity that was about 65 efficacy, but the at was 0. E around th salt could be incidental but it was effective, but it is toby not effective. So it looks promising. Throughll need to go Clinical Research. Ebola will be the next outbreak. Index outbreak is unlikely to be as big as this one, which means we really have to be prepared to move in as quickly as possible. The Clinical Trials that were inflicted in january, you go through september, october when they think about going through something, getting it approved, the logistics, the rapidity with which with this happened is remarkable. The conditions on the ground, i will talk about that, and they were really chaotic. And because of that, if you focus on the people who are sick and dying and their families who , that was sitting in front of you as something that is important, why are we going to get involved in the research, particularly with patience and presented equipment . There were physicians made it difficult to provide care, let alone having investigated there. There was no consensus on the study or how to organize it. There was very little experience with ebola. They had recognized ebola, although it turns out they had evidence that the virus originated in west africa. And advanced unrecognized, and unrecognized is unknown. There was a failure to engage the community in the process. Some of these experimental therapies were used in asian that were evacuated from west africa. They seemed to do pretty well. Mortality with very low. Suddenly there was a magic medicine, magic syrup that was being given to the foreigners but not the africans. Trust anda lack of their history of civil conflict. And then the Research Group done toes were poorly a triage,lves into knowing what to do and how to do it, and i was particularly as the epidemic was being controlleed. So research is necessary, the best way to ensure that this can be done in these kinds of sentences is to think of it as an epidemic response. The we can be organized tour together. The question is how can you do that . The analysis of the report is clear. It is ethical and has proved to be feasible to do randomized trials. What we need to do is prepare the community through engagement. If it is quite useful at all, it has to be scientifically rigorous and design in a way to produce useful information. Is kind of planning and organizing begins before an outbreak occurs that is right now and requires national and International Cooperation across everything. , Community Participation in the process is absolutely essential not only to cure the epidemic but before the next one happens. [inaudible] you cannot do the Research Without it, but also, the community is part of an effort, so excluding the makes there was little capacity to do Clinical Research, but the key part of our message is that we dont want to separate the research establishment. We dont want first World Research agencies going into liberia and building a beautiful study war in a decrepit hospital where the level of Clinical Care is all. Wful. It have to be across the ,pectrum of health, vision response and Clinical Research. These need to be linked together. Investment is needed now to start moving towards these kinds of prepared response and Clinical Research. Processes. To be linked engagement, coordination among development covers that brought agenda is critical. How do you get the optimal leadership to do this . It may be different if you are trying to do Clinical Research than it is if you are trying to do a clinical intervention. Setup of my setup of my remark. This broader picture of what was going on, what are the needs, response of Clinical Research and why it is necessary. Hopkins and is at the chair of International Health and has great expertise. He would try to raise some of the questions about how do we go forward and how do we create collaboration and leadership to do it. Me. D thanks for inviting im very happy to be here. I want to follow up on the in termsat gerry made of the governance and leadership aspect of the work. I will start with International Health regulations. The ihr, this is a legacy that we have. The legal iterations go back to the 1950s, something that was inherited. It is really about setting the conditions to have an International Protection in response to epidemic diseases for purposes of Public Health and trade. That they haveis not working very well. The problem is it happens from time to time. What we saw here in the failure ihr ihr is basically not just the inability to have the surveillance and Rapid Response, but really in the whole preparation side of things. Who is tasked with preparing countries. Countries are obligated by legal agreement 196 countries to have the in terms of the governance and leadership capacity. Very few of them are. None of the west african countries are in that position. I think liberia is the first one to even do an assessment to this capacity in 2017 and have a long way to go. This is a problem with capabilities. It does have clear governance structures led by who, but he can call on other experts and organizations using this roster of experts and an Emergency Committee and review committee. Was after the sars epidemic. Hopefully, it will be further revised and anything be an area we need to put a lot of emphasis interns of making it in terms of making it work better. Not because of capacity constraints, but lack of enforcement or public accountability, and in fac capa. T, a mandate there been and governance shropshire to incorporate research. What we are seeing is this growing consensus that it needs to be part of the epidemic response and we need to find ways to Bridge Research and practice into the effort of epidemics. How do we do this Going Forward . This is really what i want to talk about about this work in progress. How do we fill this governance gap in terms of moving forward with leadership and governance around research into epidemics . It is a social construct and it is highlighted in the goals in terms of International Affective institutions. The issue around Health Research and epidemic response is that these are really broad stakeholder networks. They have very different interest capabilities, mandates and asymmetric levels of power. We really need to have a governance model that actually recognizes and addresses these concerns. We need to learn that. One thing that the report did was highlight the broad stakwasa knot of stakeholders. Amount of stakeholders. The Regulatory Agency Research Health Health Agencies are critical and often not talking to each other. They may have different design as things move forward as terms of clinical design. Who as a major role, unicef is involved, humanitarian agencies have played a critical role. Over 70 different humanitarian ngos were involved in the outbreak. Other groups related to research, foundations, professional associations and industry. Pharmaceutical and diagnostic companies, industries involved and Civil Society. In the report was we propose a type of governance structure for basically a set of functions and principles that need to be adhered to. Inclusive,les are autonomous and independent organization. There is always an epidemic going on, but between major crises, we need to be better prepared. What is really needed is bringing together these types of stakeholders and not just the government to government and vocational selective involvement but involving Community Representatives within the academia and industry. The purpose of this group is to really do things like how do you prioritize the researcher that needs to be done, doing the research before that. Being able to identify standard types of research design. Being able to identify standard agreements. All the things that slow down research when you need to respond quickly but also to identify the key players, the actors who can be there for, be called upon for this next group, this Rapid Response workgroup. The r3w. The idea is that when an g that yous emergin expertisee who have in that specific expertise in that specific virus. You need that kind of emphasis. You need to bring in those who can do the regulatory work, that idesign. We propose that you need to have this kind of group that is brought on. That Standard Operating Procedures ahead of time. These are the two kinds of functions and sets of organizations that we think need to be set up. A coalition and the Rapid Response group. We looked at what is happening in current models. We looked at what who does, what the coalition for epidemic preparedness and innovation does. None of them are perfect fits. There are huge problems in terms of capacity, but we really like the approach in terms of bringing the full set of stakeholders and bring in the international coalition. What we are proposing is we dont have the perfect model right now. We have to move toward Something Like that. We may not havever have a perfet model. We need to bring in the full set of stakeholders and have these capabilities. As we move lowered, we need to think of what other key issues in terms of establishing some of those governance arrangements. We have gone beyond the report to think about a working group and what are the things that need to be involved. We need to have clarity and recognize there are differences in commonality stakeholders. We need to look at the different stakeholder ideologies and accountability and set of governance that addresses these issues. One of the things about Global Health architecture is you have ofeally unruly align characters and we go at it with negativity and this trenchant opposition with certain groups and favoritism. Andcan never have industry who is the same way. These kind of patterns we need to get over. Need to agree example . David it is hard for who to work with industry, pharmaceutical industry in particular. I think they also have and difficulty in how do you bring in Civil Society organizations. Ill think it is entrenched opposition but i think it is lack of opposition. One of the big lessons of the Ebola Outbreak is really need a civil siz society engagement. Community engagement, absolutely. That is a whole talk in itself. Processeso deliver that account for these things legitimacy, inclusiveness, authority and accountability. Some of these are not new concepts. There was a really good book politics of evidence that looks at these issues. Of questions of Better Things on the table that should be addressed. These are not simply historical questions, but things that are being neglected or should be addressed. Now, there is a group of interested parties that includes welcome, who, National Governments and there is consensus about this bringing together Collaborative Research to say peoples lives during crises. There is probably some agreement around the goals, but these other things like what is the Research Agenda and scope . Pathogens to include. It include my free Ankle Research during an outbreak . These issues around global capacity building, what kind of accountability you want, and the sharing of benefits and cost. This is all contested territory that should be made explicit as we develop governance arrangement. Also power and accountability. To this day, who is claiming they are the only organization with a vested interest. They are certainly dependent financially on government and foundations. We have certain it include my fe ideologies, organizations have their own belief about what is evidence, who should own intellectual property. Previous guidelines and things that you haveprevious guidelines that you have done, clinical guidelines or programs. You get vested interest. This issue of power is critical. Who will pay for what is going on and who will implement it . That may actually determine what gets done. Accountabilityf do you want to put in place . Recognizing that different agencies have different kinds of accountability. This is an area that has not been systematically addressed, for many issues in Global Health government. We haveprinciples, yes, this group that put together a socalled global coordination method. It is good work in terms of applying these mechanisms. There is a who blueprint for top priority pathogens that a group of scientists have prioritized, but it is not the only list. There is a list at edinburgh that has 39 pathogens that have the potential to do this. There is overlap, for differences in terms of how do you prioritize . Is it technical or a political issue . Other principles they have brought in terms of using evidence and broadly about accountability but there are things that are not there in of how do you of how do you ine beyond government and selective people in the Scientific Community . How you get them to the table . Who gets to choose who is involved or not . Cdc china is probably going to be the biggest investor of Public Health infrastructure and if you dont have them at the table you have to wonder if you are really having a Global Governance frameworkk. Usaid has rules that in terms of capacity building. Society,ies and civil in terms of how this is being done. What universities are involved . And it is not just because hopkins is not involved. A big issue on how you reduce conflict of interest and how do it . Properly balance its related to the deliberative process. So, right now, there is a default type of approach that governments should research should be under a Single Agency headed by who just like the International Health regulations. They have the capacity for all the functions we will talk about that in the second. The second is how do you avoid conflicts of interest because that is a big deal in research. Arrangementsion is need to have a distributive approach because of the wide sets of leadership and different specialized areas, then we need to balance accountability. We dont really know how to do that but we need to find our way to get around that. Again, both of them will have issues around these questions of legitimacy, authority and i can nd accountability. Even if you have the it . Mandate, the question is you have the capability to manage Research Functions . This is a set of Research Functions partly coming from the report, but these are the full cycle of Research Functions on how do you do research and development prioritiezition. There is the funding commissioning, the ethical review, conduct, how do you communicate that . There is legal arrangements around intellectual property rates. As well asroducts the regulation of the as well as the regulation of the products and translations of policy. These are the full set of Research Functions that you need to incorporate into epidemic response. You want to have leadership in them. They are built in conflicts. The idea is that, highlighted in the report, is you probably should not be doing certain things that are in conflict with the other. During the mandate, epidemic, is observed as a who prioritization effort. Lots of difficulties with doing that because that should have been done ahead of time. It also commissioned research and unusually because this is not what happens when you play they were not subject to ethical review. Analyzing its results, one of the trials and its results that was the trial they were involved in. And communication of results and policy decisions. They were not subject to ethical review. They were involved in all of those. So, i think the question moving forward is how can we have a more balanced leadership role . How do you create this . Two slide left and this is a bit difficult. This is the list of all the leadership Research Functions around governance. This is the same list it is like a correlation matrix. Basically, what we should be asking is do we have a capabilities and the right balance of accountabilities to be able to do these things . For example, if you are funding and commissioning, should you be doing ethical review conduct an analysis of the research . Typically the answer is no in research. That is similarly, if you are conducting the research then you should be deciding about who gets the intellectual property and regulating. These are issues that we would say Going Forward as we develop isance is asymptomatic a systematic approach that can be taken on capabilities in which are in conflict. These are ones in conflict and ones that played all of those roles. Just to lead off, how can we do better . I think our message is going back to the report, but we need to engage a broad range of stakeholders for a global correlation mechanism. We need to seek agreement on the goals. We need to develop mechanisms that address Network Structure as well as the balance of interests, powers, ideologies, and process iss moving forward. I think there are things we can do that will help, not just convening, but analysis to help us to be able to do that thing better. In termsi think there are thingn of having stakeholders together, we need to really prepare for the working group, or the sets of working groups which would have available and its procedures to have a Rapid Response Research Workgroup for the next outbreak. Dohink there is a lot we can of. It is a work in progress and we are hoping the reports and further discussion meetings like this will help us as we move forward to be better prepared and rapidly and effectively major threate next to Public Health and emerging Infectious Diseases in particular. Thank you very much. [applause] the staff is helping. Sorry. Thanks, ladies. I think you are here. We are now entering a more interactive meeting. Watchingo are online, the live stream version of this should know that you can submit questions via twitter. Cgdtalks. D use the to ask our two invited panelists, gerry and jeremy, to comment. We will start with carrie. Carrie has been mentioned several times during the talk. I wnant to hear your reactions. You and i share the fact that we both served in the peace corps. Neighbors. We were neighbors in that sense and i know you have experience in developing countries in crisis situations and also leading part of the Research Effort at msf. It gives you a unique insight. Im wondering if you could respond. One particular thing i hope he will speak to a little bit is those red squares in the penultimate slide that david presented where he was talking about potential conflicts that became manifested during the Ebola Outbreak. The organizational structure which had who essentially doing everything. Carrie thank you for having us here and msf here today. Were always having to be part of the discussion, especially when it comes to the experiences we have had. First, also, the caveat im speaking from the msf perspective and experience and very much speaking from my personal experience as a medical epidemiologist in the science and field of medicine. One thing to start off is we internally have, an internal capacity and internal institution that conducts Operational Research and epidemiology. In the humanitarian context. We have had this experience for over two decades on a different scale from other institutions but it is definitely there. There is capacity to do this but ,e also at the very base of it where we are a humanitarian and Aid Organization. To have careave and treatment as well. Think you can have a Clinical Research agenda around therapeutic vaccines, diagnostics. We applaud that effort but we also think you should have a Research Agenda around Operational Research questions, Public Health and Clinical Care. Because delivering Clinical Care be it collecting data physically by writing a pen or trying to treat a patient on the ground, that needs to be looked at as well. State what was stated earlier was the next epidemic is now. In the report, a lot of discussion about a nonepidemic period and an epidemic period. It was not to the scale that we saw in the Ebola Outbreak, but there was 2017. Last year, there was meningitis c. This year, ebola in drc. For us as a medical humanitarian Aid Organization, will like to point out on the ground the realities are on the ground the next epidemic is here. Scope of the 20142015 west africa ebola epidemic was unique in some sense. Need to at least recognize the problems extrapolating that experience to all future Clinical Research or other future events in which to engage in. It speaks to our point in terms of the need for flexibility. We also, from the earlier parts of the20142015 presentation, we had contentions with the who at the time on the field. To we would also like reaffirm the convening legitimacy of the who in terms of norm setting. And really want to include the reaffirm the convening legitimacy of the who in terms whos r d blueprint as a step in the right direction. We think it reaffirms whos role in this process and the need to continue funding to do that work. Really circlingwhos back in tt we discussed, were a medical humanitarian Aid Organization so the testing we do on the field, we want to ensure it is beneficial for our patients. If the tools cannot be used in our context, we are not sure why testing and having these questions in that context makes sense. That leads us to our example more recently about the vaccine. It is not a thermal stabilized vaccine. Even putting aside the very large regulatory issues available, we cannot use it in rural drc even if we were able to from the regulatory standpoint. We cannot get anything that is negative degrees to the context where we were. In east of the appropriate as well. We look at the report and we key messages that we think should be amplified. Discussions on norms, priorities settings, we would like to reiterate. But talking about issues of less f flexibility. If we think about it in terms of vaccine trials, the ebola vaccine trials specifically, different results depending on the vaccine candidates, target population, and a preset protocol might have been more constraining than liberating or fasttrack ability at that time. We like to say that protocols and ethical guidelines for specific Clinical Trials or specific vaccine should be put in place beforehand because it is clear you cannot do that during an epidemic. Our next message is accessibility. We need to ensure that the technology, be it vaccine, therapeutics, diagnostics are affordable, appropriate and available. Thats really some of our key messages as well moving forward. I talked about standards. Last, about involving affected communities as well. I think we need to look at the role of both national and local governments, as well as local communities not only participating or being part of the discussion, but also finding research priorities. The argument that the changes and was largely driven by the community is not something that we should ignore. From our experience, the peak of the epidemic, 4300 msf staff working in the ebola treatmentfrom our staff, 4000 we national staff. Though centers. Over 4300 we are an internationl humanitarian Aid Organization, our staff are part of the community and we are part of the community. It is really close to home about ensuring effective communities. Wow. You really spoke to the issue there, carrie. I appreciate you participating. Lets go to jeremy. Responsibility of directing a large part of the United States response to the ebola epidemic from his position at usaid at the time. It, it wastand responsible for a large portion of the financing of the external response and the support. I would say jeremy also attempted to work straight and orchestrate and coordinate a ,ot of the american response coordination between the u. S. Gents and those people so jeremy comes to this with a lot of experience at trying to really deal with how to get that humanitarian support out there. I think, jeremy, you also probably saw some suspension with the need to do research at the same time the humanitarian services were supported and i hope can you speak to how hard that was for you and whether this report, if it had been available through 2014 would have helped. Eremy thanks. During the Ebola Outbreak we were tasked with managing the u. S. Emergency response to the outbreak in the c. D. C. And u. S. Military. So i come at this from the operational side of things. Im not a doctor, im not a scientist. But i have a long career in humanitarian field operations. I now serve on the Oversight Panel that w. H. O. Established after the Ebola Outbreak to supervise the impreten station of their ebola reforms and the management of those new structures. And see from that vantage point. This is an extremely important issue that we had the tools at the outset of the outbreak we needed to contain. It was a very close call. We came very close to seeing this outbreak of even more completely out of control to a point where its hard to imagine how it ever could have been contained without doing dramatically more damage than it did. We didnt in the end need these Research Products that did eventually emerge in order to contain the outbreak but we very nearly could have had it been worse and its very easy to imagine. I think we have to expect that in sometime in the next 50 years well see an outbreak in the world maybe much sooner than that where the tools available to us at the outset will not be enough to contain it and we will need to have real time medical innovation to deploy in order to defeat the pathogen. And so this is a very, very important and pertinent issue. One of the big challenges in any Emergency Response and certainly in some future epidemic responses, this band width, the basic band width, its interesting to see the points of convergence around what this report identifies as uccess factors for Real Time Research factors and what we see by and large. Thats where bandwidth is important because the communities and Health Providers are jockeying in the same space and everyone has finite band withs so if you need the report talks about the importance of figuring out the legal and ethical parameters with the host government and the host authorities. Those host government authorities are also charged with a million other things, so getting this on their radar screen will have to jockey for space. In the case of west africa, this was a real issue because n. I. H. Wanted to send in research teams, usaid had an Emergency Response team on the ground, c. D. C. Had a large Emergency Response presence on the ground and just one very basic example how this would play out, the embassy and country has to manage all these different visitors. And it could be difficult for the ambassador would sometimes be a little skeptical about why do we need yet another u. S. Government agency showing up to do something that, ok, theyre going to do medical research, how important is that . So these are some of the realities that this kind of a report is important in highlighting to an ambassador, to say this is why its really important to give the country clearance to the n. I. H. Teams so they can come in and do the research. One problem we had at the outset of the Ebola Outbreak was that the Public Health specialist and medical specialist and humanitarian specialists really didnt have much of a common language or a common operating platform. M. S. F. , because its inherent to the nature of the organization, the u. S. Government didnt have that and where broadly most of the humanitarian field didnt have that. And so thats i think one of the important aspects of what theyre proposing here with this i. C. F. , as you called it, begins to establish those touch points, the connective tissue between the emergency operators and the Public Health specialists and the scientists so that when its go time, their relationships that need to be in place are in place and the common language exists and theres more interopper ability and we didnt have that at the outset. With that sort of context in mind, a few things that i would highlight that the report talked about and one thing that i didnt see a lot in the important i think is important, to the First Community engagement, an important issue for doing research and response in large is the fundamental ssue to the response at large. Ere inevitableably will be challenges among research against a larger push thats fundamental to the success of the response. And those will be put together. There were problems in the early days of the response with just massive confusion about what the disease was and how do you protect yourself and what do you do. Getting a clear and consistent message and establishing a clear and consistent trusted authority thats transmitting those message is very important. There were interesting differences across the three countries in the level of Community Awareness and the level of the types of Community Behavior you saw and some of it had to do with how effective the government was and we saw the key messages at the Community Level in liberia than we saw in new guinea and had to do with the populations trust in the government and the particular avenues through which they were being engaged. So dropping another element into that can disrupt some of that balance and it can affect the credibility of interoculars. That needs to be carefullyly handled. What do you mean by another element . Jeremy dropping your research element. You want to hammer on the core messages of how do you prevent it from spreading and how do you protect yourself . Part of the core messaging is it you are the only way to protect yourself, the only way to protect you and your community or the best way is you have to get people isolated. And talking about what the treatment entails and research is inherently and unknown in that. Were going to treat some of you with this, were not treating others of you how do we explain in r. C. T. , how do you map the explanation of an r. C. T. Process into that Core Community mobilization messaging i think is essentially pretty delicate and needs to be very carefullyly handled. Would you say its impossible . Jeremy it was done, right . Its proven to be possible but very delicate and very difficult. And again, i think my point is it needs to be mapped very closely within that overarching community because if its done separately its going to create confusion. Also struck in the report by the highlight on patient data and the difficulties with good patient data, and that was a huge problem for us in the Operational Response. The data was terrible. At the outset. People could be counted one time there was a case when they were first identified in the community, could be counted the second time as a case when they were admitted to the clinic and potentially a third time if they were transferred to another clinic or a third time when they were if they passed away and were buried. You can have one case because of initially its impossible to track people consistently across Different Centers and avenues. And that made the numbers difficult to track and in turn made the response difficult because a response that moves so fluidly, you need to have good real time information in understanding good real time visibility on how the disease is moving so you know how to orient your response resources appropriately. And we didnt have that at the outset. You need that as well because youre projecting out what this disease might do based on what you think its doing now but if you dont have a good picture of what its doing now its hard to project what its going to do. So huge issue for the Operational Response and so interesting to see how its man fethsing manifesting in this issue. The challenge is how do you get a good Data Management architecture in a very low tech , very difficult operating environment, complicated logistics, you know, unreliable Power Sources and so on. And the spitballing real time here, i think theres some fascinating work thats been done with biometrics in other humanitarian context so using Biometric Registration for refugee arrivals which can be done in a very selfcontained way and very hostile environment. That may have some applicability here but in any case, whether thats the solution, this is an area we need a lot of progress and innovation because it was such a handicap in the early days of the response. And it wasnt until rosling went out and took a few volunteers and u. S. Military personnel with due data entry and he and those soldiers and several liberian counterparts sat in an office in monrovia and scrubbed the data and thats when we started to get a much more accurate picture of what this outbreak actually looked like. Lets move now to the general discussions. I want to give a chance for both jerry and david to say one or two sentences only, please, because we want to leave time to ask questions but in response to this as a comment. I think were in general agreement with the points that are made. The issue for us now is, as i said, lets go from words and thinking to taking some action. The time is now. It is true there are outbreaks and epidemics going on all the time. It is one of a scale, a time when you can actually have these kind of conversations. I think i dont have much to add except were on agreement on the basic principles and really we need to know the next steps now and the design is absolutely critical and i think you highlighted, also, the importance of what is the Research Agenda, its not just r d and not just production and really some of the downstream access and also some of the other epidemic related research that needs to be done thats been really kept behind and its an oper tune time to address those issues. I just want to emphasis emphasize something jeremy said and resonates with me because of my long experience now in looking at the economics of the h. I. V. Aids response and thats patient identifiers and one of the challenges in managing hivaids response which is a much different time frame and years and decades rather than only weeks as it was for ebola but one of the problems is a patient gets counted multiple times and gets missed when they change from one treatment site to another, they get missed and when theyre identified as h. I. V. Positive, so we dont as good information as wed like with respect to whether patients are successfully making it through the entire treatment cascade. And so this issue of a patient identifier strikes me as a common theme with this. And im wondering if carrie and jerry and david would agree that as a part of the technical fix that can be prepared now as we prepare for the next epidemic, strengthening identifier systems in countries is a necessary foundational step in order to prepare for the next outbreak. So jerry, how do you feel about that . Jerry thats basic Public Health and health systems, its absolutely essential. No argument there. Carrie, how do you feel about it . Carrie the answer for us is yes except i think its a little bit on the biometrics identification as a humanitarian Aid Organization, we kind of step away from it a little bit. You agree it would help you with your epidemiology and humane therien tracking of patients but youre worried about the ethical implications. Carrie exactly. Those ethical implications could be effectively addressed, then youd feel more comfortable . Carrie exactly. We can mitigate that end of it. Why you need the engagement of community leaders. Absolutely. Im not sure exactly how much time we have but lets start to take questions from the audience and also, roxanne, if you have questions on twitter, let us know. This lady in the front. My name is joe lapenn, anthropologist converted to a Public Health practitioner. I did my degree in the department of International Health at johns hopkins, in the days before it underwent what i would call the social awareness revolution and became the bloomberg school, so im very happy to hear so much discussion about the importance of communities and social awareness, etc. , etc. Theres one role i did not hear mentioned by anyone in this fascinating and very thoughtful presentation and that is the role of the anthropologist. And i would say the anthropologist with a capital a because that would be a key role in the area of prevention and a key role in the area of stakeholder engagement, a key role in the area of mediation between the Different Actors and also between the researchers and the community to make the research possible. So i would hope to see at some point that the anthropologist becomes a key player in this process. Lets collect two more questions and then turn it other to the panel. Two more questions . Can we get two more questions . If not the anthropology question is going to be featured. Ok. Im very curious myself given the importance we have one more. Yeah. Stacy edwards. My question is about u. S. Government funding for research, which seems to be on the decline and the proper acting of some of the n. I. H. Fix on that. To give you an appetite on this kind of work youre proposing. Good question. Please introduce yourself. I am interested in these fields. I used to sit on several bodies of research coalitions, low ball research coalitions and thats what youve proposed for this very Ambitious Program and could you maybe comment on some of the Lessons Learned from this kind of research coalitions, its not for the first time, right . So i would be interested. Skepticism, auk. The role of anthropologist, none of you, nor did i mention that word. The funding possibilities Going Forward and skepticism about davids very ambitious plan. The very useful have a leading part of the Community Engagement. I would say having that standing anthropology platform, and also there are sociologists involved in the whole science aspect of it. I would say thats one of the questions in terms of what is the Research Agenda because i think there are huge questions on the applied research that it plays as well as the actual programming. Its not just strictly research, its actually an important part of the Community Engagement approaches. Rapid an throw low podge cal pid anthropologist perspective and there are some groups working on the accountability space as well. And i would say some of that research is particular in terms of looking at some accountability, mapping and accountability ecosystems that would help us as we move forward and more organizational and really is crossing disciplines but some of the same types of methods and tools would be useful both at the global level for the global mechanism as well as the practice and research around the response. Quick to auk, he was formerly my boss. I want to make one point, you can chime in as well. As you can imagine these kind of Clinical Trials on therapeutics and vaccines, the expertise was coming from outside of west africa and at High Level Research organizations. It was interesting that at the beginning, they really hadnt heard about social mobilization and Community Engagement and why you really needed to make those connections and once that started to happen, things began to move and in fact we said in the course of the presentation that in fact, randomized control trials could be done. But only when the community was engaged and understood what the rationale was. This connection is as intimate as could be and has to be done better. Would you say a key requirement is the community understands the depth of the ignorance in the medical community about what really works. Theres lots of therapeutic misconceptions. Im not saying the community itself had misconceptions. Im saying i would think that for the community to endorse in r. C. T. And the concept of r. C. T. Theyd have to be convinced actually theres no cure. Currently theres no cure. And if they understand that, that youre trying that the best people in the world dont know how to fix this, that might be sort of the first step. You want to talk about the early messaging. Go ahead. I think thats rather important. I think it would be difficult to assume that because what we found was a lot of the early messaging that did not work was around ebola kills. And theres no hope. Also a sense of hopelessness and that undermined both the response and the research. I would say its really around therapeutics of hope and understanding some of the constraints of that is the approach i think. Thats one of the issues that led families to hide patients which led to more transmission. There was a very telling moment we had at one of our open meetings in monrovia and one of the senior clerics in liberia, who got engaged in this sort of late in the fall of 2014, when they discovered Community Engagement, social mobilization, so he said that in addressing his congregation and talking about the burial, very traditional religion, handon, the touching, all of the things that exposed people, he said when christ talked about laying of his hands, he didnt necessarily mean skin to skin. You can lay on hands at a safe distance and suddenly the acceptance of the safer burial practices turned around. And its those kind of insights and messages that need to be there from the very beginning. So when we call for what is, quote, interepidemic period, its just to get the conversation going. Some of the lead researchers in this field say theyve never heard about social mobilization, a new concept to us. Now is the time to make that connection happen. Its fair to say ive never d accountability equ eqisystem heard today. M. S. F. Conducted a lot of operational and applied research during the epidemic, both in the beginning when we heard deafening silence from our colleagues in the national and international and across the board of not there in the field but when we were in the field and when others joined us as well is that included including most certainly with anthropologists to help deliver the Community Messaging and the Core Research which enabled us to get the patients treatment. The role and sporns of anthropology is really well recognized coming out of this. Any time you hear social mobilization and Community Engagement, youre talking about a role, for exactly that function and the reinforcement and i know that among the reforms of w. H. O. Is now carrying out is also building more of that capability into the w. H. O. Emergency response section. Just quickly on the funding. It remains to be seen yet what will actually happen. There have been cuts that have been proposed by the white house that are incredibly irresponsible and would be incredibly damaging. Im not a u. S. Government employee anymore so i can say hat. Though really deeply irresponsible. What is encouraging is those cuts have not gotten a lot of fraction in congress and congress ultimately writes the budget. So i think there is some reasonable hope to hold out some of the more damaging things that have been proposed will not make it through the congressional appropriations. Its hard to have the level of confidence in Congress Based on past performance, but i think there have been some strong signals. In fact, when the president s budget proposed reducing n. I. H. This fiscal year, for the remainder of this fiscal year by a billion dollars, congress increased it by 2 billion. And that increase of 2 billion is the set point, if theres a continuing resolution for next year, the budget is now 2 billion more than it was a little while ago. So one of the things that we are trying to do as a committee, were not getting into the politics, but raising issues and in constituencies and the public to respond to and challenge u. S. Government policies that are being proposed and sometimes implemented, we need to raise the alarm. We need to get the Larger Community in agreement that our health is tied to the health of people elsewhere and that Global Health is relevant to us. And thats part of what were trying to do in disseminating the issues around this report and activities that the National Academies can do. Its not an implementing organization. Its not going to be in the field with you in taking care of patients. But it has substance and trying and this out there slice of agenda is part and parcel what were trying to do. The cost benefit of that is so incredibly compelling because if you look again at ebola, by having a slow response that didnt have much in the way of therapeutic tools and vaccine tools ready the government had to spend 5 million to prepare on the home front and respond in west africa to this crisis. And that is an awful lot of money, and that is a very small amount of money compared to what it would what the nation would have to spend in the case of a true truly deadly pandemic that probably will emerge at some point. So this sort of Research Spending pales in comparison to what wed have to spend in a crisis scenario and helps to avert the crisis. You said it in the report succinctly, pay now or a lot more later. The pay a lot more later is not just the treasurers money but debts and morbidity and economic consequences that have huge implications. I want to respond to the point about the Research Consortium coalition. I dont see this as a research consortia. This is something different. This is been an this is been an integration of response and research. Its a different set of players. We havent done this before, not at the global level. So what makes a collaboration and network work is the same kinds of principles around how do you add value in looking at commonality of goals and the kind of things we talked about in terms of recognizing different interests and matching accountabilities. Once you start losing that, you lose the legitimacy, you lose the trust. You lose the ability to add value. So i think thats why were trying to be more explicit about what are the things that you really have to take care of, understand, and going in with your eyes open rather than just saying that while it will take care of itself or that you let industry do some things and well combat it on the other side with government. We really need a new type of approach and i think we go into it with our eyes open in looking for that, looking for the data around how do we add value. On this last point, you monatic h the w. H. O. System and the institution responsible for the entire chain you identified so clearly, we at least know who screwed up, right . Now what worries me with respect to the proposal is that your accountability ecosystem may not allow us to even know that. So im wondering i guess it would allow us to know that if the accountability part really works. So it looks to me as if what theyre proposing is a more inclusive system, one which involves multiple entities in a more peer to peer Network Arrangement but in peer to Peer Networks and Information Technology there are accountability systems that hold each peer accountable and im wondering what you have in mind. How actually would you have a Network System with accountability . I think its a question of balancing the accountability and making them explicit. I dont think the problem with having a single hierarchy is that we havent invested and dont have the capabilities to have both the capacity and to deal with the conflicts. Because there are inbuilt conflicts. You do not want the funder, the commissioner being the one telling you what the results are and doing the ethical clearance. Its just not you get confused messages and you get the wrong messages. And you get suspicion from outside. Exactly. And you lose that trust. Im not talking about a loose market, you know, with no restrictions on it. There needs to be real accountabilities for who is actually going to invest in developing the new product. Who is going to ensure against the financial loss. Who you do you make sure, do you actually track what happens to the profits who actually gets access to the new vaccines and drugs. Can you do that through a lot of transparency. It doesnt happen on its own so i think you do need to make if you have the set of functions, i would do it around, you know, responsibility for functions. You can still have w. H. O. And should still have w. H. O. Leading the International Call to arms and the response and activating the network in terms of the epidemic response. I think that thats clear. We havent nearly invested enough in making that work. But i think just by the way the International Health regulations there is a core responsibility for National Governments to do a lot and theyve failed terribly. So its not like there is ever a single responsibility. Its just that we need to be more creative and inclusive in terms of how we bring them together and what weve lacked is actually balancing independents. So by putting it all in one vote, that the same agent is the soccer player, the referee, the person in the stands and the commissioner and the ball. It doesnt work well. How much is the ball . So unfortunately, its time to wrap up. I want to thank all our participant with, all four of you, for coming and were glad to be able to help in the dissemination of this Important National academys report and we hope that actually pandemic preparedness is going to be a continuing priority for the international Global Health community and this administration here in washington, d. C. We think this report is points out some of the reasons why we need to prepare now, not wait for the next ebola epidemic and also gives us some pathways, some directions in which we can move and we need to do that fast. Thanks to all of you. [captioning performed by the national captioning institute] [captions Copyright National cable satellite corp. 2017] wrapping things up, you can find this and other live discussions weve had on cspan archived in our video library, to find this discussion search ebola at the top of the page on c span. Org. Well have a discussion about recent elections in venezuela and the ongoing conflict there. Several venezuelan democracy activists are in washington, d. C. And theyll be talking about what they see ahead live at 4 10 p. M. Eastern time. Hosted by the council of the americas. Well have that here on cspan as well. And join us tonight when townhall. Com Political Editor guy benson and other commentators debate the future of the republican and democratic parties. Its part of a World Affairs conference hosted by the university of colorado. Tonight at 8 00 p. M. Eastern here on cspan. And a look at one of the headlines in the Washington Examiner, john mccain follows through on threat to trump by adding afghanistan strategy to the defense bill. Senator mccain proposing an increase in u. S. Forces and the use of airpower in afghanistan, following through with a threat to the Trump Administration to force a new strategy after weeks of delays. The proposal is filed as a proposed amendment to the annual defense bill. It would increase troops for Counterterrorism Operations and calls for an openended agreement with afghanistan with an enduring u. S. Presence there. You can read more at Washington Examiner online. Join us tomorrow for more on the topic of troops in afghanistan with the black water founder eric prince. Hell discuss his proposal to outsource the war in which according to news reports the Trump Administration is considering a plan to privatize large portions of the u. S. Mission there, sending about 5,000 private military contractors to replace u. S. Troops. Well hear from eric prince of black water tomorrow on washington journal. The journal begins 7 00 a. M. Eastern and the discussion with erik prince at 7 30 with your phone calls and comments live here on cspan. Live coverage of the net roots nation 2017 Conference Friday and saturday on cspan. At 1 00 p. M. Eastern, a discussion on standing up for working families and embracing progressive values. At 2 30, a look at how to win back progressive power through organizing. Then at 4 00 p. M. , developing Vision Statements for the type of society progressives want to see. Saturday at 10 30 arm eastern, senator Elizabeth Warren and naacp ben jealous speak at the conference and later at 4 30 p. M. , former Vice President al gore and pamela chomba. Join us for a netroots conference on cspan. A panel of judges, journalists and former law clerks reviewed the most recent Supreme Court term looking at the effect of justice gore centurys appointment to the bench and what might be ahead for the high court hosted by the california Irvine School of law. Its about an hour and a half