A standing challenge for the ESC Program has been balancing our responsiveness to demands for ESC consultation in specific cases with the need to maintain an active program of empirical and conceptual research to help ensure that the insights and lessons learned through our consultations can be applied successfully to improve our understanding of cross-cutting ESC issues.
This tension should be anticipated by any new ESC program and addressed as a key aspect of the design and funding structure of the program. The evaluation of the impact of research ethics review and consultation is grossly underdeveloped  , . As ESC programs achieve greater integration with scientific program development and conduct, and gain more experience with the development and dissemination of model solutions to ESC challenges, it will become increasingly essential to develop the strategies and means to fairly and thoroughly evaluate the extent to which ESC problem-solving can improve the global health research enterprise.
As with many complex programs, however, there are few if any natural or obvious measures of impact or effectiveness. Traditional academic metrics like publications and citations are generally poor indicators of the real impact of global health research on, for example, the health of LMIC populations. Further complicating the assessment of ESC programs' attributable impact on global health is the fact that their greatest successes may be in preventing the undesirable—but not inevitable—from occurring.
Through trial and error, we have come to recognize that meaningful and rigorous evaluation of the impact of the ESC Program requires us to look beyond simple evaluation practices to embrace new methods for the evaluation of complex interventions . This paper is one product of this type of analysis. This, in effect, functions as a built-in evaluation mechanism. We continue to develop our evaluation practices and welcome dialogue and collaboration with other groups who are grappling with these same challenges.
Research ethics permeates the entirety of the modern scientific endeavor: institutions and researchers promote and protect scientific integrity, IRBs protect and promote the interests of human research subjects, and CSREs are increasingly called upon to address ethical issues that can present perplexing obstacles along the critical paths to the responsible realization of scientific and technological advances.
In no domain are scientific advances more needed than in global health. We hope, therefore, that in sharing these lessons above we can help ESC programs focused on global health to evolve, improve their practices, and gain prominence.
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Moreover, the importance of integration, of looking for broad applications of narrowly intended solutions, of bringing diverse perspectives to bear on complex ethical challenges, and of rigorous impact evaluation are by no means limited to global health; as such, we hope these lessons may also prove useful for CSREs focused on a wide range of scientific endeavors.
The authors thank Lauren Leahy and Kelsey Martin for their support and assistance in preparing the manuscript and Jocalyn Clark for helpful comments on earlier drafts. Summary The purpose of this paper is to encourage reflection among the global health research community and the research ethics community about how a wide range of ethical, social, and cultural ESC influences on the conduct, success, and impact of global health research can best be addressed by consultation services in research ethics CSRE. Build on Specific Cases to Identify and Propose Solutions to Cross-Cutting Issues Our experience has taught us to not only focus on discrete ESC issues specific to a particular project or program, but also to look for opportunities to devise potential solutions to challenges that cut across numerous research endeavors.
Fill gaps in regulation, governance, policies and guidelines:. Promote and facilitate responsible partnerships with the private sector:. Improve the Evaluation of Strategies, Activities, and Outcomes The evaluation of the impact of research ethics review and consultation is grossly underdeveloped  , .
Conclusions Research ethics permeates the entirety of the modern scientific endeavor: institutions and researchers promote and protect scientific integrity, IRBs protect and promote the interests of human research subjects, and CSREs are increasingly called upon to address ethical issues that can present perplexing obstacles along the critical paths to the responsible realization of scientific and technological advances. Privilege Southern perspectives. Build on specific cases to identify and propose solutions to cross-cutting issues.
Promote respect through effective and ethical community engagement. Fill gaps in regulation, governance, policies, and guidelines. Promote and facilitate responsible partnerships with the private sector. Evaluate strategies, activities, and outcomes. Acknowledgments The authors thank Lauren Leahy and Kelsey Martin for their support and assistance in preparing the manuscript and Jocalyn Clark for helpful comments on earlier drafts.
References 1. New York: Oxford University Press. N Engl J Med — View Article Google Scholar 3. Sci Transl Med 4: cm1.
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View Article Google Scholar 5. Accessed 8 July View Article Google Scholar 6. Bethesda, MD. Accessed 4 September Benatar SR Distributive justice and clinical trials in the third world. Theor Med Bioeth — View Article Google Scholar Burton B Proposed genetic database on Tongans opposed. Presidential Commission for the Study of Bioethical Issues Moral science: protecting participants in human subjects research.
Washington, DC. Accessed 13 July World Health Organization October 29 Guidance framework for testing of genetically modified mosquitoes. TDR news item. Available: www. Trends Parasitol — Editorial Letting the bugs out of the bag. Nature Brown J World Aff Despite these prevention efforts the residents continued drinking raw sap.
In this context of mistrust, it was difficult for the outbreak response team to communicate prevention messages based on the biomedical paradigm because, as in the NiV outbreak, the community understood the illness in quite different terms [ 14 ]. This paper describes the communication strategy we used that aimed to bridge the gap between the biomedical explanation of a highly fatal disease outbreak and the local interpretation of that illness.
Traditional health communication basically presents a Eurocentric paradigm of a biomedical model of health [ 16 ]. This approach promotes understanding and explaining health problems and outcomes from a top-down approach that is often ignorant of cultural context [ 17 ], specifically in response to inherent belief within a local context, which risks undermining the effectiveness of the intervention.
Health experts often describe the local perception of a disease in terms of existing spiritual beliefs and suggest that the affected population perceives the disease as originating from a supernatural cause [ 14 ] which limits their openness to scientific arguments. The logic behind these local explanations are not usually highlighted [ 18 , 19 ], but are important to understand to design a culturally credible, effective intervention.
In emergency situations affected communities are often distrustful of government agencies and personnel who communicate risk messages using traditional media outlets, such as radio, television or print media [ 20 — 22 ]. For example, in — during an Ebola hemorrhagic fever outbreak in Uganda and a previous NiV outbreak in Bangladesh local perceptions, beliefs and practices were not considered during initial communication initiatives and contributed to low acceptance or rejection of the biomedical recommendations for disease prevention [ 14 , 23 ].
Scholars of health communication engaged in an extensive discussion about the dominant paradigm of health; they discussed the importance of culture and urged incorporating the lay perceptions of cultural insiders in designing health communication [ 17 , 24 , 25 ]. The culture-centered approach is a bottom-up approach, explores the local meanings of a problem and how the cultural insiders of a target community interpret the risk of that problem [ 26 ].
This contextual understanding could inform practices related to disease transmission [ 27 ]. A culture-centered approach provides a platform to marginalized voices of the target community expressing their concerns and provides insights on how health decisions and meaning are negotiated within a given situation [ 28 ].
The goal of the health communicators in a culture-centered approach is to develop effective health messages that are responsive to the values and beliefs of the culture [ 26 ]. When addressing a health problem, health communicators need to understand these underlying cultural dimensions including the power dynamic and gender construction that are used to guide health intervention development [ 26 ] and could help to identify the inherent gaps, that need to be addressed in prevention initiatives [ 29 ].
However, health communication also needs to consider the possible limitation of lay knowledge on a specific issue which is new or not practiced in daily life [ 30 ]. Importantly, lay perceptions sometimes draw from a complex mixture and blending of biomedical knowledge, culture and livelihood experiences [ 29 ].
During outbreak investigations in Bangladesh, social scientists trained in anthropological approaches, initially explore local values, beliefs, social norms and care seeking practices related to the illness. Based on this contextual understanding, the outbreak investigation team further develops the messages and communication strategy to control the outbreak [ 15 ]. A defining characteristic of an acute high mortality infectious disease outbreak is the extremely short period available to develop a response. The difficult task for health communicators working as part of an outbreak response team [ 15 ] is to understand the gaps between the local knowledge and expert knowledge and to quickly develop a strategy that can effectively address these gaps [ 19 ].
Meeting the immediate health needs of the community may not always allow for thoroughly implementing all steps of an optimal approach, but rather requires streamlining practices using contextual understanding gained through the present and prior investigations in order to communicate relevant scientific information soon enough to be useful. Once the outbreak is over, for further or long-term prevention, it could ensure community engagement to frame a health problem and design for possible solutions. This paper illustrates this streamlining strategy we followed based on the contextual understanding during the short time frame in outbreak situation to communicate disease related information and prevention messages.
The residents had close social interactions; many of them were related through kinship. A team of three anthropologists and a sociologist conducted the anthropological investigation in January and February, during the outbreak. To make an initial connection with the residents, the outsider research team, who had different background with specialized education, needed to understand the societal context of the affected community.
Because there was panic among community members, the research team first strove to develop a strong rapport with residents of the outbreak community to permit the investigation and as a basis for communicating prevention messages. To build rapport, we greeted the residents as we entered villages and initiated conversations with whomever we met on the village path.
During our conversations, we listened to residents first and gave them an opportunity to express their views on the ongoing illness and hospital care, while we also responded to their queries. After basic rapport was established, we conducted an in-depth exploration of the outbreak and then communicated prevention messages.
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In this phase we collected information using several qualitative data collection tools. We conducted 10 informal discussions with community residents to understand the general perceptions of the disease outbreak and hospital care. Key informant interviews with two religious leaders and one religious scholar involved in ritual bathing of corpses of NiV case-patients and performing funeral ceremonies, allowed us to explore issues focused on funeral practices.
We also carried out eight in-depth interviews with family members and friends who primarily cared for the NiV-infected cases during different stages of illness at home and in the hospital and also accompanied the dead body home from the hospital. Through these interviews we gathered exposure histories of infected cases, perceptions about the disease and transmission, care-seeking practices and the rationale for seeking particular types of care.
Based on the interviews, we then recruited relatives and neighbours of the deceased cases who visited or cared for patients, performed ritual baths and funeral rites, and conducted four group discussions to cross-check their responses with those of other informants. We conducted all the interviews and group discussions in a private setting or in a place preferred by the informants or participants. The team took detailed hand written notes and audio record most of the interviews and group discussions. We arranged community group meetings to communicate information about NiV and how to prevent its transmission.
To encourage many people to participate, we made house-to-house visits, and explained that we would respond to their queries related to this outbreak in the meeting. We also asked a team of community volunteers convened by the local health authority to help us in inviting residents to attend the meetings through household visits and loudspeaker announcements. Community residents selected the venue and time for each meeting. We followed an interactive strategy for each meeting [ 31 , 32 ].
In the meeting, we communicated the following information sequentially using lay language, relevant examples, and photographs:. To describe the biomedical model of an illness, we first explained to the participants how NiV spreads after entering the human body, how it affects the nervous system and other organs, and the signs and symptoms that would develop [ 3 , 33 , 34 ] Fig.
We reminded participants using a local example about how cholera, an infectious disease familiar to the residents, was previously interpreted as a supernatural event before the invention and introduction of oral rehydration solution for treating cholera. People in the community at that time did not know how the germ pathogen caused cholera in humans. However, people now understand it as a contagious disease and with the invention and popular use of oral rehydration solution, incidence of cholera or patla paikhana- related deaths decreased dramatically.
We then described the brief history of the first identified NiV outbreak in Malaysia [ 35 , 36 ]. We showed the participants a map of Bangladesh and highlighted affected districts where previous NiV outbreaks occurred from to , listing the number of infected people and deaths [ 1 , 2 , 4 , 5 , 11 ]. After that, we showed infrared photos of bats drinking or licking raw sap from harvested date palm trees collected during research studies in Bangladesh, as well as showing bats trapped in the sap collection pot [ 13 ].
We explained that bats are the natural reservoir of this virus in Bangladesh and that bats could contaminate the raw date palm sap through their saliva and urine [ 1 , 10 , 11 , 13 , 37 ] Fig. Further, we explained that if people consumed this contaminated sap, they could be infected with NiV and develop encephalitic symptoms, such as fever and unconsciousness [ 3 ]. Using this causal explanation, we told them to avoid drinking raw date palm sap because it could be contaminated with NiV.
We then explained to the participants the typical care giving practices in Bangladesh, the potential risk of this behaviour, and how a person could be exposed to the respiratory secretions of an infected case [ 2 , 14 , 38 ]. Showing photos and pictorial cards, we described the four behaviour communication messages that could reduce risk of person-to-person transmission through contact with respiratory secretions: 1.
These messages were previously developed and piloted in a study with caregivers of patients hospitalized for pneumonia and meningo-encephalitis [ 39 , 40 ]. See flowchart for communicated information and messages in Fig. The meetings included a participatory question and answer session so that community residents could share their beliefs, perceptions, fears and concerns about the outbreak See Additional file 1 for frequently asked questions and responses.
Each of the four meetings lasted 90— min. We also recorded all the meeting. We used standard approaches for the analysis and interpretation of qualitative data [ 41 , 42 ]. We collected data in the native Bengali language. We expanded the notes for all the informal conversation, interviews and group discussions. In the time bound emergency situation, instead of doing verbatim transcription, we checked the audio records to fill in missing information.
We developed a coding system to capture the main themes and concepts, and then collated responses. We combined and compared the data gathered from informal discussion, interview and group discussion and summarized ideas that addressed important themes [ 42 ] using the multiple respondents and data sources to cross-check for validity and ultimately enrich the interpretation of our data [ 43 ].
For step 2, we also counted the number of male and female participants in each meeting. The notes taken in the community meetings were analyzed using the same process as the in-depth interviews and group discussions in step 1. Community residents had multiple explanations for the cause of the illness. They explained that supernatural causes related to the index case the first identified case of this outbreak and later close physical contact with the index case could have caused other people to become ill. The index case was a fisherman, who had been staying under a temporary shed beside a pond to catch fish three or four days prior to developing symptoms.
According to family and neighbours, one night the index case saw three people coming towards him from the pond with blazing eyes. He was frightened, fainted and developed a fever the following morning. Some villagers also reported that both the index case and his wife were sleeping under the shed on that night which they considered an inappropriate setting for a husband and wife to sleep because of lack of privacy and this might be the cause of bad spirit.
However, the wife denied this. As one villager said,. Staying overnight in an open place is not good for a husband and wife; it might be a reason for this frightened by the bad spirit incident…. This commonly shared story in the community spread fear that the illness was caused by a supernatural event related to the local fishing pond.
Families and neighbours of NiV-infected cases that our team attributed to person-to-person transmission believed that the effect of kharap athta bad spirit was the major cause of this illness. Some families of the deceased cases perceived that the illness could not be transmitted from one person to another and two caregivers reasoning that they consumed the leftover food of a NiV-infected case but did not get sick.
Families of NiV-infected cases and community residents did not believe the initial messages provided by the local health authority, which said that drinking raw date palm sap could be the cause of the illness.
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Residents argued that they had been consuming this raw sap over generations without any adverse outcome. Thus, after receiving the initial prevention messages most of them continued the consumption of raw date palm sap. Simultaneously, several residents were also suffering from non-NiV associated febrile illness [ 6 ].
When the families did not observe any improvement, all infected cases except the index case received treatment from private, licensed medical practitioners in their locality. In a deteriorating condition when the NiV cases began talking incoherently or lost consciousness, families of five among seven cases took them to the local sub-district and tertiary-level government hospitals where they received treatment. Multiple fatalities in a short period of time resulted in families being afraid and reluctant to take other cases to the hospital.
The seventh deceased case also received treatment from a private licensed medical practitioner and spiritual healers. This seventh case died at home; he became critically ill at night but the family did not consider taking him to the hospital because of transportation to the hospital was unavailable, and the previous five cases had not survived. Every community resident we interviewed believed that the tertiary medical college hospital doctors intentionally killed these patients. They stated that the doctors were aware of this fatal disease, and tried to isolate these patients who came from the affected villages.
Residents thought the doctors did not want the illness to spread within the hospital and into the wider community, so the doctors gave injections to the patients that killed them. One community resident whose son was suffering from a non-NiV febrile illness during our investigation and sought care from a private licensed medical practitioner explained,. I am not interested in seeking treatment from the medical college hospital at all. Although no new case was identified after the death of the seventh case, the residents believed that the outbreak had not stopped because of ongoing non-NiV febrile illnesses that were occurring in the villages.
They then called a religious healer who was the son of a religious leader in their village, but was living in Dhaka, the capital of Bangladesh. The healer told the villagers that an evil spirit had entered their villages and that this was the cause of the outbreak. By reciting Holy Quranic verses standing on the four corners of the villages, he assured the residents that he had driven away the spirit from the affected villages to other areas and from now the illness would stop affecting local people.
The villagers believed that by this process they become safe. After building rapport, residents commented positively on our interactive approach that encouraged their active participation in a meeting. The immediate response from community residents reflected the positive impression of our home visits and interactions. Consistent with other residents one commented,. They the outbreak response team came for our wellbeing.
They came repeatedly to our community, and have come to our homes and invited us for the meetings; instead of our wellbeing what other interest might they have? Around — residents among approximately 2, adult community population members participated in each of four meetings with the average ratio of males to females being During the community meetings, participants enquired that why did everyone who consume raw sap, not get the illness; why did only some of them affected; why it is happening now but not before they had been drinking raw date palm sap for years without any problems?
These queries reflected uncertainties around the biomedical explanation of disease transmission, and also provided an opportunity to bridge biomedical and local understanding. In response, we explained that not all the bats shed this virus, only some of them are infected. Additionally, we explained three possible reasons for which one could not develop any illness after drinking raw sap; first, perhaps no bat came to drink the sap of the tree which you drunk; second, even if bats came and drunk the sap, we were not sure whether they were shedding the virus; third, some people might not be susceptible.
See Additional file 1.
Furthermore, after receiving the explanation about the route of transmission of NiV from bats to humans, along with the local example about how the understanding of how cholera is spread had shifted from a supernatural event to a germ as the cause, participants made connections.
They reported that previous prevention messages had not convinced residents to stop drinking raw sap because they did not include information about bats being the source of this virus in the sap. Participants recalled that they had seen bats in and around the sap collection pot. In the meeting participants said,.
During the meeting, participants described the collection of fluids from the back cerebrospinal fluid of some patients and administration of injections, which they believed caused the deaths of all the cases admitted in the hospital. They reported that the doctors carried out both of these medical procedures without explaining to the families why patients needed these Additional file 1.
In response, we explained the necessity of cerebrospinal fluid collection from infected cases in order to identify the virus that may be infecting the brain, and the participants accepted it. While describing the four behaviour communication messages for preventing person-to-person transmission, referring to their prior query we explained that although many people may be exposed to an infected case, only a few of them may develop illness. In non-technical terms we replied that it might be due to differences in immune systems among humans or the strength of the virus or the level of exposure for which one might not develop illness after eating leftover food of a case patient.
To avoid this transmission risk, every caregiver should follow the behaviours we had suggested. Respondents accepted messages about person-to-person transmission; one participant said,. The patient may be my dear one but the disease is not. We have to follow what they researchers said to stay safe. As we engaged with community responding their queries, we provided culturally credible explanations for several issues that depicted the culture-centered nature of risk management strategies. During our conversation in the meeting, we did not tell the residents to stop drinking raw date palm sap, rather we acknowledged and appreciated the cultural importance of this food, and provided ways by boiling in which they could still enjoy date palm sap, but minimize the risk.
We also highlighted the economic reality of this cultural practice of date palm sap collection and uncertainty of refraining people from sap consumption even if it banned. When participants described a local method of using bana bamboo skirt, that covers both the tree trunk and the sap collection pot where sap is stored during collection , we explained that some of our researchers were testing the effectiveness of bana for safe sap collection and once they finish the research we could share the results.
We also did not tell the community to stop other cultural practices like ritual bathing of corpse, rather provided ways by covering mouth and washing hands-body with soap afterward that could minimize risk of transmission. Similarly, we explained why killing bats as some participants suggested to prevent NiV transmission would not be a good step since bats have ecological importance in pollination. See details in Additional file 1. During this sudden, fatal NiV outbreak, community residents blaming hospital doctors for patient deaths illustrated both the lack of community trust in the public healthcare system and the local interpretation of the illness.
Our study findings suggest that the practice of not explaining the disease and the treatment or unfamiliar diagnostic procedures in the hospital risks amplifying community mistrust of government health service in the context of failure of biomedical treatment. The power dynamic between doctors and patients may encourage this type of interaction. In the social hierarchy of the dominant culture [ 45 ], rural patients are not usually allowed to express their voice or ask any treatment related technical process to doctors, who hold much higher social status.
During this tense outbreak situation, developing rapport was crucial for building trust that could minimize the power distance between the affected residents and outsider research team or local health authority.
Lack of trust and little hope for patient survival prompted residents to avoid seeking government hospital care. A similar lack of trust was noted during previous Ebola epidemics in East Africa [ 23 ] or recent epidemics in West Africa which led affected patients to flee hospitals and hide cases [ 46 ].
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We used a combined effort to build rapport including participatory approaches, such as home visits, interviews, group discussions and engaging insider volunteer team. The culture-centered approach [ 28 ] we followed created a comfortable environment for the residents to express their perception of the illness with the outbreak response team.
During the emergency, there was a need to communicate certain expert information. The trust we built with the residents was also demonstrated by their active participation and responses in the community meetings. Later, when they found medical treatment failed to save their dear one lives, they asked perfectly logical questions about the biomedical explanations.
Their queries suggested that it is not simply spiritual beliefs that prevented people from understanding and believing science, rather uncertainties and failure of biomedical treatment contributed [ 19 ]. In developing countries, banning particular cultural practices is a common feature of health campaigns [ 48 ]. As the residents believed the transmission from person-to-person occurred from a sick person to another through direct body contact, not through any vehicle, such as secretions or saliva [ 50 ], our explanation persuaded them to accept germs as the cause of this disease and transmission.
In this short time frame, to design the intervention messages and strategy for this outbreak, we applied contextual learning from this outbreak as well as from the previous community based studies on NiV [ 14 , 15 ]. We deployed an abbreviated approach to understand the community perspective, an approach that may have limited the depth and nuance of knowledge that would have resulted from a full in-depth investigation.
Yet, we were able to provide insights that were available soon enough to be applicable to developing an emergency response. This approach could be applied in similar settings for responding to an emergency or outbreak situation. One limitation of our communication effort is that we were not able to follow-up on the uptake of these behaviour messages since residents were not caring for any NiV-infected case nor were any newly infected cases identified after our communication of the messages.
However, NiV surveillance staff reported that a patient from the affected community was admitted to the hospital as a suspected encephalitis patient immediately after the outbreak episode. During highly fatal outbreaks, instead of one-way communication, an interactive strategy communicated by a trained expert team, using lay language with supporting evidence, such as informative photos, can make the biomedical model of disease transmission and prevention messages credible to an affected community, even those who may initially invoke supernatural causal explanations.
Building rapport and trust with the residents of the affected community, is a prerequisite to understanding the local perception about the outbreak and a critical early step in the emergency response. Especially during an outbreak the central health authority should suggest that the local health authorities explain the necessity of treatment or diagnostic procedures to families while providing care.
This may help to avoid miscommunication and potential mistrust between the affected communities and health professionals. Our findings reinforce how a multidisciplinary team can work together to gain both biomedical and contextual understanding and to identify a culturally compelling prevention strategy during a crisis [ 24 , 51 , 52 ].
The communication team who delivers the messages needs to be technically skilled to understand the specific outbreak context in order to develop trust and identify dialogues that would be culturally credible to the affected community. Based on the local context, prevention messages need to be communicated during the outbreak using an interactive strategy with a logical causal explanation. Professional communicators or behavioural scientists may be better skilled than physicians for message delivery in such sensitive situations.
Considering the specific context, expert teams and the local health authorities could work together to communicate these messages with the help of local community leaders or activists, such as union chairmen or members, or social activists of the village. For recurrent outbreaks, such as NiV or Ebola, it would be useful to develop a set of communication materials a priori with participation of the local residents who have previous outbreak experience that could be deployed in future outbreak setting.
Furthermore, follow-up assessments are needed to evaluate the effectiveness of this communication method. Nipah virus encephalitis reemergence, Bangladesh. Emerg Infect Dis. Person-to-person transmission of nipah virus in a Bangladeshi community. Clinical presentation of nipah virus infection in Bangladesh. Clin Infect Dis. Nipah virus outbreak with person-to-person transmission in a district of Bangladesh,