This paper describes a place-based initiative, GO! Austin/VAMOS! Austin (GAVA), which was designed to harness the strengths of place-based work—namely, its specificity to place and community. From the start, the project was designed to balance this specificity with a focus on developing and utilizing a standardized set of evidence-informed implementation and evaluation approaches and tools that were flexible enough to be modified for specific settings. This was accompanied by an emphasis on leadership and capacity building within resident leaders, which provided for informed intervention and demand building capacity, but also for longevity as partners, philanthropic, and otherwise, moved in and out of the work.Place-based health efforts account for the role of the community environment in shaping decisions and circumstances that affect population well-being. Such efforts, rooted as they are in the theory that health is socially determined, mobilize resources for health promotion that are not typically used, and offer a more informed and robust way of promoting health outcomes within a community. Common criticisms of place-based work include the difficulty of  GO! Austin/VAMOS! Austin (GAVA) is a place-based, cross-sector initiative to improve the health of residents living in South Austin through improved access to healthy food and safe physical activity. GAVA was launched in 2012 by the Michael & Susan Dell Foundation in partnership with community organizations, schools, and residents. Implementation efforts began in the South Austin zip code of 78744 (Dove Springs) and expanded to the neighboring zip code of 78745 2 years later.viz.:•Increase access to built environment assets, such as parks and healthy food, and couple these with demand building strategies, in order to influence healthy behavior changes , 7.•Facilitate residents’ capacity to lead these efforts to increase relevancy, community ownership, and community use of such infrastructure –10.Although Austin is considered one of the healthiest cities in America, zip codes 78744 and 78745 face systemic issues that pose barriers to healthy living. They are the most populous zip codes in the city, but lack basic amenities. Parks in both zip codes lack basic features such as playscapes, water fountains, park benches, and have gone years without sufficient lighting to keep the neighborhoods safe. Fifty percent of adults in the community and 80% of the children in area elementary schools are overweight or obese . In 2012GO! Austin/VAMOS! Austin was designed as a model for sustainable community change that could be translated to other communities in need. The sustainability strategy focused on coalition building , 12, botIn identifying potential sites for the GAVA partnership, the aim from the beginning was to capture information that would not just illustrate the needs of the neighborhood, but also its assets . Need wasupporting the intervention to address these needs  that would be critical in se needs , 14. To Funding coming into the zip code from other sources was identified as a priority asset that would help sustain intervention activity. It was clear that larger, more durable infrastructure investments requiring an array of public partnerships and funding were outside the capacity of GAVA to deliver as part of the initial intervention. The City of Austin was queried to determine priority sites for infrastructure projects, and what they had observed with regard to community characteristics that would maximize potential success, such as community cohesion, and leaders who were able to successfully engage with the city.This neighborhood analysis resulted in the foundation narrowing the focus to two specific zip codes to invest in. With a population of about 43,000, the 78744 zip code had the highest obesity prevalence at close to 30% among middle school children [the national average is 17% ] and alsThe analysis also revealed significant need and capacity in the neighboring community of 78745, but with a few notable differences from 78744. With a population of about 55,000, 78745 had a slightly higher median income than 78744 ($43K versus $38K) and fewer children on free and reduced lunch (82 versus 92%). The community also had a slightly lower obesity prevalence among students (26 versus 29% of middle school students) . What waHowever, differences across these communities were of smaller magnitude than the commonalities. Both communities had significantly higher poverty and obesity prevalence than the national average. Significant mobility had been documented in both these communities. Choosing two, especially geographically contiguous communities across Austin’s I-35 corridor, created the opportunity for zip code-based efforts and messaging to reinforce each other, with the recognition that a mix of engagement models that made the most of foundation staff and funding capacity would be needed.Trust was a vital component to launching the work and remains a critical component to continuing efforts. Particularly, in Dove Springs, the community had been selected for a wide array of previous assessments and interventions. Residents were used to being in studies, asked their opinions, and then left to wonder what happened as researchers wrote a thesis or a needs assessment and moved on. This made many key stakeholders wary of a new partnership.The foundation was, from the beginning, transparent about what was in scope of the initiative and what wasn’t. Dove Springs had a number of community priorities beyond those considered in scope. These included health-care access, affordable housing, economic development, and others. While there was tremendous interest in hearing all the barriers to wellness, only some would be addressed directly, and residents would need to be connected to partners for others. The foundation was prepared to listen and to show evidence that residents were being heard. When resident leaders were approached with a plan for engagement following the neighborhood analysis, they signaled dissatisfaction with the organizations selected to lead the work, primarily because these organizations were not located in the neighborhood and did not have an established relationship with the residents. A 1-h meeting scheduled to share the implementation plan turned into a 4-h meeting to devise a new one. The foundation continued this strategy—responding to resident input with changes that reflected feedback, even if it meant significant changes in the way the foundation did work internally to accommodate what residents thought would work in the field, and built in mutual accountability for results.Efforts were also directed toward building trust with the entities that were already known and familiar to the community. Knowing that it would take significant time to build trust within the neighborhood, particularly given the long history of failed relationships with interventionists, evaluators, academicians, and others, the foundation worked to gain the trust of trusted entities. It was not an easy path, but it was a clear one, with non-negotiables and a strong desire to approach the work as equals.•Coalition—a group of community decision makers who represent the various sectors, community based and service organizations, and residents and leaders of the community. Coalition meetings are attended by institutional partners, funded implementation partners, local policy makers, and most importantly, residents in the community. The agenda of the coalition meetings is centered around providing updates of progress made on GAVA goals using data and maps, identifying priority areas of work based on resident feedback, and providing for capacity building opportunities such as leadership training.•Advisory Council—to guide the coalition’s decision-making and maintain accountability to the partner communities, the GAVA coalition created an Advisory Council, comprised of director-level representatives from partnership organizations, and leaders from the resident-stakeholder teams. A simple majority of residents and community stakeholders is maintained on the Advisory Council; votes are taken to endorse various decisions that affect the coalition.•Executive Director—the director functions as the key strategist to lead the work within the neighborhoods . This keBecause GAVA is a coalition-based initiative and not an independent 501(c)3 organization, there is no board of directors. The leadership structure of the initiative has been created to allow the space for resident leadership and organizational partnership and guidance. It consists of the following core components:The specificity and thus the limited generalizability, of place-based interventions has generally been accepted as given in the field of health promotion . Yet, itOne of the first decisions regarding the organization of GAVA activities was that it would follow a sector-based framework for delivery , 20. FivThe sectoral implementation strategy, while guided by local needs and the availability of local resources to address these sectors, is easy to adapt to other settings. It has the advantages of being relatively modular, so that the implementation strategy mix within each sector is complimentary and coordinated with but not entirely dependent upon the activities in other sectors. Further, it leverages different community strengths and funding resources as and when these become available .A menu or master list of evidence-based strategies and tools was developed to identify the implementation strategies to be implemented by GAVA teams in each of the sectors. This menu was initially developed by conducting an extensive literature search for evidence-based strategies for each sector , and infOrganizing the implementation through teams in each sector kept the funding mechanisms and initial workplans streamlined, because we had subject matter experts in the form of community-based nonprofit partners in each sector. However, when 78745 became active, one of these partners, an affordable housing nonprofit, provided an opportunity to engage resident teams in multi-sector efforts that affected their own family and immediate community . This neA key goal of evaluating strategies was that results from evaluation be available and transparent to residents and stakeholders at all times, so as to usefully inform the direction of their implementation efforts. This required then that evaluation be an ongoing activity, rather than a one-time exercise at the end of the intervention. This applies to impact evaluation, but even more to process evaluation , which csustainability, access, and utilization  study that collects data from approximately 300 individuals living in the GAVA communities each year. The D2D participants self-report many of the same constructs as the cohort participants, but is limited to adult data. Addresses of both cohort and D2D participants are obtained and geocoded, to allow examination of place-based intervention effects. In addition to these two quantitative studies, the evaluation team conducts yearly interviews with school principals  and with key stakeholders and community residents (the community readiness sub-study). Finally, the evaluation team conducts observations of community assets to determine changes in quality of these assets over the evaluation period.Data from the cohort and D2D surveys are compiled annually and summarized as feedback for implementation team, both to allow monitoring of progress, as well as to provide information that serves to redirect resources to areas of high need or low impact, identify specific actions to strengthen fidelity of implementation and address access and quality gaps with regard to healthy food and physical activity. Figure via key wins around infrastructure improvements, policy, and funding changes and programming .GO! Austin/VAMOS! Austin is now in year 5 of a planned five-year implementation in the first zip code, and year 4 of implementation in our second. At this time, the GAVA coalition is comprised of six funded non-profit/city agencies, over 122 organizations, and over a thousand residents. Of the 98,420 individuals living in both zip codes, 86%  have geographic access (living within a one-mile radius) to GAVA assets. Over 1,600 residents have been mobilized as part of GAVA outreach efforts, and over 800 residents are active leaders in GAVA implementation across both zip codes. Currently, 35 implementation teams comprised of residents, community leaders, and institutional staff are focused on park and creek adoption, coordinated school health, early childhood, and increased access to healthy foods and local produce. Over the course of 3 years, resident led teams made improvements to more than 32 community assets In areas with high residential leadership, key wins include a 30% reduction in perceptions of barriers to physical activity. Reduction in access barriers are geographically correlated with increased usage of the neighborhood assets, and improvements in physical activity utilization behaviors by 20%. Similarly, mobilization of resident activity around awareness building and outreach is correlated with a 20% increased awareness of barriers to healthy food access. Positive trends in nutrition have also been observed with increased utilization of local food retail outlets.Last year, the foundation funded the work at 50% of operational costs, this year at 33%, and next year at 33% in only the second neighborhood launched. This trajectory has required identification of supportive funding from private and public sources for operational activities. Additionally, organizations that participate in GAVA and see the increased value in having engaged client advocates have pledged to support key staff who benefit their organization and GAVA overall, through current or raised operational funds. The GAVA implementation team is now spinning off independently as an organization to best maintain and deepen core operational functions while serving as partners to other institutions and initiatives in the execution of community agendas for population health.Given the way GAVA is organized, the tools used to monitor process and gaps, and the measurement that has been put in place, there are strong indications as to what structures and strategies are working and can be replicated. The building of partnerships and networks far outstretch the geography of the current implementing neighborhoods and further support an effort aimed at replication with fidelity. We are also considering a broader set of social determinants to begin addressing in more established GAVA neighborhoods with the capacity and will to do so.The GAVA team has often been asked whether funding resident leadership, or capacity building within people, is actually sustainable. Indeed, GAVA makes the case that the investment in people is the key to sustaining these efforts. GAVA communities are among the most mobile of Austin residents—GAVA works because it does not depend on a small cadre of leaders. Rather, capacity building within residents, and progression through a pipeline of leadership, has ensured that residents can flow in and out of a broad swath of resident activists as their circumstances dictate, though their collective efforts and relationships formed therein, provide a great incentive for them to stay in the community long-term.GO! Austin/VAMOS! Austin has learned how to be more flexible as new realities and realizations emerge. In more recent years of GAVA, the most important change is the formal incorporation of community organizing into the model and staffing. Organizers—many of whom live in the zip codes of focus—exist both at the geographic level, working with site-based teams, and across sites at the sector level—setting aside the subject matter leads for coordinated school health, early childhood, and physical activity efforts, and leading food retail efforts. Responsible for resident engagement and leadership building within their designated scope, it is these organizers and the Executive Director who provide much of the leadership, outreach, and sense check of what will work. They are the connection between the power of evidence and the reality of lived experience by those most directly impacted.AH, CP, SB, and NR can confirm that they are authors of the mentioned manuscript, and that their authorship consisted of the following: substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; and drafting the work or revising it critically for important intellectual content; and final approval of the version to be published; and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer MHF and the handling Editor declared their shared affiliation.


Despite several periods of stagnating guinea worm disease (GWD) incidence in Ghana during its national eradication campaign in the 1990s and early 2000s, the last reported case of GWD was in May 2010. In July 2011, Ghana celebrated the interruption of guinea worm (GW) transmission. Although it has been established that GWD causes disability, pain, and socioeconomic hardship, there is a dearth of population-based evidence collected in post-GW–endemic countries to document the value attributed to GWD eradication by residents in formerly endemic communities. Given Ghana’s recent history of GWD and a concentrated burden of the disease in its Northern Region, a pattern which remained true through to the final stage of the eradication campaign, seven villages in the Northern Region were targeted for a retrospective, cross-sectional study to detail the perceptions, attitudes, and beliefs about the impact of eradication of GWD in northern Ghana. The study revealed that respondents from the sampled communities felt GW eradication improved their socioeconomic conditions, as the impact of infection prohibited the pursuit of individual and social advancement. The value residents placed on the absence of GWD highlights both the impact infection had on the pursuit of social and economic advancement and the newfound ability to be disease-free and productive. Of the 143 respondents, 133 had GWD in the past and were incapacitated for an average of 6 weeks annually per GW infection, with each infected person affected nearly four times in his or her lifetime. Dracunculus medinensis, commonly referred to as guinea worm (GW), is a nematode parasite that typically affects only human beings.2 Also known as the fiery serpent because of the generalized burning sensation one feels when the worm is about to emerge, GW is referenced in the bible and has been recovered from mummies in Ancient Egypt nearly 3,000 years old.1 The genesis of the idea to eradicate guinea worm disease (GWD) had its origin at the Centers for Disease Control and Prevention in 1980 following the success of the smallpox eradication campaign.34 The next year the program detected 179,556 cases of GWD.4 This was the second highest recorded incidence of GWD only in Nigeria.5 Most of the cases were found in the Northern Region, a pattern which remained true until the end of the campaign.6 Nearly all of the socioeconomic and health indicators in the Northern Region ranked between eighth and 10th of the 10 regions and thus lower than the national average.7 Residents of the Northern Region are primarily subsistence farmers and practice small-scale animal husbandry. The region experienced repeated internal conflicts throughout the mid-1990s, including the highly referenced “Guinea Fowl War,” which led to an exodus of health workers, including U.S. Peace Corps volunteers, and a reduction in the provision of health services, including interventions to eradicate GWD.9 These challenges, together with a long dry season (November–April), difficulties in extracting safe drinking water from underground sources, and the creation of large impoundments to provide water for farmers and their livestock and also for humans, provided suitable conditions for the transmission of GW.10In 1986, former U.S. President Jimmy Carter agreed to become the lead advocate for eradication of GWD and for the Carter Center to provide technical and financial assistance to countries with endemic GWD, including Ghana. The Carter Center efforts to assist Ghana with its national effort to eliminate transmission of GWD in Ghana were fully supported by the then President, Flight Lieutenant Jerry Rawlings, who inaugurated the Ghana Guinea Worm Eradication Program (GGWEP) in 1988.6 Having successfully observed 14 months of zero case reports in the presence of an active village-based surveillance system, Ghana celebrated the interruption of transmission in July 2011.11 Following 3 years of zero case reports, the GGWEP submitted a comprehensive country report on the history of GWD in the country, including the eradication campaign, to the International Commission for the Certification of Dracunculiasis Eradication (ICCDE) requesting approval to be certified free of GWD. In July 2014, the ICCDE sent an independent International Certification Team (ICT) to verify Ghana’s claim of having interrupted transmission and, following verification by the ICT, recommended Ghana be certified free of GWD. In January 2015, Ghana was granted certification by the World Health Organization.12Ghana’s last reported case of GWD was in May 2010.15 Although myriad research has been conducted on GW’s biology, life cycle, and epidemiology since the late 1800s, there is no population-based evidence documenting the value attributed to GWD eradication by residents in endemic communities, either in a pre- or post-eradication environment.22 This study was designed to understand the attitudes and perceptions of Ghanaians after the eradication of GWD to capture the voices of those affected by the disease.Formative literature about the culture and people of the Northern Region, including perceptions about western medicine and several studies elaborating the financial impact of GWD in Ghana and Nigeria, exist.23 Before implementation, a pilot test of the survey instrument was conducted in Tamale town, capital of the Northern Region. The sample represented the same demographic targeted in the study, and the pilot test confirmed the reliability and validity of the survey tools. In addition, the pilot test provided insight into the logistical planning necessary to complete the study.The study was retrospective and cross-sectional as it detailed perceptions, attitudes, and beliefs about the impact of eradication of GWD in northern Ghana. Because of the dearth of literature about attitudes toward GWD in northern Ghana, house-to-house surveys and focus group discussions (FGDs) were conducted. Furthermore, the investigators used a concurrent study strategy so that the survey tools captured relevant demographic data and detailed direct and indirect experiences with GWD simultaneously.Because of the historically high incidence of GWD in the Northern Region and the occurrence of GWD in peri-urban settings, the study targeted both urban and rural communities to generate an understanding of perceptions in both environments. The peri-urban towns of Savelugu, Diare, and Fufulso Junction were surveyed in addition to the more remote villages of Gburimani, Wantugu, Issape, and Gushie. The communities were all in the Northern Region and represented both the Dagomba and Gonja ethnic groups, the two ethnic groups most heavily affected by GWD in Ghana .The study targeted a minimum of 30 household interviews and five FDGs in each of the three towns . In the four smaller communities , a minimum of 5–20 interviews and two to three focus groups were targeted. In the communities where schools were present, at least one FGD was targeted in a school setting.A staff member of the Ghana Health Service provided translation to and from English into Dagbani and Gonja for the interviews. A handheld tablet was used to collect the quantitative data and paper questionnaires were used to record responses to open-ended questions. To ensure the accuracy of the transcription, interviews were also recorded and transcribed daily.Households were selected randomly. In each household, the head of the household (or representative) was selected to be interviewed and was read the verbal consent form to ensure the respondent was adequately informed of the nature and substance of the interview. If consent was provided, the investigator further inquired if the interview could be digitally recorded. On approval, a private location was identified to ensure privacy and prevent potential bias from bystanders. After completing the first interview, a second interview was conducted with another member of the same household.After surveying the household, the investigator spun a bottle to identify the next household. To minimize the clustering of households, the interval between houses was determined based on the size of the village. In smaller villages (< 500 population), the first house in the direction of the bottle was visited. In large peri-urban settings , the third house in the direction of the bottle was selected until the prescribed number of sample houses was met. In villages with populations between 500 and 4,000, 5–20 household interviews were conducted  and in lIn addition to household interviews, FGDs were conducted to ensure that perceptions across demographic groups were obtained. Study criteria included selection across three age groups , principal occupation , both genders, and, where available, students. Focus groups were organized with students at schools and with adults at social and market gathering sites. During group discussions, the investigator ascribed comments by gender and approximate age of the respondent to simplify the summation of responses. At least three focus groups were held in each village .24 Permission to conduct and record interviews was obtained from all respondents. According to local regulations, the headmaster provided consent to discuss GWD in schools; however, general consent among the students was requested and anyone electing not to participate was not obligated to do so.The investigator met with district health officials and community chiefs to satisfy community entry protocol and was consistent in the administration of each question to preserve the integrity of the survey and ensure consistency throughout implementation.The Ghana Ministry of Health approved the study as operational research and, thus, required no further review. Before the study’s implementation, the project proposal and study tools were submitted to the Emory University Institutional Review Board (IRB) for review. The IRB determined that the study did not require review. All respondents provided verbal or written informed consent before being interviewed.In October 2013, a total of 143 head of household interviews were conducted in six of the seven targeted towns and villages. Issape, in the Central Gonja district, could not be visited because of inaccessibility caused by flooding after heavy rains. In addition, 18 FGDs were conducted involving 400 residents across all age groups, including two schools in Tamale town.Of the individual respondents, 74 were male and 69 were female, with generally equitable distribution across the 16–25, 26–50, and 51+ years age groups . Farming21Of the 143 respondents, 133 (93%) claimed to have experienced GWD at least once in their lifetime. On average, respondents had nearly four GW events  and seven worms in their lifetime . Ninety-All 143 household respondents indicated that the absence of GWD had changed their life, both individually and as a community. Results from open-ended questions about how and in what ways the absence of GWD impacted their lives individually revealed that between 75% and 88% of respondents believed health and work  improved significantly . RespondIndividual interviews were triangulated with 18 FGDs (including six school focus groups). The primary themes identified during discussions among nearly 400 focus group participants were consistent with those of the individual interviews and included health, work, economics, and school performance, signaling saturation was likely achieved during individual interviews. More than 90% of the focus groups identified work as the primary activity impacted by GWD and referenced the impact as being more significant at the community level. Overall, 99.8% of respondents (542/543) expressed that GWD had a negative impact on their lives and that they had experienced improvement in their livelihood post-GW eradication. Focus Group no. 12 shared that their “children can now become professional football players and learn freely,” reflecting their perception that a future without GW was more hopeful.The methodology applied in the study was limited in several ways. Recall bias was a primary limitation, given the average 12-year gap between 2013 and respondents’ most recent infection with GW. This potentially skewed the study’s findings by over- or understating the perceived changes post-GW eradication. In addition, courtesy bias and a perception that new community programs would be provided if respondents spoke positively of the GWEP may have influenced responses. The themes addressed by respondents were sincere as they were consistent with the impact and effects associated with a physically incapacitating disease. Respondents provided accounts of their experience with GW, but there is no baseline data to compare their perceptions before the eradication of GW. Despite improved macroeconomic conditions in Ghana during the past decade, which could have also influenced respondents’ general perceptions, most respondents focused on the direct impact on their physical inputs and day-to-day life activities.Although interruption of GWD transmission nationwide in Ghana satisfies the definition of a public health success, this study provides an account of how the eradication of GWD was perceived in northern Ghana. This survey is the first known attempt to collect population-based evidence from residents of affected communities in a country formerly affected by endemic GWD to document residents’ perception of value attributed to GWD eradication.20 The study also showed that the duration of incapacitation was longer for people older than 25 years of age, with males > 51 years and older experiencing more than five GW events and incapacitation for 9 weeks (15 A United Nations Children’s Fund (UNICEF)-supported study in Nigeria estimated that about US $20 million was lost annually in rice production alone.25 Furthermore, as identified by other researchers, children also missed school either because they were incapacitated by the disease or as a consequence of replacing sick relatives in agricultural activities.26 Nearly all respondents specifically mentioned that GWD resulted in lost crop production, a loss of dignity, and economic and social hardship not only in the last decade but also as far back as their oral histories could recount.The study showed that 97% of the respondents were incapacitated during the agricultural season and were unable to carry out their normal chores (laboring to produce food for their families) for an average of 6 weeks during each GW emergence event. This is also consistent with the 6–15 weeks of incapacitation reported in previous studies. 9 weeks . This reThe study sample did not allow the comparison of results between the Dagomba and Gonja ethnic groups, two groups heavily affected by GWD in Ghana, as the targeted communities were in Dagomba cultural areas. However, based on the available sample of Gonja respondents, there was no indication that they perceived the absence of GWD differently than the Dagomba.14 though the study did not address how the existence or absence of GW would impact their lives. As public health programs proceed through their own life cycle, the responsibility to remain focused on the beneficiaries does not subside. This requires following up with beneficiaries even after the supposed success of the program to reinforce the value of the lessons learned during the program.The anticipated benefits of a successful GWEP are widely understood. However, little attention has been given to how local populations perceive the disease. One study in northern Ghana, among the Anufo ethnic group, looked at disease classification in terms of how GW was ranked against other more virulent diseases,7 Apart from what the GGWEP did to garner support for safe water development from partners, including UNICEF, the European Union, the Conrad N. Hilton Foundation, and Rotary International to name a few, direct government investment was meager until near the end of the program. The failure to improve the standard of living across the country has required the investment of millions of dollars to deal with GWD and other neglected tropical diseases (NTDs) that might have otherwise been unnecessary.Since the beginning of the GGWEP, the endemic regions of Ghana have not benefitted from significant infrastructural development.27 The documentation of an insider’s view of what eradication of GWD has meant to the people of Ghana may help policymakers and funders uphold commitments outlined in the London Declaration on NTDs.28Although this study highlights Ghanaians’ perceptions about GWD eradication, additional studies should consider evaluating the impact of the indirect benefits, such as the provision of safe water and health education that formerly endemic communities received as a result of the GGWEP in formerly GW endemic areas. The GGWEP, in particular, was able to garner substantial investment toward the provision of safe water in endemic areas, yet the level of development has been slow and uneven. Public health economists have reconfirmed the cost-benefit of pursuing eradication of GWD but more should be done to determine which programmatic elements have led to the cost-effectiveness.As the final chapter of the global GW eradication campaign nears, the importance of understanding the perceived value of the absence of the disease among previously affected residents cannot be overstated. Thankfully, GW will become a forgotten disease, but the lessons for public health remain profound. Documenting the value of removing a disease or problem, in quantitative and qualitative terms, will help future public health programs plan interventions with new insight into the very population targeted. There is no final public health program, and each must learn from those that have come and gone before it, just as the GWEP was born out of the success of the smallpox eradication campaign, so too another will come after GW is gone.


Child and youth injury prevention research in Canada has lagged behind other Organisation for Economic Co-operation and Development nations, despite existing surveillance systems and longitudinal data. A critical need to improve access to the available data, as well as need to tailor its display and interpretation, was identified by injury prevention stakeholders involved in research, policy, and practice. The Canadian Atlas of Child and Youth Injury Prevention (“the Atlas”) was developed to address this need. Following a series of iterative consultation meetings and a pilot testing session, the Atlas was scaled up with national data. Two testing sessions were held to evaluate the tools. The Atlas is comprised of three main components: data, indicators, and visualizations. The accessibility of the dashboard is enhanced by customization of data visualizations and data outputs to suit the user’s needs. Overall feedback indicated that the tools were easy to use, and that the interface was intuitive and visually appealing. The Canadian Atlas of Child and Youth Injury Prevention provides readily accessible information to injury prevention practitioners, policy makers and researchers, helping to chart pathways to success in improving the child and youth injury prevention system in Canada. Injury is the leading cause of death in Canada among those aged 1–44 years and claims the lives of more children <19 years of age than any other cause ,3 and inInjury prevention practitioners, policy makers, and researchers indicated that child and youth injury data in Canada was difficult to access, therefore they did not have what they needed to make decisions. Better access to data was needed—despite the existence of robust surveillance systems in Canada, with injury data available through data stewards such as Statistics Canada, the Drowning Prevention Research Centre, Canadian Injury Reporting and Prevention Program (CHIRPP), and the Canadian Institutes of Health Information (CIHI), among others . Bringinwww.injuryevidence.ca) to answer this need, providing readily accessible information to injury prevention practitioners, policy makers, and researchers. The Atlas and dashboard is a unique resource and a first of its kind, serving as a model for other jurisdictions. The dashboard draws from multiple national data sources, provides a basis for decision-making and action, and to help chart pathways to success in improving the child and youth injury prevention system in Canada. Realizing the vision of the Atlas required the coordinated efforts of a multidisciplinary team over a period of six years; this paper serves to document that process and provide a comprehensive overview of the development, creation, testing, application, and dissemination of the final product, as well as evaluation from the standpoint of end-users.The CIHR Team in Child and Youth Injury Prevention developed the Canadian Atlas of Child and Youth Injury Prevention , indicators are defined within detailed text pages, and the visualizations are generated with Tableau software . The iDOT and dashboard both draw on the same datasets, but display the information in different formats, depending on the type of problem the user is attempting to solve. The accessibility of the dashboard is enhanced by customization of data visualizations and data outputs to suit the user’s needs. A series of iterative national consultation meetings were held to foster excellence in communication and encourage engagement through the development of a Canadian Child and Youth Injury Prevention Atlas and dashboard.The Atlas is comprised of three main components: data, indicators, and visualizations. Data tables are generated within the Interactive Data Online Tool  assembling the operational requirements for the dashboard through input on what is meaningful to researchers, practitioners, and policy makers; and 2) populating the child and youth injury indicators with BC data as a proof of concept, before scaling up to the national level. This information was solicited through a series of presentations and discussions with key informant groups across Canada, and included feedback from over 100 potential dashboard users from research, policy, and practice organizations. Mock-up dashboard presentations and simulated working demonstrations were presented, coupled with directed questions regarding: the visual appeal and specific features of the dashboard; the utility of the indicator information; and the perceived functionality as a tool balancing utility, ease of use, and visual interest  populati,7,8,9,10The pilot interactive dashboard mock-up was built using Tableau software. The basic look and feel of the dashboard was incorporated into a working model using available BC hospital surveillance data (from the CHIRPP database) to understand the user experience and gather feedback. Advanced visualization techniques and interactive design principles were applied to design the Interactive Injury Dashboard according to pre-received user feedback based upon dashboard mock-ups. Multiple coordinated visualizations with embedded interaction capabilities, drill down and filtering techniques were integrated to help users easily retrieve injury data at multiple levels of abstractions. Throughout the project, the dashboard was discussed with the project team and modifications to specific visualizations were made to improve usefulness and understanding.A meeting was held to demonstrate the pilot dashboard to eight identified injury prevention researchers and practitioners by having them interact with the dashboard as individuals and as part of a group. Participants were also asked to complete a questionnaire to solicit their feedback on the usefulness of the interactive injury dashboard and its potential to help stakeholders generate insights, build knowledge, and support their decision-making process. Methods and results of this testing session are reported elsewhere ,15.iDOT included hospitalization and mortality data, drowning data, transportation data, and economic burden data [iDOT. The dashboard visualizations on the other hand, were converted into text labels for programming into Tableau.Following the BC pilot demonstration, the Atlas was scaled up with national data. The datasets that are included in both the dashboard and den data . These dThe mortality and hospitalization data required cleaning and preparation. This process included checking for missing data and information, coding external causes using the ICD 10 code breakdown, and creating categories by year, sex, age-group, cause, sub-cause, place of occurrence, type of injury, and body type injured. The hospitalization data included further data preparation for conversion by health region as well as coding by residential region and treating facility.The drowning data was prepared by creating additional variables by region, safety device, and legal blood alcohol limits, as defined by the applicable provincial laws.A more comprehensive approach was used for the transportation data, as each dataset received from the provinces was in a different format. Some data dictionaries matched while others were different. A consistent and standard data dictionary was developed based on common variables. Throughout the process, a highly qualified data coder with a diploma in health information management worked closely with the data team manager and programmer to optimize the coding system, ensuring accurate retrieval of data using other fields and free text in the database.Each tool and visualization underwent a thorough testing process where data was verified using the original datasets. The tool was also sent to the data source organizations for testing, if they so requested. Different injury related scenarios were used to test the tool in its entirety.A small group of key informant users tested the Atlas to provide feedback prior to “going live”. The key informants were injury prevention practitioners and policy makers representing national and provincial injury prevention organizations. Two consecutive testing periods during July and August 2015 involved seven participants each. Each user was individually oriented to the tool by a visual analytics expert, either in person or via a web-sharing platform, then they were presented with three scenarios to solve using the Atlas and given as much time as they needed to explore the tools .Box 1You are being asked to present at a meeting on the trends in Canada for suicide and homicide for 10–19 year olds from 2007–2010.You are preparing a briefing note for the Ministry  regarding child pedestrian safety. What are your concerns? Be ready to provide evidence to support your stance.A colleague has told you about a Potential Years of Life Lost visualization she saw on the Atlas/dashboard. How would you imagine using this in your work?Take the next 5 min to explore the site. What is a typical thing that you would be asked to do as part of your daily work? Could this site help you with it?Learnability—how easy is it for new users to perform the task?Intuitiveness—how obvious and easy is the task to accomplish?Efficiency—are users performing the tasks optimally? Are there ways to streamline and reduce the time it takes to complete the task?Preciseness—how prone to errors is the task?Fault tolerance—if a user makes a mistake while performing the task, how fast can he/she recover?Memorability—how easy is the task to repeat?Affordance—are interactive elements, such as buttons/links/input text boxes, related to the accomplishment of a task obviously interactive and within convenient reach?On completion of the testing session, each user was interviewed. Users were asked to provide feedback on each component of the tool , as well as their specific feedback about ease of navigation and architecture of the site, and overall experience using the Atlas. User feedback was grouped and examined across seven dimensions:Lastly, any specific problems relating to the structure and presentation of the site that were identified through this process were noted and corrected prior to going live.Those same injury partners and stakeholders who were involved in the consultation and iterative design process offered to assist with further dissemination when the Atlas was ready to be launched. In addition, the Atlas was made known to the Canadian injury prevention community by sending out communications though existing list-serves, which reach approximately 500 members, as well as partner organization social media channels, and was presented at conferences, professional meetings, or via webinars, and posters at academic research days.Google Analytics was used to track number of page views and user sessions, unique users and their locations, as well as length of time spent on the site, for a period of 12 months following the launch of the site on 17 March 2016. A timeline of the entire process is shown in iDOT data were amalgamated and values lower than five are not displayed.This project was reviewed and approved by the University of British Columbia Research Ethics Board (cert. # H09-01135). All testing session participants gave their written informed consent. To protect privacy, dashboard and The dashboard includes seven sections for users to explore: injury deaths, hospitalizations, motor vehicle-related injury, sport-related hospitalizations, drowning, poisoning hospitalizations and economic burden. The dashboard incorporates intuitive visualizations including stacked bar chart, timeline trend, and geographic map. Multiple views of interactive representations serve to amplify stakeholders’ cognitive capability to understand and reason using dynamic injury data. Data overview and timeline trending visualizations for holistic understanding of the injury situation.Drill down capabilities for additional levels of granularity.Built-in interactive filtering to partition the data and focus on a specific interesting subset of the data.Interactive distortion to show areas of interest with high level details while other areas are shown with low level details.“Details on Demand” to interactively select parts of data to be viewed in more detail while providing an overview of the whole informational concept. “Details on Demand” is available by hovering the mouse over a specific area of the visualization.“Interactive Linking and Brushing” to combine different visualization methods to overcome the shortcomings of a single technique. Brushing means to select a subset of injury data by clicking on it with the mouse to highlight the subset. This linking technique allows users to see how a particular data subset behaves in each of the visualizations in different windows of the dashboard.The following elements were incorporated into the dashboard’s design and function:There are two main levels to the data presented in the dashboard visualizations with a further two sub-levels for some categories. The first level is an aggregated version where data are presented as a group. The second level is more detailed by breaking down the first level . AdditioiDOT displays the data in six main sections, broken down further into topic areas. For example, the Injury Death Data section includes “region and year”, “demographics”, and “cause of injury”. Each topic area is further divided into sub-sections, which allow the user to select the information needed, such as unintentional drowning deaths in males, aged 0–4 years. The tool has been developed to allow easy navigation and minimal screen consumption. Therefore, all the parameters are stored under collapsible categories that expand when selected.The main data selection page of the By selecting specific parameters in the search selection, outputs in the form of tables and charts are generated . A summaiDOT tools by the CIHR Team in Child and Youth Injury Prevention [This section of the Atlas is content-based, and includes information about the indicators developed for the dashboard and evention ,12,13, aResults of the final usability testing sessions are displayed in The Atlas was promoted via list-serve or newsletter to approximately 15 partner organizations, including Canadian Collaborating Centres for Injury Prevention, Institute for Work and Health, BC Injury Research and Prevention Unit, Parachute, Canadian Concussion Collaborative, and Ontario Health Promotion E-Bulletin and Knowledge Translation Canada, among others. The partners were in turn encouraged to disseminate the Atlas among their own list serves. The Atlas was presented at national and international conferences . The AtlIn the 12 months following the launch of the Atlas on 17 March 2016, the website accumulated 8217 page views and 2983 sessions, with 1820 users spending an average of 3 min and 40 s, and viewing 2.75 pages per session. Approximately 60% of the website traffic was new users, and approximately 70% of all users were located in Canada. Users in Vancouver accounted for 18% of the Canadian traffic, with users in Toronto (9%), Ottawa (5%), Halifax (4%), Edmonton (2%), Calgary (2%), Kingston (2%), and Victoria (2%) comprising 8 of the top 10 cities.The Canadian Atlas of Child and Youth Injury Prevention is a unique, comprehensive resource, publicly and freely available for the use of injury prevention stakeholders, practitioners, policy- and decision-makers, and researchers across Canada. In answer to a call from the injury prevention community for better access to injury data, the Atlas is the first injury knowledge translation tool of its kind, with capabilities and features designed to promote decision-making and action. Involving data stewards from the very start of the consultation process secured their buy-in early on, paving the way for mobilizing the necessary data for testing pilot versions of the platform.iDOT, and injury insights were developed directly out of recommendations regarding the operational requirements and the child and youth injury indicators identified through the preliminary work of the team. Mock-ups built according to these foundational directives were then further developed and refined through an iterative consultation process with various injury stakeholders, which also served to enhance positive support for the Atlas within the injury prevention community.Extensive consultation with intended end-users of the final product was a key driver of the design and functionality of the tools. Users identified the need for customization, flexibility, and the ability to view select details of a subset of the data at the same time as the broader picture. The dashboard, iDOT required a substantial investment of time and resources. As a knowledge-mobilization tool, the Atlas facilitates access to data by the injury prevention agencies and partners that may not have equivalent resources to compile the data to suit their individual needs. In this capacity, the Atlas may be considered as a first step in addressing inequitably resourced efforts to reduce child and youth injury in Canada.Reflective of the fragmented nature of injury data in Canada, housed with various national, provincial, territorial or regional data stewards, the process of compiling, cleaning and linking the datasets for use in the dashboard and Evaluation and testing of the Atlas prior to going live demonstrated the utility of the tool. Users reported very few technical errors or criticisms of the interface and content. Although potentially limited by small sample sizes, evaluation data reached saturation and was gathered from a wide range of injury prevention stakeholder types to increase confidence in the generalizability of the results.Examination of the website analytics in the year following the launch of the Atlas revealed high engagement with the tool. Visitors to the site spent close to four minutes viewing multiple pages, suggesting that the content was of considerable interest to them and addressing the specific need for information that brought the users to the site in the first place.Although the Atlas is still relatively new, updates to the data will become necessary to keep the tool relevant as time goes on. Securing the required funding to maintain and update the site presents an ongoing challenge, and data sharing agreements with data providers will need to be renewed as they expire.To our knowledge, this is the first dashboard developed in partnership with the intended users, and the first time Canadian injury data has been summarized and available online in one place. However, there are some limitations. In some instances, data was not available from certain jurisdictions, most commonly the Territories and Quebec. Although a broad consultation was conducted nationally, it is possible that some stakeholders were not included. Finally, detailed data on mortality by province was not available, making comparison of death rates not possible. At the time of this writing, the Atlas is still new and dissemination efforts continue. As awareness of the Atlas continues to build, future evaluation of the Atlas will include assessment of impact on policy, practice, and research.Child and youth injury prevention research in Canada has lagged behind other OECD nations, despite existing surveillance systems and longitudinal data. A critical need to improve access to the available data, as well as need to tailor its display and interpretation, was identified by injury prevention stakeholders involved in research, policy and practice. To answer this need, the Atlas was developed to provide a vehicle for enhanced knowledge translation and mobilization with the intended audience. The dashboard feature of the Atlas was designed to assist the user in making informed and timely decisions, and prompt action to improve child and youth injury prevention in Canada, by presenting user-identified indicator metrics in a visible and understandable fashion. Users who evaluated the Atlas prior to launch found very few technical errors and indicated that they found the Atlas highly functional, intuitive, informative, and visually appealing. Stakeholders involved in the consultation and development phases continue to be involved in dissemination of the end product following the official launch in 2016.


The skyrocketing cost of newer therapies, especially the targeted drugs and immunotherapeutic agents, has taken cancer treatment beyond the reach of the majority. At the ASCO Annual Meeting in 2015, a speech at the plenary session by Dr Leonard Saltz on the cost of anticancer therapies provoked a big discussion, both in the oncology community and the media.2 and that the US Government, via Medicare, is obligated to purchase the drug at that price and is barred by law from negotiating price, is illogical, baffling, and inhumane. The affordability of cancer treatment cannot be treated similarly to that of commodities such as cars or paintings.4Some points raised by Dr Saltz are particularly noteworthy. That the median monthly price for new anticancer drugs has risen from $4,716 in 2000 to 2004 to $9,900 in 2010 to 2014 is staggering. The fact that there are no regulations on pricing of new anticancer drugs is both absurd and sad. That a pharmaceutical company is free to price its drug at whatever price it deems appropriate, on the basis of what the market will bear,5 but at a cost of nearly $295,000 per year per patient just for those two drugs. In 2012, of the 13 new drugs approved for cancer, 12 were priced at more than $100,000 per year.6 Yes, progress comes at a price, but there is a limit to what we, as a society, can afford.Dr Saltz commented on a study presented earlier in that same plenary session, which showed that the combination of nivolumab and ipilimumab resulted in a median progression-free survival of nearly 1 year in patients with metastatic melanoma,3 The disconnect between development costs and drug price is exemplified by the price of imatinib, which started at $30,000 per year in 2001 but increased to $92,000 per year in 2012, despite there being no additional development costs during that time. Further, the price did not drop but rather rose when newer competing agents, such as dasatinib and ponatinib, came on the market. In addition, as new indications for imatinib were added, making the potential market larger, the price continued to increase, further demonstrating the disconnect between drug pricing and development and production costs.8As spokespersons for the pharmaceutical industry often point out, the research required to develop new drugs requires investment and risk, with many agents ultimately not making it to market. However, the industries’ estimates of drug development costs are often highly inflated and rarely, if ever, supported by an open sharing of corroborating data.Journal of Clinical Oncology regarding the inequalities in approval of the same drug across different countries.9 The authors expressed their concern that bevacizumab, though approved in the United States and Europe for epithelial ovarian cancer, is not approved in Canada or the United Kingdom. However, the issue I want to highlight is that not only bevacizumab but nearly all anticancer drugs, both old and new, are out of reach for people living in low- and low-middle–income countries (LLMICs). I represent Nepal, a small country sandwiched between India and China, which was poor even before the recent devastating earthquake. While oncologists at the ASCO meeting were debating the value and affordability of new targeted drugs and immunotherapies, patients in my country were deciding whether to sell their house for the treatment of their mother’s ovarian cancer with paclitaxel and carboplatin, or to accept best supportive care as first-line treatment. There would be no point in talking about bevacizumab; it would be out of the realm of consideration. The affordability of generic paclitaxel and carboplatin is what would be in question.Recently, there was a Comments and Controversies article published in 10 These countries constitute one-third of the world’s population and one-half of the total cancer burden, with a mortality rate nearly twice that of the United States or the United Kingdom.10 But these countries are sidelined when it comes to accessibility of cancer therapies. When countries as large as India and China receive insufficient attention, it is not at all a surprise that a small country sandwiched between them is completely forgotten. GLOBOCAN estimates that more than 65% of cancer deaths occur in low-income countries (LICs),11 although only 5% of global cancer-care resources are directed toward these countries.12In 2014, a Lancet Oncology Commission highlighted the status of cancer epidemiology, treatment, and research in the developing countries of India, China, and Russia.13 Countries like Nepal and India need a different model of national insurance, in concordance with the local economic capacity and feasibility.13 However, even if an insurance system were to come into place, the government of Nepal, and even that of India, could never bear the current high costs of newer anticancer therapies.Nepal shares many similarities with India, including religions, culture, values, and languages, as well as the lack of a national health insurance scheme. This 100% pay-from-the-pocket model severely cripples oncologists from providing even the most basic services to patients, most of whom live well below the poverty line. The government of Nepal has allocated an allowance of 50,000 rupees (approximately US$500) for each cancer patient, which is not enough to purchase even one vial of trastuzumab.13a However, the aftermath of the earthquake is sure to divert the attention of the government to rebuilding and to the most basic health care. Concerns are already arising regarding vector-borne communicable diseases and maternal-child care in the postearthquake era.15 No article, however, has yet raised the question of cancer care in postearthquake Nepal. This lack of attention, as well as other high-priority issues after the earthquake, will further limit the oncology services in this small nation, already crippled by lack of resources, difficult geography, and a severe lack of education. It should be remembered that we are discussing providing cancer-care access to populations who truly believe that the earthquakes are due to our mountains getting angry.16Despite such difficult circumstances, Nepal had been slowly trying to raise its oncology standards with the popularization of outpatient chemotherapy, as well as beginning bone marrow transplant services in 2012.17; however, the oncology community cannot and should not move forward ignoring half of the patients with cancer in the world. How or why should anyone be excited about these advances if nearly half of those who need them are not going to receive them because of cost?How to incorporate the newer agents in the United States or European health systems should not be the only priority; how to make these agents affordable even in LLMICs like Nepal should also be a matter of discussion. There is no denying that the accessibility of expensive cancer drugs to all is still a problem in countries like the United States10 However, I am at a loss as to what the education of oncologists in Nepal should constitute. Being well versed in the major cancer treatment guidelines is more of a pain than solace in such a resource-limited setting. While the developed world is worried about the economic viability of incorporating sipuleucel-T, we oncologists in the South Asian Association for Regional Cooperation region are worried about the economic feasibility of incorporating generic docetaxel into the management of prostate cancer. Pertuzumab and trastuzumab emtansine are not the concerns in our world, where people are not able to afford even trastuzumab. For the patients and oncologists of Nepal, the finding that palbociclib is effective in breast cancer10 is similar to the discovery of black holes: quite exciting from a scientific point of view, pointless from practical point of view. Under such circumstances, practice of evidence-based medicine seems a far-fetched dream. If oncologists in Canada feel sad about not being able to prescribe bevacizumab,3 consider how it must feel to be unable to prescribe nearly 100% of targeted and immune therapies because of unaffordability! The era of targeted therapies has not yet dawned in half of the world. I, although in Japan now, get excited about every new drug discovery in cancers. But when I am back home in Nepal, such news brings despair because that is one more drug that I could use, if only we could afford it.Lack of educated manpower has been identified as an important challenge for cancer control in developing nations.4 Oncologists must bring this issue forward and encourage the media and responsible authorities to take notice. Other approaches need to focus on the costs of cancer care and what can be done to mitigate them. The high costs of cancer care in the developed world serve as the starting point from where prices in the undeveloped world are established.So how can we enable poor patients from LLMICs to benefit from progress in cancer treatment? One way is to bring awareness and attention to the problem. The recent earthquake serves as a good metaphor for cancer control in LLMICs. The media did an excellent job of covering the natural catastrophe, which brought the national and international authorities and aid agencies together to deal with this disaster. Lack of access to anticancer treatment is also a catastrophe but on an international scale involving more people.18 recently highlighted that there are too many “me too” drugs being developed in oncology. Developing many drugs belonging to the same category with little or no difference adds to development costs but adds little benefit. Although we can hope that such agents will stimulate competition and drive down prices, we have yet to see evidence of this.Tabernero8 Because the cost of supportive management is low compared with that in other nations, and the health system in these countries is English-language based, conducting phase I and II trials in these nations is much cheaper.8 This helps reduce the cost of cancer-drug development globally and also allows earlier access to these new drugs for the poor patients—a win-win. There certainly are some peculiar challenges to conducting clinical trials in LLMICs, such as overly enthusiastic endeavors from both the patients and the oncologists for inclusion in the trial, because the alternative is bleak best supportive care as a result of unaffordability of the standard treatment. However, such challenges could be addressed by rigorous monitoring of the trials and education of the oncologists and patients. One important but frequently neglected strategy is conducting research to explore cheaper alternatives to expensive therapies. Finding a cheaper alternative to an expensive therapy should be considered as important as finding a new drug. The impact on global health of the discovery of visual inspection with acetic acid to screen for cervical cancer is more significant than discovering ramucirumab’s efficacy in gastric cancer, because 85% of cervical cancers occur in low income countries (LICs)11 and these results from India are directly translatable to Nepal and other LICs.20 One more example is the recent publication from India of elective versus therapeutic neck dissection in oral cancers.21 Although it may not translate directly to high-income countries because the observation cohort underwent clinical palpation instead of imaging studies during follow-up, it is of high importance to countries like Nepal. The presentation of the paper by D’Cruz in the plenary session of ASCO and its subsequent publication in the New England Journal of Medicine represents a pleasant paradigm-shifting acceptance of the global community to the need and importance of research in LLMICs.Another opportunity that has yet to be explored and could have important positive global economic impact is early-phase clinical trials conducted in countries like Nepal and India, as we have previously proposed.9 Research done in countries like Nepal, exploring the cost-effective approaches to treatment, can be easily translated to the West.22 The recommendations made by the International Agency for Research on Cancer regarding the futility of ultrasonography, mammography with tomosynthesis and magnetic resonance imaging in breast cancer screening also present an important cost-saving finding,23 given that breast cancer is the leading cause of death in LICs.24We recently reported that a cheaper version of amphotericin B emulsified in lipids could be used as a substitute for expensive liposomal amphotericin for antifungal prophylaxis during induction chemotherapy in patients with leukemia in Nepal.25 LLMICs like Nepal also provide a unique opportunity to conduct clinical trials on cheaper options of supportive care, such as olanzapine for chemotherapy-induced nausea and vomiting, that are unlikely to be industry sponsored and conducted in the developed world.26 Olanzapine is a commonly used antipsychotic easily and cheaply available even in countries like Nepal and has already shown promising results in trials of chemotherapy-induced nausea and vomiting.28LLMICs provide a unique opportunity for cancer research because certain cancers  have a higher incidence in these regions. An active collaboration between researchers from developed countries and LLMICs could help elucidate unique strategies to combat these challenges.The New York Times that highlighted the ridiculous expensiveness of ziv-aflibercept compared with bevacizumab despite similar benefits in colorectal cancer.29 Similar to the control of profiteering by the government of Nepal after the earthquake, oncologists should join hands to protest the inflated pricing of drugs by the companies, because cancer is also a natural disaster and excessive pricing of drugs is profiteering to that end.3Oncologists themselves cannot completely solve these problems. Nevertheless, oncologists can indeed play a pivotal role if they are organized and united. Although oncologists cannot change rules and make policies, we are not entirely powerless. Just as an example, the price of ziv-aflibercept was reduced by half within 1 week of publication of an editorial in 30 or the economic analysis of CALGB/SWOG 80405.31 In fact, the journals should require all the phase III positive trials to report economic analyses as a part of their publication, similar to reporting of adverse effects. Financial burden should also be acknowledged as an important adverse event, not just for the patient but the whole family, country, and humanity.We must also promote research not just on new drug development but also on the cost efficacy of available drugs; for example, the economic analysis of adding ixabepilone to capecitabine32 Another area in which we oncologists can change is our own behaviors. It has been demonstrated that more generously reimbursed physicians tend to prescribe more expensive regimens.33Some common cost-saving measures oncologists all over the world can individually accomplish include avoiding tumor-marker surveillance, which has no benefit in most cancers, stopping the use of chemotherapy for patients with a performance status of greater than 2, and curbing the rampant use of granulocyte-colony stimulating factors despite the lack of evidence of meaningful benefit.Journal of Global Oncology. Furthermore, I am hopeful that ASCO’s first ever clinical trial, Targeted Agent and Profiling Utilization Registry (TAPUR) study, will be a blessing to many poor patients who would otherwise never have access to these drugs. ASCO has also recently published a framework to assess the value of cancer treatment options.34 This is a helpful strategy to make treatment decisions in both developed and developing countries, although further work is needed to make it more easily and swiftly usable in busy clinics. Such academic organizations also have a role to motivate the industry to fund research in LLMICs and pressure the companies on their corporate social responsibilities.35 It is no wonder that a recent survey among oncologists showed that oncologists from high-income countries were more involved in industry-sponsored research than those from LICs, and oncologists from LICs cited lack of funding as the most important obstacle.36 The Breast Health Global Initiative is another example of how oncologists can work together to make some difference.38 After the Breast Health Global Initiative, the National Comprehensive Cancer Network panel has also recently announced the launch of its guidelines on the basis of economic feasibility; the cervical cancer guidelines are already in place.39 Similarly, the International Federation of Gynecology and Obstetrics staging system for gynecologic cancers does not involve expensive imaging and yet can help inform important decisions.40ASCO has slowly but surely been expanding its network of responsibility across the globe. Along with the frequent International Clinical Trial Workshops they hold in developing countries , ASCO has also now launched a new journal to particularly address the developing world, 46 Acknowledgment of the global problem is the first step. As a representative of the oncologists and our patients from the underdeveloped world, I am saying “Me, too.”In conclusion, the underdeveloped world cannot be ignored in our planning of the global combat against cancer. The fundamental step is acknowledging the problem. I have found a number of editorials and perspective pieces in highly reputed journals on the issue of economic feasibility of anticancer treatment, but all of them focused on developed countries alone, ignoring more than half of the global cancer burden, which occurs in LLMICs.


The aim of this study was to research the relation between exposure to maltreatment in childhood and working memory capacity in adulthood. A survey among 376 females in the age between 16 and 67 was administered. Exposure to maltreatment in childhood  was assessed retrospectively using the Child Maltreatment Questionnaire , whilst the Working Memory Questionnaire  was used to assess working memory capacity . The results suggest a significantly greater prevalence of physical abuse and witnessing family violence in comparison to other forms of maltreatment in childhood. Psychological abuse and witnessing family violence have shown themselves to be statistically significant predictors for deficits in total working memory capacity, verbal recall and attention ability. The results suggest that traumatic experiences during childhood, such as abuse, may trigger particular cognitive changes which may be reflected in adulthood. It is, therefore, exceedingly important to conduct further research in order to contribute to the understanding of the correlation between cognitive difficulties and maltreatment in childhood. Child abuse and neglect are understood to be the act and/or the failure to act of a parent or caregiver which results in harm, potential harm or a threat to a child, even in situations in which the harm is accidental or unintentional . The difThe exposure to abuse and neglect in childhood is a serious stress, which, besides emotional and behavioural difficulties, can also lead to cognitive deficits . The stuStudies which have researched the connection between specific forms of abuse and neglect in childhood and cognitive functioning in adulthood suggest that individuals exposed to neglect, physical and sexual abuse have significantly poorer verbal memory capacity in adulthood than do non-abused individuals . NeglectAlthough the results of the previously mentioned studies indicate a connection between child maltreatment and deficit in cognitive abilities in adulthood, they do not offer any proof that the indicated deficits have a significant effect on the daily functioning of the individuals who have been evidenced as such. Furthermore, the studies to date have assessed exposure to one or two forms of maltreatment in childhood or they have been directed at maltreatment in general, or the forms of maltreatment were not specified at all . The afoMdn = 2.517, IQR = 1.000), and 234 women had not been exposed to maltreatment in childhood .The study sample consisted of 376 females aged from 16 to 67 years of age, of which 142 women had been exposed to different forms of maltreatment in childhood  to 3 (often).On the basis of the participants’ answers, the total result of the participants for every question was obtained through simple addition, as was the total result for the whole scale. In addition, whilst calculating the exposure to child maltreatment, dichotomous results were used, i.e., the participants were divided into two categories: the abused and the non-abused. In accordance with studies to date, the results on the specific subscales of maltreatment above a 75 percentile was used to categorize exposure to maltreatment in childhood . TherefoThe questionnaire was conducted on-line, via the web-tool Survey Monkey. The questionnaires were distributed to the participants in two ways: via social networks or via e-mail addresses, simultaneously informing them about the research being conducted. The participants were informed of the aims of the research and the anonymity of all data was stressed. It was also stressed that the assessment is on a volunteer basis and that they could withdraw from the assessment at any time. The participants were requested to be as honest as possible, and they were cautioned that there are no correct or incorrect answers. The participants filled out the questionnaires in a set order which was determined in advance: first, they had to fill out a form with questions concerning general information on the participant, then they filled the working memory questionnaire, and finally the retrospective self-assessment questionnaire on exposure to child maltreatment. The participants needed approximately 15 minutes to fill out the questionnaires.N = 376) were exposed to one or more forms of child maltreatment (Mdn) and measured variability (Q1-Q3) for each type of maltreatment. The resulting values indicate an on-average greater prevalence of witnessing family violence and psychological abuse in comparison to other forms of maltreatment.The results for the statements in the retrospective assessment of child maltreatment indicate that 142 (31.63%) participants of the total sample  and in attention abilities . Lower, but nevertheless significant differences, were evidenced in verbal information recall , executive functioning  and numerical information recall . In order to enable a clearer comparison of the attained results and to analyse the possible implications thereof, effect sizes were also determined using the Cohen d-index (d = .814) and in verbal information recall (d = .803) amongst the participants who had experienced psychological abuse and those who had not, whilst difficulties in executive functioning (d = .737), attention ability (d = .711) and numerical information recall (d = .589) showed a lower or average effect size.The differences in working memory capacity with respect to exposure to different types of child maltreatment were tested with the Mann-Whitney U test . The par d-index . The resZ = 4.567, p < .001) and in total working memory capacity , while the lowest significant differences were obtained for difficulties in attention maintenance . The results of the Cohen d-index point in the sameStatistically significant differences were determined for all types of difficulties in working memory capacity between the participants who had been physically abused in childhood and non-abused participants . The higd = .777) and executive functioning (d = .584), whereas the lowest was evident in the difficulties in recalling numerical information (d = .428) and in maintaining attention (d = .423).direction, although to a moderate to a moderate to moderately-large effect size. The highest significant difference value between the physically abused and the non-abused participants is evident in the difficulties in total working memory capacity  and executive functioning , whilst the least differences were ascertained on the subscale of verbal information recall . d = .777) and executive functioning (d = .708), which indicates an exceedingly high effect, whilst the smallest difference was evident on the subscale of attention ability (d = .364), which indicates a moderate effect.Further analysis of the results, between the participants who had been maltreated in childhood and those who had not, indicates that there is a significant difference between the two groups in all the measures of working memory capacity . The mosZ = 4.667, p < .001) and executive functioning , and the least significant differences for numerical information recall . If the obtained differences are compared to the values of the Cohen d-index, it is evident that the average effect size is exhibited on the subscale of attention ability (d = .659), total working memory capacity (d = .643) and on the subscale of executive functioning (d = 608), whereas the lowest, or weakest size is evident on the subscale of numerical information recall (d = .412).The final analysis addressed the difficulties in working memory capacity with respect to the participants’ exposure or non-exposure to family violence . StatistIn order to reveal whether a relationship exists between child maltreatment and difficulties in working memory capacity, Spearman’s rank correlation analysis was applied. The main reason for the application of Spearman’s rank correlation was the asymmetrical distribution of the result variables of maltreatment in childhood and the variables of working memory capacity. On the basis of the obtained results , we can In order to test the predictive value of various forms of maltreatment for difficulties in working memory capacity, multiple regression analysis was applied. The analyses were conducted thereby that the criteria variable in every individual, conducted analysis was a type of working memory capacity , and the predictor variables were the forms of maltreatment . According to the criteria set out by For the difficulties in verbal information recall amongst the abused participants, significant predictors proved to be the variables of psychological abuse and witnessing family violence, which combined account for approximately 12% variance of verbal information recall. The positive beta ponder indicates that frequent exposure to psychological abuse and frequent witnessing of family violence predicts more significant difficulties in verbal information recall.For difficulties in numerical information recall amongst the abused participants, not a single predictor variable proved to be significant.Psychological abuse proved to be a determinant for the difficulties in executive functioning, accounting for approximately 13% variance of the difficulties in executive functioning. The obtained values of the beta ponder indicate that frequent exposure to psychological abuse suggests a greater probability of developing difficulties in executive functioning.The results of the regression analysis conducted on the subscale of attention ability showed the variables of psychological abuse and witnessing family violence to be a significant predictor variable. The variance percentage of difficulties in attention ability which these two types of maltreatment suggest is relatively low and amounts to approximately 13%. The beta ponders indicate that there exists a greater probability that persons who were frequently exposed to psychological abuse and witnessed family violence will have more express difficulties with attention maintenance.The final regression analysis confirmed that the significant determinants for difficulties in total working memory capacity are psychological abuse and witnessing family violence. The positive beta ponders indicate that frequent exposure to psychological abuse, neglect and witnessing family violence predicts a greater probability of difficulties with total working memory capacity. The obtained significant predictors allow for 15% variance of difficulties in total working memory capacity.The results of the conducted research indicate that persons who had been exposed to some form of maltreatment in childhood have significantly more difficulties in working memory capacity than do persons who have not experienced maltreatment. Psychological abuse is the form of abuse which leads to the greatest negative consequences on cognitive functioning amongst abused individuals. The consequences are most significant in the field of general working memory capacity and executive functioning.The most frequent form of child maltreatment that the participants had been exposed to were physical abuse and witnessing family violence, which is in accordance with other studies conducted in Croatia and Bosnia and Herzegovina . In contThe results of this study coincide with the results of other studies conducted to date  which inFurthermore, psychological abuse has the greatest consequences on the cognitive functions, since the abused, besides evident difficulties in total working memory capacity, also has significant difficulties in maintaining attention and verbal information recall. The considerable difficulties of those who have been psychologically abused with attention and verbal memory coincide with biological and clinical premises. In an emotionally threatening situation, such as psychological abuse, the activity of the noradrenergic system, whose lesions cause difficulties in attention, is increased. Furthermore, the secretion of cortisol is increased which further affects changes in the structure of the hippocampus which lies at the foundation of the mentioned functions . From a Exposure to maltreatment in childhood, according to the results of this study, correlates positively with all tested working memory capacity functions. The highest correlations which are statistically significant were established for difficulties in working memory verbal information recall and in total working memory amongst persons who had been exposed to psychological abuse and witnessing of family violence. The established connection between psychological abuse and witnessing family violence and difficulties in verbal information recall and in total working memory capacity is in accordance with the earlier described biological changes. Moreover, difficulties in verbal information recall and psychological abuse and witnessing family violence coincide with the foundational assumptions of developmental psychology about the interaction of the environment on the development of verbal functions in children. For example, parents who abuse their children do not encourage verbal expression of the child, and they verbally and non-verbally do not respond to the child’s activity which affects its verbal progress. The obtained results do not support the results of The variables of psychological abuse and witnessing family violence are shown to be the most significant determinants of difficulties in total working memory capacity, verbal information recall and attention ability. In addition to the mentioned difficulties, psychological abuse is a significant predictor for difficulties in executive functioning. The obtained results can be explained as these two types of violence, particularly psychological abuse, represent an especially emotionally traumatic experience for a child, which in the early phase of development affects its neurological development and consequently evokes long-term consequences for the individual .In conclusion, we may say that persons who have been exposed to maltreatment in childhood have significantly more difficulties in working memory capacity than the participants who never experienced maltreatment. It has also been shown that the difficulties of the abused are manifested in the domain of general working memory capacity and executive functioning. The correlation analysis of the results suggests that all forms of maltreatment are significantly related to all the examined forms of difficulties in working memory capacity, whereby the correlation is highest for total working memory capacity and difficulties in the recall of verbal information. Finally, there is a significant risk for difficulties in working memory capacity amongst those who were exposed to psychological abuse or frequently witnessed family violence. Psychological abuse triggers the greatest negative consequences on cognitive functioning.It is necessary to consider some of the methodological limitations of the conducted study. The heterogeneity of the sample constitutes one of the limitations, as the demographic variables such as age and level of education may have greatly affected the obtained results. The results may have been significantly influenced by the way the abused participants were categorized. According to the models and categorization of exposure to maltreatment in studies to date, arbitrary criteria were determined according to which the abused participants represented a group which was in the upper 25 percentile. A potential deficiency in the selection of such criteria may be the uncertainty in the decision on the correct categorization. Thus, we may have undermined the presence of exposure to maltreatment because we neglected individuals who have been exposed to maltreatment occasionally, but not on a daily basis. A further limitation is the lack of a representative control group. Namely, of the total number of participants, a certain number was classified as a group exposed to maltreatment, and on the basis of assessment, they were sorted into groups according to the type of maltreatment they experienced. It is possible that the participants who were in the group of physically abused were also exposed to other forms of maltreatment besides physical abuse, which could have affected the obtained results.The applied method for testing exposure to maltreatment was based on the retrospective report of abused persons. As the participants were asked to assess their exposure to maltreatment to a set chronological age, it is possible that some participants forgot or could not recall the events from the past. However, a study conducted on anonymous participants renders it impossible to confirm the responses of the participants through independent sources .Furthermore, the data which was asked of the participants during the self-assessment of their exposure to maltreatment in childhood are of an intimate nature which could result in arising guilt complexes and thus result in dishonest responses.It should also be noted that this study did not control the duration, intensity and frequency of the maltreatment, nor the possibility of existing disorders such as post-traumatic stress disorder, attention deficit hyperactivity disorder, depressive disorders and the like, which would greatly decrease the possibility of attributing the obtained results exclusively to maltreatment. To conclude, it is necessary to also address the lack in the implemented questionnaire for testing working memory capacity, as well as the fact that the testing was done electronically. As the method for testing working memory capacity was the method of self-assessment, it is questionable to what extent the participants know themselves, which could have resulted in them supplying answers which do not correspond to their true capacity. Furthermore, the assessments were subjective, which raises the issue of the objectivity of the obtained results.The results of this research have multiple implications for further research and practice in the field of child maltreatment. This is the first study of its type in the Bosnia and Herzegovina region which comprehensively researched types of violence as determinants of cognitive functioning. The obtained results indicate that different types of maltreatment may lead to different types of cognitive difficulties. One could assume that the type of maltreatment and the duration of maltreatment may increase the susceptibility of neurocognitive dysfunction. Future studies could test how different types of maltreatment in preschool and school age interactively affect the changes in neurocognitive functioning. Furthermore, future studies could conduct a longitudinal study whose aim would be to determine the critical period of the effects of violence on neurobiological development. The measurement of neurobiological changes through brain screening techniques would provide better understanding of the relationship between maltreatment in childhood and cognitive functioning. In addition, future research should use more objective measurements for working memory, as well as clearer criteria with respect to maltreatment. For example, conducting research on a sample of participants who were victims of specific types of abuse in childhood and who were documented by social services would offer a better possibility to generalise the results.