SPECIAL PAPER. Accepted for publication 19 June Lepr Rev (2006) 77,

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1 Lepr Rev (2006) 77, SPECIAL PAPER Health systems research training as a tool for more effective Hansen s disease control programmes in Brazil ALBERTO NOVAES RAMOS JR*, JORG HEUKELBACH*, MARCIA GOMIDE*, DUANE C. HINDERS** & PIETERA.M.SCHREUDER*** *Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza **Leprosy Relief Association, Natal ***Netherlands Leprosy Relief, Rio de Janeiro, Brazil Accepted for publication 19 June 2006 Summary In Brazil, Hansen s disease (HD) is still a public health problem. Although much progress has been made in Hansen s disease control (HDC) at all levels of government over the past 20 years, efforts have been hampered by information gaps related to specific areas of the disease, exacerbated by an absence of appropriate evaluation instruments and routine systematic analysis. Health Systems Research (HSR) aims to collect the necessary data to provide the most relevant information to policy makers and health managers to take more informed decisions. In Brazil, four HSR courses on HDC were organized by two non-governmental organizations (NGOs), Netherlands Leprosy Relief (NLR) and the British Leprosy Relief Association (LEPRA) between 2001 and Key personnel working in HDC from various states were invited to participate in the courses. The research proposals were developed during an HSR workshop and carried out in the field. The research topics of the projects included the following: the integration of HDC programmes into the primary health care system; the high percentage of the new patients diagnosed and treated at state referral centres; the psychological and social impact of surgical rehabilitation; the efficacy of neurolysis; the quality of the national health information system and the effectiveness of new case detection and health education campaigns. Following the completion of the field work, the data were analysed and a research report written. The results and recommendations were later presented to key stakeholders and policy makers in the states. Practical outcomes of the HSR courses include the drafting of new HDC guidelines; improvement of health information system databases and the revision of epidemiological data. These results have been presented at national and international congresses and published in peer- Correspondence to: Alberto Novaes Ramos Jr, Departamento de Saúde Comunitária, Faculdade de Medicina, Universidade Federal do Ceará, Rua Professor Costa Mendes 1608, 58 andar, Fortaleza CE, , Brazil (Fax: þ ; novaes@iis.com.br) /06/ $1.00 q Lepra 175

2 176 A. N. Ramos Jr et al. reviewed journals. HSR has had a positive impact on the working routines of trainees through the process of learning the research methodology, collecting relevant data and implementing the recommendations that originate from the findings. We conclude that HSR is an important vehicle for human resource development and a practical tool to improve the effectiveness of HDC programmes, primarily at the state and municipal levels. HSR also is an example of a successful cooperation between NGOs and governmental organizations working in HDC. Introduction Despite intensive efforts in many developing countries to eliminate Hansen s disease (HD), it continues to be a public health problem that can leave physical, emotional and socioeconomic sequelae. 1,2 The available evidence strongly suggests that even after the elimination target of one case per 10,000 residents is achieved, a significant HD problem will continue to exist in many countries for the foreseeable future and the control efforts undertaken by those national programmes should therefore be sustained. 1,2 Brazil represents one of the countries with the highest HD burden worldwide. Although the prevalence rate has been reduced from 16 to 1 7/10,000 between 1985 and 2004, the decline in incidence has not occurred at a similar pace. In fact, the new case detection rate has increased from 1 3 to 2 8 per 10,000 over this same period. 3 Nevertheless, there is a discrepancy in the regional distribution of these cases throughout the country. In 2004, the highest detection rate was reported in the northern region (7 6/10,000), followed by the midwestern (6 5/10,000), north-eastern (3 5/10,000) and south-eastern (1 5/10,000) regions, whereas in the South of Brazil the disease is considerably less prevalent. 4,5 The North and Northeast are considered the least developed and poorest regions of the country. 6 Over the last 20 years, a series of health policy reforms have been implemented in Brazil with the objective of decentralizing preventive health measures and basic services to the primary care network. One of the most important changes has been the introduction of the Community Health Agent Programa de Agentes Comunitários de Saúde (PACS) and Family Health Programmes Programa de Saúde da Família (PSF). During this period, Hansen s disease control (HDC) has been integrated into the restructured Brazilian basic health system, a strategy that is considered effective and efficient in all national contexts This approach seeks to promote early HD detection through increased accessibility to services and awareness of the signs and symptoms of HD in the population through health education. The PSF and PACS also provide the conditions for strengthened case holding, tracing of defaulters and examination and BCG vaccination of intra-familiar contacts. 3,6 However, the PACS and PSF coverage stood at only 40% of the population in 2004, 3 and less than 30% of the PSF teams had fully implemented HDC in their routine activities. 4,7 The ongoing effectiveness and sustainability of the integration strategy is dependent upon the existence of detailed and accurate information to support decision making and resource allocation. Paradoxically, the main problem for the state and municipal HDC programmes is often not a lack of data. Managers have access to considerable amounts of data from national database used for HDC (National System for Disease Notification SINAN), as well as epidemiological bulletins and medical reports. However, there are often important gaps related to specific areas of control that are exacerbated by an absence of appropriate evaluation instruments and routine systematic analysis. This is an operational problem that calls for the training of the technicians that manage the HDC programmes and information, professionals

3 who were not necessarily prepared for the task of managing the data generated by different activities of the control programme or to give input for the best decisions. The majority of Brazilian operational research interventions, as well as those from other countries, have resulted from international co-operation agreements with NGOs from different countries The aim of this paper is to present the experience of re-introducing of the Health Systems Research (HSR) methodology in Brazil from 2001 to 2005 as a means to improve the Hansen s disease control programmes. It also seeks to give an overview of the outcomes related to human resource development, capacity building, strengthening of the HDC program at state levels, and the outcome of the specific research projects. Health Systems Research Health Systems Research (HSR) is a field of study that examines the organization, financing, and delivery of public health services within communities, and the impact of these services on public health. Such studies are designed to produce the information needed by key public health decision makers, including practitioners, administrators, and policy makers, to take informed decisions on how to improve the effectiveness and efficiency of public health systems at local, state, and national levels This is necessary because routinely collected data are often unreliable, present little information about the management of the services and do not provide information from the users point of view. While some HSR studies examine health systems in their entirety, others choose to focus on specific components, such as local health departments (municipalities), community-based initiatives, and linkages between medical care and public health providers. HSR has proved to be a very useful instrument for health managers in various countries during the past years, providing them with the necessary data to take policy-related decisions. The methodology was conceived after the concept of primary health care was introduced and subsequently evaluated negatively in terms of meeting perceived needs and providing cost-effective and readily-available services. 19 Initially, courses were developed and implemented in Central and West Africa in the eighties, subsequently extending to Southern Africa. 40 A pilot World Health Organisation (WHO) HSR workshop on Hansen s disease was organized in Kano, Nigeria, in Successively, HSR courses dealing exclusively with HD were promoted by the WHO in several African and Southeast Asian countries An example of this is the Joint HSR Project of the World Health Organisation, the Royal Tropical Institute Amsterdam (KIT) and the Netherlands Ministry of Development and Cooperation in sub-saharan Africa, which has been a useful tool for health policy makers by integrating health system research in the decision making process. 16,18 In practical terms, HSR uses a pro-active, participatory and multidisciplinary approach to identify and analyse priority problems. 17 The participative nature of HSR is one of its most defining characteristics, seeking to involve diverse stakeholders ranging from health managers to community members in the definition of the research questions. Similarly, final results are designed for presentation in the most useful format for administrators, decision makers and the community. 17 HSR training Hansen s disease control in Brazil 177 The training approach of HSR has been described in detail by Varkevisser et al. (2001). 19 The same HSR training manuals are used in Brazil, having been translated into (Brazilian)

4 178 A. N. Ramos Jr et al. Portuguese and updated in accordance with the revised edition of These manuals 17,18 are used in other countries and can be applied to study a variety of other public health issues and diseases beyond HDC. Currently, Portuguese, English, French, Spanish, Arabic, Vietnamese and Chinese versions are available. The target groups of HSR courses are health professionals and managers, as well as staff of the HDC programmes at state and municipal levels. As a rule, four trainees, preferably with different professional backgrounds, form a team. Participation in the courses is not limited to those with (para-) medical training, but preferably includes others with a background in sociology, anthropology, epidemiology or statistics. Each team is monitored by an experienced facilitator and conducts the study at the same time as its members complete their regular duties. As such, the projects are relatively small in scope and should not exceed the total cost of US $5000 each. The total duration of the HSR process is approximately 12 months, consisting of four components: (a) the participants develop research proposals during an initial workshop, (b) these same participants carry out the research in the field, (c) a second workshop is held to analyse the data and write the research report, including recommendations to be presented to key stakeholders and policy makers, and d) the research results are implemented (Table 1). Subsequently, it is possible that the cycle may start again based on the following question: Have the expected improvements been realized? If not, are there other issues that need to be further researched to meet the desired outcome? The first component consists of an 18-module workshop designed to last 2 weeks in which the research proposal is developed piecemeal. The research team carries out the steps of: selection, analysis and statement of the problem; literature review; formulation of research objectives, research methodology, work plan, and budget; definition of project administration and utilization of results; and finally, the proposal summary. Each module consists of a presentation providing basic theoretical information, group work and reporting the results in plenary, so that other group members can learn and contribute. The second component of the course includes the implementation of the proposal in the field over the course of approximately 6 12 months. In this period, the facilitators maintain regular contact with the teams and conduct visits at their place of work. Following the completion of the field work and data collection, a second workshop is held to analyse and interpret the initial results. The objective of this workshop is the composition of a report with recommendations for action to be presented to policy makers, health personnel and the communities. Table 1. Components of the courses on Health Systems Research conducted in Brazil from 2001 to 2005 Component Health System Research proposal development (First workshop) Implementation of proposal (Field Work) Analysis of data and report writing (Second workshop) Recommendations are presented to the key stakeholders and policy makers. Development and implementation of action plans Duration 6 days to 2 weeks 6 12 months 7 12 days Variable (several months to 2 years)

5 Hansen s disease control in Brazil 179 Public sector NGO cooperation to control Hansen s disease in Brazil Since the 1980s, several national and international nongovernmental organizations 12,13 (NGOs) have been cooperating with the Brazilian Ministry of Health (MoH) and its Hansen s Disease Control Programme. The NGOs field of operation is complementary to the government and they provide technical and financial resources for a wide range of activities including: human resource development, supervision, health education, prevention of impairment and disability (POID), physical and socio-economic rehabilitation, promotion of new initiatives and innovative approaches, and research Research has always been a main interest of Netherlands Leprosy Relief (NLR) through its affiliation with the Royal Tropical Institute, Amsterdam (KIT) and NLR has been involved in the development and implementation of HSR since the first workshops on HD were organized in Similarly, the British Leprosy Relief Association (LEPRA) has consistently included scientific and operational research among its institutional priorities. NLR and LEPRA have been working for many years in Brazil and are both members of the International Federation of Anti- Leprosy Associations (ILEP). HSR training in Brazil A WHO workshop on HSR was held in Brazil in This initiative was not taken further until 2001, when NLR reintroduced this methodology in cooperation with the Department of Public Health of the Federal University of Rio de Janeiro. LEPRA joined NLR in its HSR initiative in 2004, and organized an additional HSR workshop in The HDC state coordination units of the states supported by these NGOs were invited to write short research proposals before the initial workshop. Four proposals were selected for each workshop by a commission composed of experienced facilitators and representatives of the NGOs involved. It was previously suggested that the participants should have experience in HDC, clinical experience, managerial experience and/or familiarity with health information system databases. Additionally, it is essential that team members come from differential professional and operational backgrounds. Prior to the workshop, the groups were encouraged to discuss the proposed research topics with local stakeholders, seek support from local universities, review scientific literature, obtain the local HD patient database and identify the pre-requisites of the research ethics committee of the local universities. The first course was held in 2001 in cooperation with the Federal University of Rio de Janeiro. Subsequent courses in Rondônia, Rio Grande de Norte, and Ceará were conducted by the staff of the Department of Community Health of the Federal University of Ceará. In 2003, as a result of the success of this first course, the State of Rondônia decided to organize a HSR course with participation limited to that state. Given that all four teams were from Rondônia with facilitators who had gained experience from the first course, the period of this workshop was reduced from 12 to 6 days. In 2004, the first part of the third course was held in Rio Grande do Norte with participants from the north and northeast of Brazil and lasted also only 6 days. However, this was deemed to be too intensive to permit the full assimilation of the course content. The fourth course started in February 2005 with the participation of four teams from north-eastern Brazil and lasted a more manageable 9 days. Considering the experience from HSR courses in Africa, where qualitative data sometimes were not adequately processed due to the mainly quantitative background of the

6 180 A. N. Ramos Jr et al. facilitators, 18 the courses in Brazil have been conducted by facilitators with expertise in both qualitative and quantitative data analysis. Prior to the first workshop, the facilitators were trained by Dr Corlien M. Varkevisser, a collaborator in the development of the modules that were used in the WHO-KIT project in the Southern African Region. In total, four HSR courses on HD have been organized during the period 2001 to An overview of the courses, the participating states, research questions and main outcomes are summarized in Table 2. HSR results from the Brazil experience The four HSR courses trained a total of 16 teams composed of 72 individuals. Only one team trained during the first HSR course discontinued its field work and did not complete the research. Over 90% (65) of the trainees are female. The teams included professionals from several different backgrounds, including: nurses (26), physicians (21), physiotherapists (6), pharmacists (5), social workers (3), psychologists (3), statisticians (2) and one nutritionist, journalist, occupational therapist, teacher and laboratory technician. In 14 of the 16 teams, at least one member represented the State Health Secretariat (state HDC programme coordination). Others came from Municipal Health Secretariats, academic institutions and reference hospitals. The focus of several research projects was the organization and decentralization of the health system and the integration of HDC programmes into basic health services (Table 2). The excessive number of HD patients diagnosed and treated at state referral centres was another frequent topic of study. Other projects evaluated the psychological and social impact of surgical rehabilitation, the efficacy of neurolysis (nerve decompression) in the prevention of disabilities, quality of data of the health information systems and the effectiveness of case detection and health education campaigns (Table 2). The main findings of the studies relate to the following areas: coordination and management of the HDC programmes at the municipal level and the lack of political support; operational and managerial problems related to input of data into the health information system; a lack of clear referral practices between the larger reference centres and the local health service providers often exacerbated by the discrepancy in the quality and complexity of care offered at these levels; the usefulness of a participation scale to determine a patient s (restricted) participation in society; the need for baseline data and the routine application of this scale as an indication of the need for rehabilitation; that neurolysis (nerve decompression) is a very useful tool to treat nerve pain and acute and chronic neuritis without response to corticosteroid treatment, and that neurolysis has very few negative effects if any at all; new patients are more likely to seek treatment for HD on the advice of family members and friends rather than from health professionals; after 30 years of its use by the health sector and all educational campaigns, the word Hanseníase (Hansen s disease in Portuguese) still has not become part of general knowledge within the society; and the demand for post-mdt treatment due to reactions and neuritis is higher than expected within the public health system and that training of staff must take this into account. In Brazil, the workshops have been positively evaluated by the trainees. The support provided by the facilitators during the research proposal development and data analysis workshops as well as during field visits has been a positive aspect repeatedly noted by the participants. Beside the results of the implemented projects, daily activities of the HDC staff

7 Table 2. Overview of HSR courses Initial date Participating States Affiliations of team members Key question to be examined Main outcome of the research 03/2005 Rio Grande do Norte State Health Secretariat Municipal Government of the state capital (Natal) Federal University of Rio Grande do Norte Paraíba State Health Secretariat Municipal Government of the state capital (João Pessoa) State Reference Hospital Decentralization of health services and integration of control measures High volume of patients treated at the state reference level Ceará (1) National Reference Hospital High volume of patients treated at the state reference level Ceará (2) State Health Secretariat Concentration of patients treated at municipal reference centres vis-à-vis the decentralization of the health system 08/2004 Sergipe State Health Secretariat Federal University of Sergipe Decentralization and integration of the health system Pernambuco State Health Secretariat Quality of data of the health information systems Fieldwork ongoing; study seeks to modify the working methodologies used to monitor and evaluate Hansen s disease programme activities Fieldwork ongoing; identified need is the reorganization of the referral system with improved communication between the primary care network and state reference centre Fieldwork ongoing; study objectives include changes to improve the efficacy of the state reference/counter-reference network Fieldwork ongoing; partial results indicate hidden problems in the decentralization process in certain municipalities. The project seeks to re-orient the control and monitoring processes Modification of the methodologies used to monitor and evaluate Hansen s disease programme activities Improved quality of the Health Information System database as a result of strengthening of the state epidemiological surveillance and primary care teams Hansen s disease control in Brazil 181

8 Table 2. continued Initial date Participating States Affiliations of team members Key question to be examined Main outcome of the research Amazonas State Health Secretariat State Reference Hospital High volume of patients treated at reference level, decentralization and integration of the health system Changes in the procedures of the state reference centre (which had tended to hold most leprosy cases) so that its professionals recognize the need to work in conjunction with the primary care network Alagoas State Health Secretariat Evaluation of control measures Review of the state programme s activities, previously centred on health professional training to now include strengthening of political support and contacts in order to guarantee the success of the decentralization process 11/2003 Rondônia State Health Secretariat Reference Hospital Rondônia Rondônia Rondônia State Health Secretariat Reference Hospital State Health Secretariat Municipal Government (Municipality of Cacoal) State Health Secretariat Municipal Government (Municipality of Arequemes) Psychosocial impact of preventive surgery Neurolysis for the prevention of chronic sequelae Decentralization and integration of health system Evaluation of control measures, health education Incorporation and adaptation of the strategies of psycho-social and physical evaluation following surgical interventions; this includes the application of routine questionnaires and other evaluation tools Measurement of the positive impact of neurolysis in the prevention of chronic sequelae and the definition of pre- and post-operative protocol Review and alteration of the decentralization process in municipal Hansen s disease control Redefinition of health education activities, focusing more on the nuclear family and the utilization of alternative strategies, such as municipality-specific radio broadcasts 182 A. N. Ramos Jr et al.

9 Table 2. continued Initial date Participating States Affiliations of team members Key question to be examined Main outcome of the research 01/2001 Espírito Santo State Health Secretariat Municipal Government of the state capital (Vitória) Federal University of Espírito Santo Rondônia State Health Secretariat Municipal Government of the state capital (Porto Velho) Federal University of Rondônia Minas Gerais Rio de Janeiro State Health Secretariat, Federal University of Minas Gerais Municipal Government of the state capital (Rio de Janeiro) Federal University of Rio de Janeiro Control of HD at the Primary Health Care level, integration in the health sector Diagnosis and treatment of HD reactions Use of health facilities by patients after cure Social representation and stigma of Hansen s disease Identification of important advances in the integration of the most important control actions into the municipal scope of work Recognition of the positive results in the management of HD reactions, while also showing the fragilities of the treatment process. A series of guidelines were also developed to monitor reactions in the state Strengthening of the assessment activities at the time of releasefrom-treatment for MDT to improve clinical evaluation, orientation and adequate referral. Development of strategies to incorporate the management of these cases into the primary care network Strengthening of the health education activities with a focus on the need for strategies to reduce Hansen s disease-related stigma Hansen s disease control in Brazil 183

10 184 A. N. Ramos Jr et al. were affected positively by the courses and the recommendations evolving from research reports. For example, new guidelines (such as strategies for the surveillance of HD reactions in Rondônia State) were created, health information system databases were reviewed, and epidemiological bulletins were revised (Table 3). The research results of the four states of the HSR course of 2001 were presented at the 16th International Leprosy Congress in Brazil in 2002, and two teams published their work in peer-reviewed journals 27,28 (Table 3). The Rondônia study was selected as a successful experience in HD epidemiology by the Brazil Ministry of Health in Several of the papers from this and other HSR workshops were presented at the 10 th Brazilian Congress of Hansenology in Recife, Pernambuco in November It was not always easy to motivate the state HDC programme coordinators to participate in health systems research. For many coordinators, research had always strictly been the remit Table 3. Publications and congress presentations resulting from HSR workshops Congress presentations 16th International Leprosy Congress, Salvador, Bahia; August 2002 Factors Influencing the Inadequate Diagnosis and Treatment of HD Reactions in Patients in the State of Rondônia, Brazil Leprosy x Hansen s Disease: current status on social representations (SR) of a population in the metropolitan region of Rio de Janeiro Brazil Study of the Modifiable Factors in the Integration of Hansen s Disease Control into the Family Health Strategy in Espírito Santo Study of the Health Demands of Hansen s Disease Patients Following Release-from-treatment in Minas Gerais, Brazil: A Contribution to the Systematization of Health Care 3rd National Exposition of Successful Experiences in Epidemiology, Prevention and Control of Diseases (EXPOEPI) Salvador, Bahia, November 2003 Factors that Influence the Inadequate Diagnosis and Treatment of Hansen s Disease Reactions in Patients in the State of Rondônia, Brazil 10th Brazilian Congress of Hansenology Recife, Pernambuco, November 2005 Evaluation of the Effect of Neurolysis in Sensory Deficit of the Ulnar and Posterior Tibial Nerves in Hansen s Disease Patients with Neuritis Psycho-Social Aspects and Hansen s Disease Surgeries: Application of the Participatory Scale in Post-Surgical Evaluation in Porto Velho Rondônia. Decentralization of Hansen s Disease Control Activities in the Municipality of Cacoal, Rondônia: Limits and Possibilities Characterization of Hansen s Disease in the Municipality of Ariquemes, Rondônia. Hansen s Disease-Related Surgery in a Referral Hospital in Rondônia: Clinical, Surgical and Socio- Demographic Aspects in the Period of 2000 to 2002 The Development of Hansen s Disease Control Activities as seen by the Family Health Doctors and Nurses in Sergipe User Satisfaction in Hyper-Endemic Hansen s Disease Municipalities in Sergipe. Epidemiological Indicators of Hansen s Disease in Aracaju/Sergipe. Hansen s Disease: Monitoring and Evaluation of Control Activities at the Primary-Care Level in Three Hyper- Endemic Municipalities in the State of Sergipe. Publications in peer-reviewed journals Impairments and Hansen s disease control in Rondônia state, Amazon region of Brazil. Leprosy Review Social representation of Hansen s disease thirty years after the term leprosy was replaced in Brazil. História, Ciências e Saude de Manguinho. Study of the Factors that Influence the Inadequate Diagnosis and Treatment of HD Reactions in Patients in the State of Rondônia, Brazil. Hansenologia Internationalis. Other publications Guidelines for Management of Hansen s Disease Reactions in Rondônia (first version) Epidemiological newsletters in the states of Rondônia and Ceará

11 Hansen s disease control in Brazil 185 of universities, and they believed themselves to be unprepared to conduct research given that their main job had always been to coordinate and implement a control programme. This reluctance also stemmed from the doubt that they would be able to carry out research along with all the other tasks of their daily work. In their daily routine, they faced many operational problems but often more attention was paid to improving the epidemiological indicators and not necessarily tackling the underlying operational problems. The HSR courses and the experience of completing an operational research project have helped to change this. After all the difficulties of attending the courses, the rigorous schedule, the process of project approval by the local research ethics committee, the extra work to collect data, the data analysis and final workshop to define the results, conclusions and recommendations of their own work, as well as subsequent presentations of their work in national and international congresses, it is rewarding to see how deeply the participants had gained from this experience, both professionally and personally. Discussion and conclusion The experience from Brazil suggests that HSR is a tool which is applicable and useful for providing information for policy making, as well as planning, executing and monitoring HDC programmes. 11 The application of this method has been shown to be feasible in different political, social, economic and epidemiological contexts in Brazil. The methodology and course material was easily adapted to local settings. This suggests that HSR on HD may be used successfully in other countries with endemic HD. The multidisciplinary character of HSR workshops in Brazil resulted in studies with a variety of different theoretical and practical aspects in epidemiology, biostatistics, sociology, psychology, political science, information science and operational research. Most of the outcomes had a significant influence on the establishment of priority within the states and municipalities. One of the main conclusions of the HSR projects in Brazil is that without a skilled coordination team managing the HDC programme at municipal level and without the necessary political support, decentralization and integration of the HDC in the primary care network will not progress. Without an effective referral (and counter-referral) system and support of the PSF/PACS by the staff at the referral centres, basic health professionals will continue to feel insecure in diagnosing and treating HD patients. Our experience has shown that the trainees, usually health personnel at state and municipal level, develop and execute adequately designed HSR projects, provided they are appropriately trained, supported and guided during and between workshops by experienced and dedicated facilitators. In addition, the course participants have used the experience gained in HSR in other projects conducted at their departments and institutions. It is advisable to include at least one participant from a local university, given a likely background in research, and preferably from a field not usually present in the routine health services, e.g. a statistician or a sociologist/anthropologist. Nevertheless, this is not always an easy or successful approach. In one state, after a member of the local university was invited to participate, the team leader was rebuked and told that health personnel not working at a university or without an academic background could not conduct proper research. Similarly, at a recent congress of the Brazilian Society of Hansenology one of the lecturers classified operational research as non-scientific research as opposed to scientific research. This kind

12 186 A. N. Ramos Jr et al. of prejudice apparently still exists and the only way to combat such attitudes is by widespread implementation of HSR, and by presenting and publishing its results. In a few cases, all trainees came from the same institution, which facilitated implementation of the projects. On the other hand, the cooperation between team members from different backgrounds and disciplines, and teams from different states with different realities enriched the discussions and the proposals with constructive comments. The intraand inter-group dynamics were important to create a setting of positive competition. Facilitators need to be aware of the group dynamics, especially in case of problems between participants within a group. Problems that arose from different educational backgrounds and/or hierarchical positions of trainees led to tensions during team work at some moments. It is the facilitators role to detect and control these situations at an early stage. It will obviously not be possible to include all of the stakeholders and decision makers in the research teams, but their involvement in the selection of the research problem will facilitate the implementation of the recommendations later on. 19 The constructive competition observed by Varkevisser et al. (2001) 19 in African HSR, in the Brazilian point of view, may be better described as a spirit of cooperation which was further enhanced by the fact that all teams were working on the same general topic: the control and elimination of HD. Problems occasionally encountered in Africa, such as unstable governments, underinvolvement of the communities affected and the insufficient dissemination of research results could prove to be problematic in some cases in Brazil as well. Originally, the first component was designed to last at least 2 weeks. It soon turned out in Brazil that most trainees were unable to leave their duties for such an extended period. As such, the duration of the workshop had to be reduced. The two workshops (in Rondônia and Rio Grande de Norte) lasting 6 days only proved to be a severe drain on the participants and the facilitators. A period of 9 days during the Ceará workshop offered a fair balance between the need to develop a well-argued research proposal and the time constraints of being away from home and work. Course participants tended to be optimally involved when the course took place at a neutral venue (not in the home town of the participants or facilitators). One problem encountered while looking for suitable locations was that fast and reliable internet access is not always available outside the larger urban centres. This access is crucial for optimization of the workshop and to avoid frustration of the study participants when information is not available. The internet access reduced time and costs of the workshop, as the library visit foreseen in the original manual became dispensible. In addition, the quality of the proposals were based more on evidence and thus needed less adaptation after the workshop. Because the duration was shortened to less than the envisioned two weeks, the importance of field visits by the facilitators must be stressed. At least two visits seem to be appropriate: first after the pre-testing to finalize the research tools, and again during the data collection period to monitor the field work, guide the data processing and establish the database. Additionally, if a database could be prepared before the final workshop, the duration of that workshop could also be shorter than the advised 2 weeks. This is especially true if the theoretical components are limited to the direct needs of the participants in data analysis and report writing, leaving more complicated statistical constructions to a statistician. The modification in the duration of the workshops did not negatively influence the outcome, except for the fact that more was asked from the participants and facilitators in a limited time. The varied areas of expertise of the facilitators, notably in regards to quantitative and qualitative methods, were also essential for the success of the groups.

13 Hansen s disease control in Brazil 187 Another important outcome from the workshops is the personal development of the participants. Many of them had never been involved with research, the development of project proposals, research design, data processing, and/or analysis. All study participants emphasized their new abilities of carrying out other studies as a result of the training. The participants tend to become more critical and willing to develop strategies to improve the surveillance and control of HD as public health problem. Currently, several participants are planning to enrol in Masters of Public Health courses. The HSR methodology may also be adapted and used at the academic level in Masters Degree Programmes in Public Health or Epidemiology that include applied research in their curricula. Considering the positive experience of the HSR courses on Hansen s disease, the Brazilian National Programme of Sexually Transmitted Infections and AIDS is currently planning to implement HSR. 39 It can be concluded that HSR is an important tool for human resource development and at the same time a practical tool to define and address weaknesses of the HDC programmes at the local and state level. HSR is an example of a successful cooperation between NGOs and governmental organizations in HDC. Acknowledgements The authors wish to thank Dr Corlien M Varkevisser, emeritus professor of medical anthropology, University of Amsterdam and Dr Pieter Feenstra, Royal Tropical Institute Amsterdam (KIT). References 1 International Leprosy Association (ILA). Report of the International Leprosy Association Technical Forum, Paris France February. Int J Lepr Other Mycobact Dis, 2000; 70: S1 S62. 2 Britton WJ, Lockwood DNJ. Leprosy. Lancet, 2004; 363: Meima A, Richardus JH, Habbema JDF. Trends in leprosy case detection worldwide since Lepr Rev, 2004; 75: Brazilian Ministry of Health, Secretaria de Vigilância em Saúde. Departamento de Análise de Saúde. Saúde Brasil 2004 Uma Análise da Situação de Saúde Ministério da Saúde, Brasília 2004, pp Brazilian Ministry of Health. Secretaria de Vigilância em Saúde. 2005a. hanseniase/dados.htm 6 Brazilian Ministry of Health. Secretaria de Vigilância em Saúde. 2005b. destaques/outras2005.htm#hansen_ Cunha SS, Rodrigues LC, Duppre NC. Current strategy for leprosy control in Brazil: time to pursue alternative preventive strategies?. Pan Am J Public Health, 2004; 16: Porter JDH, Ogden JA, Ranganadha Rao PV, et al.. Lessons in integration operations research in an Indian leprosy NGO. Lepr Rev, 2002; 73: Feenstra P, Visschedijk J. Leprosy control through general health services revisiting the concept of integration. Lepr Rev, 2002; 73: Mallick SN. Integration of leprosy control with primary health care. Lepr Rev, 2003; 74: Kalk A, Fleischer K. The decentralization of the health system research in Colombia and Brazil and its impact on leprosy control. Lepr Rev, 2004; 75: Kalk A, König J. NGO and state: co-operation between a leprosy relief association and other institutions in South America. Lepr Rev, 2002; 73: Kalk A. A cooperação entre uma ONG e os Estados anfitriões no controle da hanseníase na América Latina. Cadernos de Saúde Pública, 2003; 19: Al Samie AR, Qubati YA. Leprosy control in the Republic of Yemen: co-operation between government a nongovernment organizations, Lepr Rev, 2004; 75:

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