Participatory epidemiology: Approaches, methods, experiences

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The Veterinary Journal xxx (2011) xxx–xxx

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Review

Participatory epidemiology: Approaches, methods, experiences Andrew Catley a,⇑, Robyn G. Alders b, James L.N. Wood c a

Feinstein International Center, Tufts University, P.O. Box 1078, Addis Ababa, Ethiopia Cummings School of Veterinary Medicine, Tufts University, 200 Westboro Road, Grafton, MA 01536, USA c Department of Veterinary Medicine, Cambridge University Veterinary School, Madingley Road, Cambridge CB3 0ES, UK b

a r t i c l e

i n f o

Article history: Accepted 11 March 2011 Available online xxxx Keywords: Participatory epidemiology Participatory approach Participatory methods Disease control

a b s t r a c t Participatory epidemiology (PE) is an evolving branch of veterinary epidemiology which uses a combination of practitioner communication skills and participatory methods to improve the involvement of animal keepers in the analysis of animal disease problems, and the design, implementation and evaluation of disease control programmes and policies. This review describes the origins of PE and how the application of PE requires attention to both a participatory approach and participatory methods, supported by triangulation of data with conventional veterinary diagnostic methods. The review summarizes the various adaptations and uses of PE, including the design of primary veterinary service delivery systems, veterinary research and disease surveillance. In contrast to conventional data collection methods, an integral aspect PE is the concept of applying and evaluating new disease control programmes or surveillance systems in partnership with animal owners. In the developing regions where PE has been most commonly used, this action-orientated approach raises important challenges for veterinary institutions with limited financial resources. Information derived from PE studies can also question longstanding disease control policies and norms, nationally and internationally. Ó 2011 Elsevier Ltd. All rights reserved.

Introduction In the early 1970s it became evident that formal data collection methods were not well-suited for the design of rural development programmes in less developed countries (Chambers, 1983). As a result, alternative systems of inquiry and learning began to evolve, leading to the development of Participatory Rural Appraisal (PRA) as a multidisciplinary approach, with the emphasis on local analysis and action with communities (Chambers, 1994). Veterinarians began using participatory methods in the 1980s (Leyland, 1991), particularly in community-based livestock projects in Africa and Asia. By the late 1990s there was increasing use of the methods (Catley, 2000; Alders and Spradbrow, 2001) and the term ‘participatory epidemiology’ (PE) became more commonly used to describe veterinary applications of PRA-type approaches and methods. However, whereas PRA was a multidisciplinary approach to various development problems in rural communities, PE evolved with a focus on livestock diseases. Although much of the early development of PE occurred in remote and conflict-affected pastoralist areas of the Horn of Africa, the last 10 years has seen considerable growth in veterinary uses of participatory methods in other regions. A search of the Commonwealth Agriculture Bureau Abstracts database using the term ⇑ Corresponding author. Tel.: +251 911 366189. E-mail address: [email protected] (A. Catley).

‘participatory and epidemiology’ in April 2010 produced nine papers for the period before 2000, and 77 papers for the period 2001–2010. This review explains the origins of PE, offers a working definition, and describes how PE has been adapted for different uses. We examine some of the strengths and weaknesses of PE, and suggest options for ensuring the quality of PE. The manuscript does not cover the uses of participatory approaches and methods in livestock production and research, although a substantial literature is also now available in this area (see, for example, Conroy, 2005). A working definition of ‘participatory epidemiology’ Participatory epidemiology is the systematic use of participatory approaches and methods to improve understanding of diseases and options for animal disease control. This definition refers to both a ‘participatory approach’ and ‘participatory methods’, indicating that an understanding of both approach and methods are needed to define PE. We propose that the term ‘participatory’ in PE is used to refer to the essential involvement of communities in defining and prioritizing veterinary-related problems, and in the development of solutions to service delivery, disease control or surveillance. As we explain later in the review, use of the term PE that does not involve communities in these ways is considered to be a misnomer.

1090-0233/$ - see front matter Ó 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.tvjl.2011.03.010

Please cite this article in press as: Catley, A., et al. Participatory epidemiology: Approaches, methods, experiences. The Veterinary Journal (2011), doi:10.1016/j.tvjl.2011.03.010

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What is a ‘participatory approach’? An important concept behind the development of PRA was that professionals needed to change their attitudes and behaviour when working with poor people in developing countries. The need for attitudinal change emerged from distinct disciplines and movements, but according to Chambers (1994), an important influence was the Adult Education Movement (Friere, 1968) and a realization that despite limited formal education, poor people were able to conduct their own investigations and analyses, and could design, plan and enact initiatives to solve local problems. During this process the role of the typical educator was changed to facilitate applied research and learning among co-learners, rather than prescriptive instruction. From the 1980s, social scientists became more involved in international development, especially agricultural research and human health projects. Research on these projects led development professionals to understand better that rural people had their own complex knowledge which had developed over many years, according to local environmental and socio-cultural conditions. This research challenged conventional development approaches, in which modern technologies were viewed as superior to local know-how. The term ‘indigenous technical knowledge’ became popular in research and development organizations, as a research subject but also as a means to use local knowledge and experimentation in the design of development projects (Brokensha et al., 1980). In terms of a participatory approach, attention to indigenous knowledge required professionals to acknowledge that rural people were not ignorant and could make important intellectual contributions to development. A third importance influence on the emergence of participatory approaches was agroecosystem analysis in the early 1980s. This was a systems-based, multi-disciplinary and largely qualitative approach which allowed farmers to become directly involved in local, context-specific research and analysis. It assumed that within a given agroecological system, a few strategic management changes could produce substantial improvements to the system as a whole (Conway, 1985). Furthermore, the required changes could be identified rapidly without a detailed quantitative description of every element of the system. A participatory approach was often explained by reference to ‘top-down’ vs. ‘bottom-up’ development. The former referred to the design of development projects solely by professionals and academics, with no local consultation and consequently, limited local interest or commitment to support or sustain project activities. In contrast, bottom-up development was viewed as participatory and required joint analysis, planning and monitoring with local people. From the mid-1970s, community participation became central to the development strategies of international aid donors and non-governmental organizations (NGOs). However, community participation and participatory approaches were subject to mixed interpretations and uses, with implications in terms of the effectiveness of projects and the extent to which benefits were sustained (Pretty, 1995; Rifkin, 1996). It became evident that the term ‘community participation’ was used to describe diverse processes, which included the use of communities simply to provide information to outsiders to meet project objectives, which were defined externally. Several years before the emergence of PE, veterinarians and social scientists began to use participatory approaches in two related areas. First, the early development of community-based animal health worker (CAHW) systems in India (Hadrill, 1989), Afghanistan (Leyland, 1992) and Africa (Maranga, 1992; Leyland, 1996) was based on participatory inquiry with livestock keepers. Second, research on ‘ethnoveterinary knowledge’ became popular

(Mathias-Mundy and McCorkle, 1989) as a means to document local understanding of livestock and wildlife diseases, and related terminology. However, as community-based, participatory approaches became more widely applied, diversity in interpretations and uses followed a similar pattern to that reported in rural development and health projects. We discuss the implications of these mixed interpretations and uses of PE by veterinarians and researchers later in the review. Participatory methods Types of participatory methods Participatory methods evolved mainly from social sciences, especially social and medical anthropology, and agroecosystem analysis. From social anthropology came various informal interviewing methods, such as group interviews and semi-structured interviews (SSI). Rather than using structured, pre-set questions as in a questionnaire, a SSI was more like a guided conversation (Slim and Thomson, 1994; Pretty et al., 1995). With a mental note of the key research themes, the interviewer could phrase and rephrase questions, and follow-up interesting and unexpected responses. The use of open rather than closed questions was central to the method. Visualization methods, derived from approaches such as agroecosystem analysis (Conway, 1985), were a second important Table 1 Types of veterinary information collected using participatory epidemiology methods. Method Informal interviews Semi-structured interviews

Time-line

Information Used in most PE studies and in combination with visualization, and ranking and scoring methods; also used as a stand-alone method (Mariner and Roeder, 2003; Bagnol, 2007; Ahlers et al., 2009) History and timing of disease events (Admassu, 2005; Bagnol, 2007; Ahlers et al., 2009)

Visualization methods Participatory Livestock movements with respect to the location of mapping grazing areas and water points (Hadrill and Yusuf, 1994); spatial exposure to disease vectors (Catley, 2004) Seasonal Seasonal variation in disease incidence (Catley et al., calendars 2002a); seasonal variation in human livelihoods e.g. consumption of livestock products and livestock trade (Bagnol, 2007; Ahlers et al., 2009; Barasa et al., 2008); seasonal variation in contact with disease vectors, neighbouring livestock and wildlife (Catley et al., 2002a); seasonal variation in vector populations (Catley and Aden, 1996) Proportional Age structure of livestock herds (Barasa et al., 2008); a piling disease incidence and mortality estimates by age group (Rufael et al., 2008); impact of vaccination on livestock mortality (Catley et al., 2009); case fatality rates (Bekele and Akuma, 2009) Radar diagrams Analysis of disease control strategies (Grace, 2003) Ranking and scoring Simple ranking Simple scoring Matrix ranking Matrix scoring

Before-and-after scoring

Analysis of disease control strategies (Grace, 2003) Prioritization of livestock diseases (Bedelian et al., 2007) Analysis of disease control options (Catley et al., 2002a) Local characterization of the clinical signs and causes of disease (Catley and Mohammed, 1996; Shiferaw et al., 2010); local characterization of disease vectors (Catley and Aden, 1996); comparison of clinical diagnoses of livestock keepers and veterinarians (Catley, 2006); analysis of veterinary service providers (Admassu et al., 2005) Impact of veterinary services on the livelihoods impact of diseases (Admassu et al., 2005)

a Proportional piling is a visualization method but the results are recorded numerically.

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Mean herd incidence (%) and 95% Cl (shown by bars)

group of participatory methods, and recognized that certain types of information could not easily be expressed verbally or in writing. In addition, the construction of diagrams did not necessarily require informants to be literate because objects and signs could be used to depict important features on the diagram. Diagrams could be constructed on the ground with local materials, and usually involved groups of informants working together. In PE, participatory mapping, seasonal calendars, proportional piling and radar diagrams are examples of visualization methods (Table 1). Proportional piling and some types of seasonal calendars use piles of counters (such as seeds or stones) and can thus result in numerical recordings. When standardized and repeated with individual informants or groups of informants, data can be summarized and analyzed using conventional statistical tests (see, for example, Catley et al., 2001, 2002a, 2002b; Barasa et al., 2008; Jost et al., 2010) (Fig. 1). Ranking and scoring methods were the third main group of participatory methods and usually required informants to compare different variables using either ranks or scores. Typically, piles of counters such as seeds or stones were used for ranking and scoring, and in common with interviewing and visualization methods, illiterate informants could participate. Scoring methods were more sensitive than ranking, allowing a weighting of responses. The numerical nature of ranking and scoring methods made these methods easy to standardize and repeat, with the data being analyzed using conventional statistical tests (Fig. 2). Scoring methods and proportional piling were also used in control studies, often using a retrospective study design. For example, in Ethiopia simple scoring of the impact of diseases treated and not treated by CAHWs was used as part of an assessment of the performance of these workers (Admassu et al., 2005). Also in Ethiopia, proportional piling was used to compare livestock mortality, by livestock species and disease type, in vaccinated and non-vaccinated herds (Catley et al., 2009). In Northern Kenya, Bekele and Akuma (2009) used proportional piling to compare case fatality rates in livestock, by species and disease, in herds treated by CAHWs compared with herds treated

by livestock keepers. Participatory, gender-sensitive methodologies have been developed for use with small livestock, especially family poultry (Bagnol, 2007; Ahlers et al., 2009). Women and men in different cultural and ecological settings have a different repertoire of opportunities and responsibilities, interests and access in terms of livestock ownership and management, and issues of animal and human health (Bagnol and Hickler, 2010). In addition, men and women have differential access to information and health-related resources, and they often behave differently in response to diseases in animals or humans. Likewise, exposure to health risks may be gender associated. For example, the involvement of women in poultry care and the preparation of poultry carcasses in Egypt may contribute to higher incidence of HPAI in women (Kaoud, 2008). Same sex discussion groups enable these gender differences to be explored in a relatively neutral environment. Gender analysis tools that can be tailored to animal health activities include: Livestock Keeping Household Activity Profiling; Livestock Activity, Access to and Control over Resources Profiling; a Livestock Resources and Benefits Index; and a Practical and Strategic Gender Needs in Livestock Management Index (Bagnol and Hickler, 2010). Given women’s responsibilities with regard to caring for children, the infirm and other household duties beyond their roles in animal husbandry, specific attention is required to facilitate women’s participation in discussions with regard to the location and timing of activities (Alders and Spradbrow, 2001). Until the late 1990s, veterinarians and epidemiologists in government, academia and research centres tended to view participatory inquiry as a ‘soft’ approach which was practiced by social scientists, and which lacked the rigor of conventional scientific research (Catley, 2000). In part, these perceptions related to the early development of participatory methods for livestock research and development (see, for example, Kirsopp-Reed, 1994), and very limited or no repetition of methods with different informants. Also, non-veterinarians were using PRA methods and misinterpreting local descriptions of diseases. In part, the emergence of PE as distinct from PRA-type activities was associated with more refined

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0 jabie

waela

goromsa

hawicha

Age group Fig. 1. Mean herd incidence of gandi/trypanosomosis in Orma cattle, Kenya, 1999–2000 (Catley et al., 2002a). Data derived from proportional piling; n = 50 herds. Age groups: jabie 0–2 years; waela 2–3 years; goromsa 3–4 years; hawicha >4 years.

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Diseases

Signs

Gandi Trypanosomosis

Hoyale Foot-and-mouth disease

Buku Haemorrhagic trypanosomosis

Somba Contagious bovine pleuropneumonia

Madobesa Rinderpest

4.5 (3.5-6.0)

1.5 (0-3.0)

0 (0-0.5)

11.5 (7.5-14.5)

0 (0-3.0)

1.0 (0-3.5)

15.8 (10.0-20.0)

1.5 (0-4.0)

1.0 (0-4.0)

0 (0-0)

3.0 (1.0-5.5)

0 (0-0)

5.5 (3.0-8.5)

0 (0-0)

12.5 (8.5-15.5)

3.0 (0-5.0)

0 (0-0)

17.0 (15.0-20.0)

0 (0-0)

0 (0-0)

4.25 (2.5-6.5)

0 (0-0)

1.0 (0-2.0)

14.5 (12.5-16.5)

0 (0-0)

5.25 (3.0-7.5)

6.0 (3.0-9.0)

2.5 (0-4.5)

3.0 (0.5-8.5)

1.5 (0-2.5)

14.2 (10.0-19.0)

0 (0-0)

0 (0-2.5)

0 (0-0)

3.5 (0-7.0)

0 (0-3.5)

0 (0-0)

17.5 (13.5-20.0)

0 (0-0.5)

0 (0-1.5)

11.0 (5.5-17.5)

0 (0-0)

0 (0-5.0)

4.0 (0-10.0)

0 (0-0)

Chronic weight loss (W=0.59***) Animal seeks shade (W=0.59***)

Diarrhoea (W=0.78***)

Haemorrhagic carcass (W=0.83***)

Coughing (W=0.86***)

Reduced appetite (W=0.26*)

Loss of tail hair (W=0.65***)

‘Death is sudden’ (W=0.78***) Oedematous carcass (W=0.46***)

Fig. 2. Use of matrix scoring for local characterization of cattle diseases with Orma pastoralists, Kenya, 2000 (Catley et al., 2002a). Number of informant groups = 12; W, Kendall’s Coefficient of Concordance (P < 0.05; P < 0.01; P < 0.001). The black dots represent the median scores (number of stones) that were used during the matrix scoring; 95% confidence limits are shown in parentheses, and were calculated using Confidence Interval Analysis Version 1.2 software (Gardner et al., 1992). Orma words are italicized. Hemorrhagic trypanosomosis refers to acute hemorrhagic disease caused by Trypanposoma vivax.

adaptation of PRA methods, repetition of methods and statistical analysis, and the involvement of veterinarians to provide more valid interpretation of local information on diseases. The systematic use of PE methods such as proportional piling and matrix scoring, which produced numerical data, probably played an important role in making PE more acceptable in terms of scientific publications. When relatively simple statistics were used, results could also be presented and discussed with local people, as part of the participatory research process and lead to further insights and clarifications (see, for example, Catley et al., 2002a;

Grace, 2003). Presenting results visually using pie charts or bar charts also meant that illiterate people could contribute to community-level discussions. However, as statistical analysis becomes more complex it is less likely that results would be shared with communities, or that communities can be asked to comment on or verify the findings. In these situations, the PE process becomes somewhat similar to conventional research with researchers extracting information from local people and, if so, this raises important dilemmas for PE practitioners. A purist view of PE would emphasize the importance of a

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genuine participatory, gender-sensitive approach, with professionals responding to local priorities, co-ownership of information and analysis with communities, and joint action to solve local problems. In contrast, the use of participatory methods in the absence of a participatory approach reflects more conventional research. The use of more innovative visualization techniques, an early example of which is provided by Florence Nightingale’s innovative graphs, including her ‘rose’ diagram (Nightingale, 1858), to present complex time series data might allow continued progress in this area. Participatory methods and non-sampling errors A common problem with the use of conventional questionnaires in rural development and health surveys in developing countries was non-sampling errors (see, Chambers, 1983; Stone and Campbell, 1984). Similarly, veterinary researchers have noted the importance of interviewer communication skills and pre-testing questionnaires as a means to reduce non-sampling errors, such as errors arising from badly phrased or insensitive questions (Perry and McCauley, 1984; Pfeiffer, 1996). However, pre-testing is often difficult to implement in more remote areas, and advice on questionnaire use in the veterinary literature often failed to provide specific information on the communication skills that were needed by interviewers, or how these skills could be acquired (Catley, 2004). In general, PE was conducted in local languages using trained researchers and facilitators. Local disease names were used, and in some diagnostic or exploratory studies, specific attention was directed at the correct translation of these local names into scientific terms, being either specific diseases or disease syndromes. In the literature of PE there were also examples where PE methods were designed on the ground, and with communities, to specifically reduce non-sampling errors. Examples include the use of seasonal calendars to visualize seasonal variations in disease occurrence or vector populations, where local names of seasons are used with local names for diseases and vectors (e.g. Catley et al., 2002b); the measurement of age-specific disease incidence using local disease names and local definitions of livestock age groups (Catley et al., 2002a; Fig. 1); and measurement of herd structures using local names for different types of livestock (Barasa et al., 2008).

tists might use both a questionnaire survey and focus group discussions to study the purchasing behaviour of supermarket users. Again, a similar across-method approach is used during veterinary diagnosis when a clinician combines methods such as clinical examination, laboratory tests and post mortem examination to reach a diagnosis. In common with the use of within-method triangulation by veterinarians, across-method triangulation is a wellestablished clinical approach to strengthening the validity of diagnosis. When used for disease investigation or exploratory studies, PE has used methodological triangulation by cross-checking information within specific participatory methods, by comparing the findings of different participatory methods, and by comparing findings of participatory and conventional veterinary diagnostic methods (Table 2). Fig. 3 illustrates the ways in which participatory and conventional diagnostic methods are complementary in terms of supporting across-method triangulation. In the context of diagnostic work in resource-poor and remote areas, clinical and post mortem examination by a veterinarian is particularly important because laboratory support is often of poor quality or inaccessible, or, there are inherent weaknesses in the specificity or sensitivity of laboratory tests (Catley, 2006). However, in many PE studies no information on basic, conventional diagnostic methods was collected even when these studies involved veterinarians. In some cases, general disease surveys using PE reported numerous diseases without supporting informant diagnoses either clinically, or by using laboratory tests or post mortem findings (Bedelian et al., 2007; Bett et al., 2009). Combinations of participatory and conventional methods can also be useful for the design of disease surveillance. For example, the positive predictive value of livestock keeper diagnosis at herd level was calculated for rinderpest in East Africa (Mariner and Roeder, 2003) and for foot-and-mouth disease in Tanzania (Catley et al., 2004). In both cases, results indicated that surveillance for these diseases could draw heavily on livestock keeper’s observations. However, surveillance for other diseases is more problematic. For example, HPAI in poultry often presents as non-specific sudden death, in common with various other poultry diseases such as Newcastle disease (Alders and Bagnol, 2007). Therefore, HPAI surveillance systems need strong laboratory support (e.g. a good pen-side test) to distinguish deaths due to HPAI from other diseases (Azhar et al., 2010).

Participatory methods, conventional methods and triangulation Triangulation is the use of two or more methods, data sources, observers or investigators, or theories within the same study (Denzin, 2006). Historically, triangulation has roots in the social sciences, and in part, was used as an approach for improving data validity. In PE two types of methodological triangulation have been of particular relevance viz. ‘within-method’ and ‘across-method’ triangulation. Within-method triangulation can be explained using the example of an interview method, during which the researcher crosschecks information provided by an informant during the interview itself. For example, a response during the early stage of an interview might be checked later on using a re-phrased question. This type of triangulation takes place within the method, and to some extent, depends on the skill and experience of the researcher. Veterinarians commonly use a similar interview and cross-checking approach when taking a case history from an animal owner. Therefore, within-method triangulation was already a well-established feature of clinical veterinary diagnosis many years before PE evolved, although the term ‘triangulation’ was not widely used. Across-method triangulation uses two or more different methods to study the same research question. For example, social scien-

Table 2 Examples of triangulation in participatory epidemiology. Participatory method

Triangulation method(s)

Matrix scoring of cattle disease signs and causes

Clinical and post mortem examinations; laboratory detection of disease agents; reference to textbook descriptions of diseases (Catley et al., 2001, 2002a, 2004; Gizaw, 2004) Objective measures of seasonal rainfall; textbook descriptions of seasonal variations in incidence and risk factors, such as exposure to wildlife or vectors Parasite surveys (e.g. trypanosomes, liver flukes); serologya; textbook descriptions of disease incidence by age group; professional expert opinion Textbook descriptions of disease mortality by age group; professional expert opinion

Seasonal calendars of rainfall, disease incidence and risk factors Proportional piling of disease incidence by age group

Proportional piling of disease mortality by age group

a In general, serology measures exposure to a disease agent not disease, and therefore is an indirect measure of incidence; levels of seroconversion would usually be higher than incidence estimates, because not all exposed animals usually become sick. For some diseases, specific serological tests are a more direct measure of clinical disease e.g. the complement fixation test for contagious bovine pleuropneumonia, and the detection of antibody to non-structural proteins of foot-andmouth disease virus.

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Reference to secondary data Reference to secondary data

Time-lines

Case history

Mapping of livestock movements and contact with vectors or wildlife

Matrix scoring of disease signs and causes

Proportional piling of mortality and morbidity

Participatory methods

Conventional veterinary methods

Key informant interviews

Seasonal calendars of diseases, parasites and vectors

Laboratory tests

Clinical examination Direct observation Gross pathology

Fig. 3. Combining conventional diagnostic methods and participatory methods in participatory epidemiology (adapted from Catley, 2004).

Although there have been many technical advances in veterinary diagnostic tests, such as the emergence of molecular techniques, severe limitations in laboratory services in many developing regions continue to limit the extent to which these new tests are used. In much of the Horn of Africa for example, the reality is that most district-level veterinary offices probably lack a functioning microscope and basic reagents, have limited sampling equipment, and few resources to transport samples to more well-resourced central laboratories. In this context, much research and surveillance in these areas will continue to rely heavily on information provided by livestock keepers. When PE is used, there is a need to improve the systematic use of simple and inexpensive clinical and post mortem examination as a means to triangulate information derived from PE methods. Although veterinarians are trained in these diagnostic methods, as we indicate above, their use in PE studies has often been lacking.

Uses and adaptations of participatory epidemiology Uses of PE-type activities between 1996 and 2010 are summarized in Table 3, and include (1) general surveys with local prioritization of diseases (e.g. Mochabo et al., 2005); (2) disease-specific epidemiological and economic studies (e.g. Barasa et al., 2008); (3) disease modelling (e.g. Mariner et al., 2005); (4) analysis of disease-specific control options (e.g. Grace, 2003); (5) assessments of the impact of veterinary service providers (e.g. Bekele and Akuma, 2009); and (6) active surveillance for foot-and-mouth disease (e.g. Admassu, 2005). When used for disease investigation, PE was useful for understanding the complex aetiology of diseases such as ‘chronic wasting’ in cattle in South Sudan (Catley et al., 2001, 2002b), or the uncertain aetiology of other diseases such as the chronic form of foot-and-mouth disease in cattle (Catley et al., 2004). In the Horn of Africa and Pakistan, PE was used to support rinderpest eradica-

tion (Mariner and Roeder, 2003; Mariner et al., 2003), and in South East Asia and other regions ‘participatory surveillance’ was integrated into programmes to control HPAI (Azhar et al., 2010). In Southern Africa, PE has been used to establish suitable times for vaccination against diseases, such as Newcastle disease, that tend to have a seasonal appearance (Alders and Spradbrow, 2001; Ahlers et al., 2009). Notably, over 15 years or so, the use of PE-type approaches expanded from East Africa to Pakistan, then South East Asia and Eastern Turkey. In part, the popularity of PE was made possible through support from international organizations such as the Food and Agriculture Organization of the United Nations, and the African Union Inter-African Bureau for Animal Resources, both of which published PE training materials (Mariner and Paskin, 2000; Catley, 2005) and supported government veterinary services. Some veterinary schools in Africa also started to teach PE, with postgraduate courses leading to various PE-based studies in Kenya (e.g. Eregae, 2003; Titus, 2003), Ethiopia (e.g. Gizaw, 2004), Nigeria (e.g. Idowa, 2005) and Sudan (e.g. Elnasri, 2005). In Pakistan, the introduction of participatory surveillance led to a series of publications on the epidemiology of peste des petits ruminants (Hussain et al., 2008; Zahur et al., 2008), foot-and-mouth disease (Anjum et al., 2006), and other diseases. Although researchers and practitioners have often described their work as PE, as we indicate in our working definition of PE, attention to a participatory approach was mixed.

Participatory epidemiology and the local relevance and impact of veterinary programmes Experiences with participatory approaches By including attention to a participatory approach in our working definition of PE, we propose that the active participation of communities in analyzing and prioritizing local disease problems,

Please cite this article in press as: Catley, A., et al. Participatory epidemiology: Approaches, methods, experiences. The Veterinary Journal (2011), doi:10.1016/j.tvjl.2011.03.010

A. Catley et al. / The Veterinary Journal xxx (2011) xxx–xxx Table 3 Veterinary uses of participatory epidemiology.a Use

Examples

General disease survey and/or prioritization of diseases

Various diseases, Somalia (Catley and Mohammed, 1996), South Africa (Getchell et al., 2002), Kenya (Mochabo et al., 2005; Bett et al., 2009), Mozambique (Alders et al., 2005), Nigeria (Idowa, 2005), Pakistan (Ali et al., 2006) Chronic wasting disease, South Sudan (Catley et al., 2001, 2002b) Heat intolerance syndrome, Tanzania (Catley et al., 2004) Tick infestation and tick-borne disease, Somalia (Catley and Aden, 1996) Contagious bovine pleuropneumonia, Ethiopia Gizaw, 2004) Bovine trypanosomosis, Sudan (Elnasri, 2005) Foot-and-mouth disease, Pakistan (Anjum et al., 2006) Various diseases, Madagasgar (Nzietchueng et al., 2006a) Peste des petits ruminants, Pakistan (Hussain et al., 2008; Zahur et al., 2008) Contagious caprine pleuropnemonia, Ethiopia (Mekuria et al., 2008) Foot-and-mouth disease, Ethiopia (Rufael et al., 2008; Shiferaw et al., 2010) Rift Valley fever, Kenya and Tanzania (Jost et al., 2010) Various diseases, Kenya (Mochabo et al., 2006) Malignant catarrhal fever, Kenya (Bedelian et al., 2007) Foot-and-mouth disease, South Sudan (Barasa et al., 2008) Bovine trypanosomosis, Kenya (Catley et al., 2002a) and Burkina Faso (Grace, 2003) Vector-borne diseases, Uganda (Mugisha et al., 2008) Control of various diseases by vaccination, Ethiopia (Catley et al., 2009) General issues (Ashley-Robinson et al., 2003; Nzietchueng et al., 2006b); bovine tuberculosis, Africa (Etter et al., 2006); food safety and risk assessment (Grace et al., 2008) Rinderpest, Somalia and Kenya (Mariner and Roeder, 2003) and Pakistan and central Asia (Jost et al., 2007) Foot-and-mouth disease, Turkey (Admassu, 2005) Highly pathogenic avian influenza, Indonesia (Azhar et al., 2010) Rinderpest, East Africa (Mariner et al., 2005) Contagious bovine pleuropneumonia, East Africa (Mariner et al., 2006a, 2006b) Community-based animal health workers, Ethiopia (Admassu et al., 2005) and Kenya (Bekele and Akuma, 2009) Business planning for private veterinary practice, Kenya (Eregae, 2003)

Disease investigation and diagnosis

Descriptive epidemiology

Economic or livelihoods impact of disease

Evaluation of disease control methods

Veterinary public health

Active surveillance

Disease modelling

Evaluation of veterinary service delivery Economics of veterinary service delivery

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on joint analysis (Leyland, 1996). In addition, the process needs to focus on community-defined priorities as soon as possible. This approach contrasts with much conventional research, in which local people are expected to commit time and effort to answering questions posed by outsiders, on topics which are of limited interest to them. Using a participatory approach, there seems to be a lower risk of informants consciously offering incorrect or misleading information because the topic under discussion is a local priority. There are very few papers in the veterinary literature which aim to measure if or how the type of community participation affects programme outcomes. However, one example is the comparison of ‘active participation’ in rinderpest eradication in East Africa, with more ‘passive participation’ in communitybased tsetse control programmes (Catley and Leyland, 2001), and with better disease control outcomes reported for the rinderpest programme. More generally, there have been calls for veterinary researchers to work towards the active participation of farmers in disease control (e.g. Huhn and Baumann, 1996). Has PE improved animal disease control and human welfare? The expanding use of PE demonstrated the flexibility of participatory methods and the relevance of the methods in resourcepoor settings. After many years of decline in government veterinary services in developing countries, PE seemed to play an important role in helping researchers and government epidemiologists to re-connect with livestock keepers and gain a better understanding of diseases from a local perspective. What is far less evident is the extent to which these activities led to improved disease control, with related benefits for people. Other than the successes of the global rinderpest eradication campaign where PE contributed to programmes in East Africa and Pakistan, and some CAHW programmes, there are few examples in the literature where research or surveillance using PE resulted in more successful disease control. This observation is partly explained by various policy and institutional issues which constrain government veterinary services in developing countries; these services frequently have limited organizational capacity to use evidence-based epidemiological and economic approaches to revise disease control policies. Although a detailed analysis of these constraints is beyond the scope of this review, in the case of trans-boundary animal diseases the objective of national disease eradication still dominates policy debates. In contrast, a body of conventional and PE research indicates a need to reshape policy objectives towards reducing disease impacts on trade and human livelihoods, and the various ways to achieve these objectives without disease eradication (Thomson et al., 2004; Scoones and Wolmer, 2006; Barasa et al., 2008; Rossiter and Al Hammadi, 2009; Scoones et al., 2010). The limited impact of activities described as PE also relates to the limited use of participatory approaches. Challenges with the use of participatory approaches

a

The papers listed in this Table refer to the use of ‘participatory’ epidemiology, surveillance, approaches or methods. This does not mean that the definition or use of ‘participatory’ in these publications is the same as the working definition of participatory epidemiology proposed in this review, especially in relation to the use of a participatory approach.

and their involvement in the design and implementation of research, surveillance or disease control activities is critical to achieving relevant and sustained benefits. At the initial stage of a participatory process, the relationship between researchers or practitioners and community members should be based on a common understanding of the objectives of the process, and emphasis

The notion of a participatory approach raises challenges for large-scale disease control and surveillance systems if the priorities of livestock keepers differ from those of national or international policy makers. For example, rural smallholder farmers in some parts of South East Asia might prioritize the ownership and use of water buffaloes, pigs and goats, over poultry. Participatory surveys might then reveal a local preference to access preventive or curative veterinary care for the larger livestock species, but also, the survey might show problems with accessing this service. In this context, if a national HPAI eradication programme was introduced based on the slaughter of affected poultry with no compensation, it is doubtful that it would receive support at community level. Not

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only would such a programme ignore local priorities, it would deter local reporting of diseased poultry due to the negative economic consequences for the individual poultry owner. In this and similar situations, ‘participatory surveillance’ will be hindered by the contrasting objectives of poultry owners and national or district-level government veterinarians (Azhar et al., 2010).

Could the use of PE approaches in the developed world improve disease control? The uses of PE approaches in veterinary and rural science have been almost entirely restricted to the developing world. However, animal disease control in the developed world is frequently suboptimal. Control is often implemented in situations where there is a lack of knowledge of farmer or owner attitudes, and where there is limited formal engagement with the farmer or owner sector (other than through central bodies, which themselves may suffer a lack of engagement from the stakeholders that they are meant to represent). This can lead to mistrust between statutory bodies and farmers (Palmer et al., 2009; Floyd, 2009), and in statutory programmes, no understanding of the potential impact of non-compliance. Recent and obvious examples, just in the UK, include the continued spread of bovine tuberculosis (bTB) through cattle herds, especially in the South West, and the long epidemic tail of transmission of foot-and-mouth disease, particularly in North Yorkshire in the summer of 2001. These examples are discussed below. In the case of bTB in the UK, the ongoing transmission of the disease in cattle is costing the taxpayer around £100 M1 per annum, with farmers carrying additional costs. The reasons for persistence remain unclear, although there have been huge challenges with interpreting the only controlled study, the randomized badger control trial. This trial examined the role of the badger reservoir in the incidence of cattle herd breakdowns, but the timing of the effects of different types of badger culling suggests that altered farmer behaviour may have played a role (Godfray et al., 2004). The use of formal participatory approaches to understand the range of farmer attitudes and approaches to the control of bTB could provide valuable insights that the political stances of farming and veterinary organizations do not. In 2001, the long tail of the epidemic of foot-and-mouth disease was only brought under control through stringent controls involving the army, and a ‘Blue Box’ approach with heightened biosecurity enforced. Why was it that the tail persisted as it did here, but did not in or around other regions earlier in the epidemic? Did farmer attitudes and ‘biosecurity fatigue’ contribute? What are the lessons for cost-efficient disease control in the future? Again, the lack of formal participatory studies of farmer attitudes at different stages of the 2001 epidemic means that many useful lessons for future epidemic control were missed. In a third example from the UK, the government has worked with equine industry parties to develop a contingency plan for a possible incursion of African horse sickness. However, one thorny issue has been whether the compulsory slaughter of infected horses could ever aid the control of the disease. Here the concern is that horse owners would panic at the prospect of both a deadly disease and a deadly response, leading to the widespread illegal movement of horses that might spread the disease further. A formal participatory epidemiological investigation to describe and quantify the range of owners’ attitudes and reactions to this situation might provide real insight ahead of any epidemic, and so contribute to a control strategy that achieves a required level of compliance. 1

£1 = approx. US$1.60; €1.16 at 11 March 2011.

These examples from the UK are not isolated cases, and illustrate the types of communication, trust and relationship gaps between veterinary authorities and animal owners that are also evident in other developed countries, such as the Netherlands (Elbers et al., 2009) and Australia (Palmer et al., 2009). Participatory epidemiology has a clear role to play in the developed world by strengthening broad stakeholder involvement in the analysis of disease problems, and can ensure that veterinarians understand the perspectives and priorities of farmers and other interest groups, and vice versa. Disease control strategies that are jointly designed are likely to result in stronger trust between actors, required levels compliance, and ultimately, better impact on human and animal welfare.

Conclusions During the last 10 years or so, PE has grown into a flexible approach for improving understanding of animal diseases in marginalized, resource-poor areas, and for working with communities to identify locally-appropriate disease control options (Thrusfield, 2005). Whereas PRA is a multidisciplinary approach to working with communities to address a range of local problems, PE has developed specifically around animal disease constraints and has adapted PRA methods accordingly. Unlike PRA, the development of PE has also included areas of adaptation such as more systematic use of methods, across-method triangulation, more statistical analysis, and the use of PE-derived data for novel diagnostic, epidemiological and economic studies (Catley et al., 2001, 2004; Mariner et al., 2005, 2006a, 2006b; Barasa et al., 2008). It seems clear that PE and approaches such as participatory disease searching have helped government veterinarians and epidemiologists in some countries to re-engage livestock rearing communities with new attitudes and new methods, leading to a better understanding of how and why livestock keepers prioritize diseases. However, a very important issue that needs to be directly addressed at the institutional level is the capacity of government veterinary services and international bodies to respond to PEbased research findings which challenge existing disease control or eradication policies. Related to this challenge is the mixed interpretation of community participation and a ‘participatory approach’, and the risk of using approaches such as participatory research or participatory surveillance simply to co-opt livestock keepers into new programmes. With the emergence of global HPAI programmes from the late 1990s, PE risks being regarded as an adjunct to national surveillance systems which aim to meet the objectives of the veterinary establishment and international actors, rather than the priorities of poor livestock keepers in developing countries. Ultimately, community participation in this kind of process will be limited and surveillance systems are unlikely to work effectively during projects, or be sustained when external funding is withdrawn. The current global economic slow-down reinforces the challenge to all countries to ensure that they must utilize their available resources optimally. Flexible PE approaches could be far more widely used to ensure that disease control programmes have the support of national and local animal owning communities.

Conflict of interest statement None of the authors of this paper has a financial or personal relationship with other people or organisations that could inappropriately influence or bias the content of the paper.

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Please cite this article in press as: Catley, A., et al. Participatory epidemiology: Approaches, methods, experiences. The Veterinary Journal (2011), doi:10.1016/j.tvjl.2011.03.010