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Decision-makingThe potentials of involvingcommunities in health researchArticle by Selemani S Mbuyita“…We live, after all, in a world of increasing polarization of power and wealth into North and South, intooverclasses and underclasses. Materially, those in the overclasses have more and more, and are increasinglylinked by instant communications. At the same time, the numbers in the underclasses of absolute povertycontinue to rise. Among them, many millions have less and less, and remain isolated both from theoverclasses and from each other. Almost by definition, the poor and powerless have no voice. It may bepolitically correct to say that they should be empowered and their voices heard. But cynical realists will pointto inexorable trends, vested interests and pervasive self-interest among the powerful, and argue that littlecan be changed” (Robert Chambers, Whose Voice?).For anyone who has been in research and applied any ofthe many b ranches of participatory research methods,turning back to the conventional empiricist surveyapproaches or any other “quick and dirty” data collectiontechniques would be difficult. The facts revealed, theknowledge acquired and the skills unveiled from the peoplein communities where the research process is implemented,differentiate distinctly participatory research (that involvescommunities) from other research methodologies.Literally, participation can be defined in different ways.However, in general terms the concept of participation reflectsthe action of taking part in an activity. People “participate” inlocal development every day through their family life,livelihood activities and community responsibilities. Thedegree of control that men and women have over theseactivities varies. The same holds true for initiatives that areinitiated or involve “outsiders” such as research projects,development programmes or advocacy campaigns 2 .The potential of participatory research comes from theresearched people as active analysts of the researchedsubjects. With participatory research, solutions to researchquestions come from the people supported with data, andnot from data supported by trained data analysts.Interventions and/or programmes developed using data fromthe first scenario are more reliable, feasible and sustainablein their implementation than the latter. Historically, healthpolicies that have been designed without a communityLiterally, participation can be defined in different ways.However, in general terms the concept of participationreflects the action of taking part in an activity. People“participate” in local development every day throughtheir family life, livelihood activities and communityresponsibilitiesparticipatory approach, some of which have acquired a globalattention, often have failed to solve people’s health problems.The trend will be the same and the vicious cycle maintainedunless the participatory research community can succeed toshow, demonstrate, convince and prove to local and globalhealth policy-makers that participatory research has thepotential to solve many of our health problems.To address these concerns, special attention has been paidfor the past few decades to the development and analysis ofparticipatory research methods. One stream of participatoryresearch, with new inventions, evolved as a family ofapproaches and methods known as Participatory RuralAppraisal (PRA). As PRA evolved, it soon became evident thatit had applications for policy. Thematic and sectoral studieswere carried out and resent as reports to decision-makers,sometimes within only days or weeks of the field work. TheWorld Bank, through trust funds from bilateral donors,initiated Participatory Poverty Assessments (PPAs). Some ofthese used PRA methods to enable poor people to expresstheir realities themselves. The insight from these thematicstudies was striking, convincing and unexpected. However, itwas (and still is) too scattered and/or fragmented for fullmutual learning or for its significance to be fully seen 3 .Health programmes that were later proposed andimplemented worldwide, with elements of involvingcommunities in their implementation had their roots inevidence revealed by participatory research. Today, weidentify programmes and interventions such as School HealthProgrammes, Community Based Health Initiatives etc. thatwere designed to respond to unveiled potentials ofbeneficiaries’ involvement in such programmes. For example,the concepts of the Health-Promoting School and ofComprehensive School Health Education and Promotion, asdiscussed and defined by WHO, have highly consideredparticipation concepts 1 . Partly, this programme aims tocounter the views adults and teachers commonly hold ofchildren and young people as ignorant-to be taught;176 ✜ Global Forum Update on Research for Health Volume 4
Decision-makingirresponsible-to be disciplined; immature-to be brought up;incapable-to be protected; a nuisance-to be seen and notheard; or a resource-to be made use of 7 . Participatoryresearch, resulting in participatory data to generateparticipatory solutions through participatory interventionsand/or programmes, were demonstrated to be successful inaverting and/or changing such views.Community involvement in health research and in otherdomains of development is a strong tool towards suchchange. It helps to teach those who hold such views andperceptions that they can learn a lot from children, poorpeople, and unschooled and illiterate men and women – thatthere is much to appreciate, so many skills to acquire andadopt. Learning such lessons is important if our research is tobring positive effects and make a difference. These realitiesare easily seen once one gets involved in the process ofparticipatory research.The following sets of questions and case studies will helpto demonstrate the potential of applying communityparticipation in health research, and will help bring everybodyaboard – including those with practical experiences ofparticipatory research in health and those without. Indeed,they might assist in changing even those cynical realists whousually point to inexorable trends, vested interests andpervasive self-interest among the powerful, and who arguethat little can be changed.What does participatory health researchlook like?Most of us have some understanding of what it means to useparticipatory approaches in health but how to make it happenmay be less clear. There are some basic principles to usingparticipatory methods:1. Local people are creative and capable of undertakingtheir own investigations, analyses and planning.2. Outsiders (field workers, facilitators, researchers etc.)have a role as facilitators of this process.3. Local people can and should be empowered to solvetheir own problems themselves 4 .This means that, when conducting health research using aparticipatory approach the method:1. should not only extract information from people, butshould also recognize local knowledge and make use of it;2. should not end at collecting data but, should stimulate aprocess that would discuss issues identified from the data;3. should not try to create solutions to the identified issues,but rather involve the people themselves to formulateideas and initiatives to solve their own problems.Due to its nature of involving people, methods applyingcommunity participation are usually intertwined; issuesraised are of time taken, expectations aroused and whoserealities are expressed.As a result, participatory research is time-consuming. Themethods used, especially the visual ones like mapping,diagramming and matrices, tend to be fun and engagepeople’s full attention.Expectations are liable to be raised. After being helped toanalyze their conditions, problems and opportunities, peopleoften expect action 3 . Unfortunately, many research activitiesend at this point, instead of proceeding two steps furtherwhere planning for action and follow-up would actually beinstituted.Throughout the process of community participation inhealth research, transparency must be maintained. Outsideresearchers should make clear from the start who they are,what they are doing, and why, and what can and cannot beexpected.Can every health research question beanswered using participatory research?The classical classification of research is usually very wide.Some research questions traditionally have been associatedonly with specific research design and methods. For example,a malaria vaccine trial typically would be seen toappropriately require a clinical trial design. However, it ispossible to argue that, participatory methods are alsoThe experience of this participatory approach to themalaria trials was that some of the issues raised byinvolving the community at that early stage of theproject had not been well thought out nor understoodin advanceimportant to answer questions in clinical trials. For example,in preparing for a malaria vaccine trial in Bagamoyo,Tanzania, a component applying participatory researchmethods was included for introducing the study objectivesand creating awareness within the community in the studyarea. It also helped to extract information about people’sexpectations, worries and fears and increase the readiness ofthe research project to address individual and communityconcerns before the vaccine was introduced. Theparticipatory research component also helped to solicitpeople’s views (from the people who would later be the activeparticipants of the process) on how best to make the project,and ultimately the vaccine intervention, a success.The experience of this participatory approach to the malariatrials was that some of the issues raised by involving thecommunity at that early stage of the project had not been wellthought out nor understood in advance – and actually couldnot have been known by “professionals”. Had the trialsproceeded without this process, the existing “knowledge”would definitely have misled the trial.This example, and others that can be sited, support theargument that participatory research in health can be appliedto a wide range of research questions, including those thatusually seem to be too scientific to involve local people.However, the nature of the participation of various partners inthe research process (local people, key community persons,community leaders, political leaders etc.) varies with thenature of the study, research design and scope of workinvolved in the research process.Global Forum Update on Research for Health Volume 4 ✜ 177
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Contents096 Child immunization: acc
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IntroductionResearch contributions
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IntroductionType IType IIType IIIPr
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Introductionmaking), takes account
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Access to healthStrengthening healt
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Access to healthReferences1.Further
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Access to healthDeterminantsAvailab
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Access to healthCombining health an
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Access to healthReferences continue
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Access to healthintegrating individ
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Access to healthA social determinan
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Access to healthemployment conditio
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Access to healthMaking human rights
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Access to healthResources outsideth
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Access to healthReferences1.McCoy D
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Access to healthand financial burde
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Access to healthDiscrimination as a
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Access to health“Two months ago I
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InnovationFinancing of vaccine R&D-
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InnovationDeveloping countries % De
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Innovationcapacities. It is indeed
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Innovationwhere he was a programme
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Research resourcesResearch impact o
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Research resourcesBiotechnologists6
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Research resources1,61001,41,219080
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