Background
Methods
Epidemiology and participation
Section | Study title | Topic, context, and objective of research | Citation |
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Defining the research goal | Physicians, engineers, and urban health. Theories of the hygiene movement in the nineteenth century [transl. MB] | – Early engineering in sanitation of urbanized areas (Germany) – Informing interdisciplinary planning | Hardy [36] |
Why is an Integrated Social-Ecological Systems (ISES) lens needed to explain causes and determinants of disease? A case study of Dengue in Dhaka, Bangladesh | – Research on and prevention of dengue (municipality of Dhaka, Bangladesh) – Demonstrating the relevancy of multi-level modelling | Chowdhury and Emdad Haque [18] | |
Engaging young adolescents in social action through photovoice: The Youth Empowerment Strategies (YES!) Project | – Report of an afterschool program on various health topics in an underserved population (schools and neighborhoods, California, USA) – Documenting social environments to tackle social action | Wilson et al. [37] | |
Photovoice: concept, methodology, and use for participatory needs assessment | – Unspecific needs assessment in vulnerable population (international examples) – Reporting the pros and cons of photovoice for data collection | Wang and Burris [38] | |
Defining the research question | Participatory epidemiology: Use of mobile phones for community-based health reporting | – Local outbreak assessments with mobile applications (e.g. H1N1 virus) (on local levels, USA) – Complementing existing monitoring systems by crowdsourcing | Freifeld et al. [30] |
Improving sampling and response rates in children’s health research through participatory methods | – Research on the health status of students in a school setting (municipality of New York City, USA) – Demonstrating a community-centered approach | Claudio and Stingone [39] | |
From asthma to AirBeat: community-driven monitoring of fine particles and black carbon in Roxbury, MA, USA | – Definition of local risk factors regarding asthma and air pollution (municipality of Roxbury, USA) – Integrating monitoring, communication and community education | Loh et al. [40] | |
Development of a consumer constructed scale to evaluate mental health service provision | – Co-research on (face) validity and reliability of measures in mental health (university setting, Australia) – Improving mental health outcomes and satisfaction measures | Oades et al. [41] | |
Local perceptions of cholera and anticipated vaccine acceptance in Katanga province, Democratic Republic of Congo | – Research on cholera prevention (province of Katanga, DR of Congo) – Investigating local and cultural attitudes and practices to enhance vaccination acceptance | Merten et al. [42] | |
Thinking outside the box: Aboriginal people’s suggestions for conducting health studies with Aboriginal communities | – Culturally safe epidemiology with aboriginal communities (Province of Ontario, Canada) – Developing adequate research instruments and recruitment strategies | Maar et al. [43] | |
Context and environment: the value of considering lay epidemiology | – Definition of risk for HCV infection among drug users (urban setting, Australia) – Accessing and synthesizing lay and expert knowledge | Olson and Banwell [28] | |
Community-based participatory research in the California Health Interview Survey | – State level interview survey on population health (California, USA) – Integrating local and population-based data | Brown et al. [44] | |
Reconsidering context | The social and cultural context of risk and prevention: food and physical activity in an urban aboriginal community | – Cultural sensitive research on diabetes prevention (NIDDM) with aboriginal communities (municipality of Melbourne, Australia) – Developing and implementing acceptable prevention strategies | Thompson et al. [45] |
A participatory evaluation model for healthier communities: developing indicators for New Mexico | – Context oriented indicator development (State of New Mexico, USA) – Introducing a participatory mindset into modelling | Wallerstein [46] | |
Culturally safe epidemiology: oxymoron or scientific imperative | – Co-defining the framework “culturally safe epidemiology” with First Nation communities, giving recommendations for usage (community-level, Canada) | Cameron et al. [47] | |
Citizen deliberation in setting health-care priorities | – Review on deliberation practices in health care (United Kingdom) – Acknowledging individual values/criteria for prioritizing in health care | Murphy [48] | |
Determinants of HIV, viral hepatitis and STI prevention needs among African migrants in Germany; a cross-sectional survey on knowledge, attitudes, behaviors and practices | – Assessment of knowledge, attitudes, behaviors, and practices in HIV, viral hepatitis, and STI with immigrants from sub-Saharan Africa (cities in Germany) – Creating an epidemiologic base of evidence for research and planning, community building and empowerment | Santos-Hövener et al. [49] | |
Synthesizing heterogeneous data | Community mapping and respondent-driven sampling of gay and bisexual men’s communities in Vancouver, Canada | – Assessment of gay/bisexual men networks (municipality of Vancouver, Canada) – Collecting data on social and sexual network characteristics | |
Neighborhood mapping and evaluation: a methodology for participatory community health initiatives | – Evaluation of an urban infant mortality prevention program (municipality of Baltimore, USA) – Applying various data sorts to fully examine the influence of local contexts on health outcomes | Aronson et al. [51] | |
The impact of regional and neighbourhood deprivation on physical health in Germany: A multilevel study | – Relationship between lower SES, unfavorable neighborhood conditions and individual health status (Germany) – Connecting area/neighborhood data with data on physical health | Voigtländer et al. [52] | |
Enabling methods for community health mapping in developing countries | – Complementary population data (municipality of Bo, Sierra Leone) – Developing a geographic information system | Ansumana et al. [53] | |
Managing the research process | Community engagement in epidemiological research | – Description of community engagement activities in the National Children’s Study (USA) with regard to service development – Integrating community engagement into various steps of the research process | Sapienza et al. [26] |
Community-based epidemiology: Community involvement in defining social risk | – Co-developing the “risk concept” to inform research practice (neighborhood level, USA) | Smith [54] | |
Development and implementation of a culturally sensitive cervical health survey: a community-based participatory approach | – Co-research on screening barriers in cervical health of Native Americans (Great Plains, USA) – Improving monitoring practices through a culturally sensitive approach | Smith et al. [55] | |
Disseminating findings | After epidemiological research: What next? Community action for health promotion | – Discussion of case studies on environmental health, HIV risk reduction, community betterment (neighborhood, Chicago) and other topics – Developing multidisciplinary networks and multimodal venues for communication and education | |
Emerging communication responsibilities of epidemiologists | – Comprehensive recommendations for developing communicative spaces for epidemiologists and public health practitioners | Sandman [57] | |
Dissemination as dialogue: Building trust and sharing research findings through community engagement | – Exploring social network characteristics for health outcomes among Black men and women living with HIV (municipality of Los Angeles, USA) – Creating a dialogical and adaptable knowledge dissemination strategy | McDavitt et al. [58] | |
Community dissemination and genetic research: moving beyond results reporting | – Defining quality criteria for knowledge dissemination in ethnic groups (Alaska and Seattle, USA) | Trinidad et al. [2] |
Defining the research goal
Defining the research question
Defining the population
Reconsidering context
Synthesizing heterogeneous data
Managing the research process
Disseminating findings
Aspects | Common epidemiologic practice | Participatory epidemiologic practice |
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Defining the research goal | – Identification of molecular, cell-level, individual, group-level, and environmental risk-factors – Identification of social and other determinants of health – Specific focus preferred | – Identification of individual, group-level, and environmental health promoting factors – Aims to change social and other determinants of health – Strives for comprehensiveness |
Defining the research question | – Driven by academic agenda, political imperatives, or unforeseeable events – Research object defined by professional system – Questions developed by scholarly persons | – Driven by group-level or local needs, political agenda, or unforeseeable events – Research subject defined by professional and lay system – Questions developed by scholars, practitioners, and/or lay persons |
Defining the population | – Statistically relevant attributes applied – Individual level criteria preferred – Social criteria applied (group level and higher levels) – Macrosocial criteria applied | – Socially and politically relevant attributes applied – Individual criteria may be considered – Relies on social criteria (group and local level preferred) – Macrosocial criteria maybe applied |
Reconsidering context | – Research on supranational, national, regional, and local level – Environmental, cultural, or social contexts may inform modeling – Multilevel modeling preferred | – Local level preferred, regional or state level may be considered – Environmental, cultural, or social contexts explicitly inform modeling – Ecological modeling preferred |
Synthesizing heterogeneous data | – Leading paradigm quantitative (complemented by qualitative methods) – Data collection and analysis oriented towards measurable factors – Specific validity criteria (granted by standardized methods) | – Leading paradigm qualitative (complemented by quantitative methods) – Data collection and analysis oriented towards local and/or systemic change – Specific validity criteria (granted by equitable research principles) |
Managing the research process | – Research is planned and driven by scholarly persons – Predefined research protocols applied – Stringent sequencing of steps ensures quality | – Research is planned and driven collaboratively – Recursively adapted research protocols applied – Adaptive sequencing of steps ensures quality |
Disseminating findings | – Various formats (scientific publications, reports, advisory services) – Implementation usually delegated (depending on mandate) | – Various formats (educational programs, community based initiatives, scientific publications, reports) – Implementation in practice (alongside research process) |
Discussion: advancing participatory epidemiology
Making use of existing data
Capacity building on the local level
Expanding the repertoire of methods
Applying multiple perspectives in data synthesis
Making explicit the theoretical foundation
Adding quality criteria
Limitations of the review
Conclusion
Key messages
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Participatory epidemiology is a conceptual framework to enrich methodology. It offers ways to better contextualize epidemiologic research and provides more detailed definitions of the population under study. It is useful for working with heterogeneous data. It facilitates collaborative practices and offers innovative ways to disseminate findings.
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Participatory epidemiology fosters dialogue and partnership in research by allowing various frames of reference. This results in evidence which is useful for both academic researchers and public health practitioners.