Designing digital qualitative research workflows : enabling stakeholder participation across all research stages

PhD ThesisParticipatory research approaches are increasingly being used by practitioners – academics, civil society organisations, and citizens – to inform decision-making processes where participants contribute to idea generation and data capture, but less often to data analysis and dissemination. This can leave participants feeling ineffectual and unrepresented in the research output as analytical decisions made on their contributions are opaque. Digital tools offer opportunities to enhance qualitative practices but are often designed for academics and primarily for data analysis, which can limit participation and adoption by other practitioners. In response, this thesis explores the design of digital tools to structure inclusive participation across all stages of qualitative research. Through synthesizing literature on the qualitative practices of practitioners, a cross-cutting qualitative workflow is defined that introduces design considerations to overcome existing barriers to participation. An action research approach was taken across three case studies that iteratively designed digital prototypes to explore how technology can augment this workflow. Design insights from this informed the development of Gabber, a digital platform that encompasses the end-to-end qualitative workflow that prioritises interactions with audio media to lower existing barriers of participation in each workflow stage. Following this, two distinct case studies configured and used Gabber across the workflow where observations of platform use, and semi-structured interviews surfaced opportunities and challenges around transparency of participation and stakeholder engagement across the workflow. This thesis’ primary contributions are a conceptualisation and real-world empirical exploration of a digital qualitative workflow across five case studies that augment and examine the qualitative practices of practitioners. Across this research, practitioners wanted to understand who and how their contributions were engaged with. This informed the secondary contribution, design implications for digital tools to leverage paradata to improve process transparency and demystify decision-making processes for stakeholders involved

Exploring the Role of Paradata in Digitally Supported Qualitative Co-Research

Academics and community organisations are increasingly adopting co-research practices where participants contribute to qualitative data collection, analysis, and dissemination. These qualitative practices can often lack transparency that can present a problem for stakeholders (such as funding agencies) who seek evidence of the rigour and accountability in these decision-making processes. When qualitative research is done digitally, paradata is available as interaction logs that reveal the underlying processes, such as the time spent engaging with different segments of an interview. In practice, paradata is seldom used to examine the decisions associated with undertaking qualitative research. This paper explores the role of paradata arising from a four-month engagement with a community-led charity that used a digital platform to support their qualitative co-research project. Through observations of platform use and reflective post-deployment interviews, our findings highlight examples of paradata generated through digital tools in qualitative research, e.g., listening coverage, engagement rate, thematic maps and data discards. From this, we contribute a conceptualisation of paradata and discuss its role in qualitative research to improve process transparency, enhance data sharing, and to create feedback loops with research participants

Comprehensive Pan-Genomic Characterization of Adrenocortical Carcinoma

SummaryWe describe a comprehensive genomic characterization of adrenocortical carcinoma (ACC). Using this dataset, we expand the catalogue of known ACC driver genes to include PRKAR1A, RPL22, TERF2, CCNE1, and NF1. Genome wide DNA copy-number analysis revealed frequent occurrence of massive DNA loss followed by whole-genome doubling (WGD), which was associated with aggressive clinical course, suggesting WGD is a hallmark of disease progression. Corroborating this hypothesis were increased TERT expression, decreased telomere length, and activation of cell-cycle programs. Integrated subtype analysis identified three ACC subtypes with distinct clinical outcome and molecular alterations which could be captured by a 68-CpG probe DNA-methylation signature, proposing a strategy for clinical stratification of patients based on molecular markers

CO2 and H2O: Understanding Different Stakeholder Perspectives on the Use of Carbon Credits to Finance Household Water Treatment Projects.

Background Carbon credits are an increasingly prevalent market-based mechanism used to subsidize household water treatment technologies (HWT). This involves generating credits through the reduction of carbon emissions from boiling water by providing a technology that reduces greenhouse gas emissions linked to climate change. Proponents claim this process delivers health and environmental benefits by providing clean drinking water and reducing greenhouse gases. Selling carbon credits associated with HWT projects requires rigorous monitoring to ensure households are using the HWT and achieving the desired benefits of the device. Critics have suggested that the technologies provide neither the benefits of clean water nor reduced emissions. This study explores the perspectives of carbon credit and water, sanitation and hygiene (WASH) experts on HWT carbon credit projects. Methods Thirteen semi-structured, in-depth interviews were conducted with key informants from the WASH and carbon credit development sectors. The interviews explored perceptions of the two groups with respect to the procedures applied in the Gold Standard methodology for trading Voluntary Emission Reduction (VER) credits. Results Agreement among the WASH and carbon credit experts existed for the concept of suppressed demand and parameters in the baseline water boiling test. Key differences, however, existed. WASH experts’ responses highlighted a focus on objectively verifiable data for monitoring carbon projects while carbon credit experts called for contextualizing observed data with the need for flexibility and balancing financial viability with quality assurance. Conclusions Carbon credit projects have the potential to become an important financing mechanism for clean energy in low- and middle-income countries. Based on this research we recommend that more effort be placed on building consensus on the underlying assumptions for obtaining carbon credits from HWT projects, as well as the approved methods for monitoring correct and consistent use of the HWT technologies in order to support public health impacts

CO2 and H2O: Understanding Different Stakeholder Perspectives on the Use of Carbon Credits to Finance Household Water Treatment Projects.

BackgroundCarbon credits are an increasingly prevalent market-based mechanism used to subsidize household water treatment technologies (HWT). This involves generating credits through the reduction of carbon emissions from boiling water by providing a technology that reduces greenhouse gas emissions linked to climate change. Proponents claim this process delivers health and environmental benefits by providing clean drinking water and reducing greenhouse gases. Selling carbon credits associated with HWT projects requires rigorous monitoring to ensure households are using the HWT and achieving the desired benefits of the device. Critics have suggested that the technologies provide neither the benefits of clean water nor reduced emissions. This study explores the perspectives of carbon credit and water, sanitation and hygiene (WASH) experts on HWT carbon credit projects.MethodsThirteen semi-structured, in-depth interviews were conducted with key informants from the WASH and carbon credit development sectors. The interviews explored perceptions of the two groups with respect to the procedures applied in the Gold Standard methodology for trading Voluntary Emission Reduction (VER) credits.ResultsAgreement among the WASH and carbon credit experts existed for the concept of suppressed demand and parameters in the baseline water boiling test. Key differences, however, existed. WASH experts' responses highlighted a focus on objectively verifiable data for monitoring carbon projects while carbon credit experts called for contextualizing observed data with the need for flexibility and balancing financial viability with quality assurance.ConclusionsCarbon credit projects have the potential to become an important financing mechanism for clean energy in low- and middle-income countries. Based on this research we recommend that more effort be placed on building consensus on the underlying assumptions for obtaining carbon credits from HWT projects, as well as the approved methods for monitoring correct and consistent use of the HWT technologies in order to support public health impacts

Gabber

We describe the iterative design, development and learning process we undertook to produce Gabber, a digital platform that aims to support distributed capture of spoken interviews and discussions, and their qualitative analysis. Our aim is to reduce both expertise and cost barriers associated with existing technologies, making the process more inclusive. Gabber structures distributed audio data capture, facilitates participatory sensemaking, and supports collaborative reuse of audio. We describe our design and development journey across three distinct field trials over a two-year period. Reflecting on the iterative design process, we offer insights into the challenges faced by non-experts throughout their qualitative practices, and provide guidance for researchers designing systems to support engagement in these practices

CO₂ and H₂O: Understanding Different Stakeholder Perspectives on the Use of Carbon Credits to Finance Household Water Treatment Projects

<div><p>Background</p><p>Carbon credits are an increasingly prevalent market-based mechanism used to subsidize household water treatment technologies (HWT). This involves generating credits through the reduction of carbon emissions from boiling water by providing a technology that reduces greenhouse gas emissions linked to climate change. Proponents claim this process delivers health and environmental benefits by providing clean drinking water and reducing greenhouse gases. Selling carbon credits associated with HWT projects requires rigorous monitoring to ensure households are using the HWT and achieving the desired benefits of the device. Critics have suggested that the technologies provide neither the benefits of clean water nor reduced emissions. This study explores the perspectives of carbon credit and water, sanitation and hygiene (WASH) experts on HWT carbon credit projects.</p><p>Methods</p><p>Thirteen semi-structured, in-depth interviews were conducted with key informants from the WASH and carbon credit development sectors. The interviews explored perceptions of the two groups with respect to the procedures applied in the Gold Standard methodology for trading Voluntary Emission Reduction (VER) credits.</p><p>Results</p><p>Agreement among the WASH and carbon credit experts existed for the concept of suppressed demand and parameters in the baseline water boiling test. Key differences, however, existed. WASH experts’ responses highlighted a focus on objectively verifiable data for monitoring carbon projects while carbon credit experts called for contextualizing observed data with the need for flexibility and balancing financial viability with quality assurance.</p><p>Conclusions</p><p>Carbon credit projects have the potential to become an important financing mechanism for clean energy in low- and middle-income countries. Based on this research we recommend that more effort be placed on building consensus on the underlying assumptions for obtaining carbon credits from HWT projects, as well as the approved methods for monitoring correct and consistent use of the HWT technologies in order to support public health impacts.</p></div