Establishing a HDSS | Have the HDSS area and populations been selected fairly? The need for collaborative partnerships. | |
HDSS methodological design | What are the objectives of the HDSS and how effective is the HDSS in meeting these objectives? | Unclear objectives, including that initial objectives of most HDSS have not been updated despite changes in HDSS functioning over time. Risks of collecting incomplete or inaccurate data for example, where insufficient funding and cultural sensitivities may hinder regular enumerations and collection of accurate data on income, pregnancy status and cause of death.
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Ethics review processes | What ethical principles, theories and guidelines apply to the HDSS? | |
Community engagement | Is community engagement necessary? What community engagement activities are feasible/appropriate? | Use of poorly defined concepts, such as ‘HDSS community’ and insufficient resources for HDSS-specific community engagement, leading to risks that community engagement is unduly limited for example, information sharing only.
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Informed consent | Respect for individual autonomy and local community | Tensions between individual autonomy and enhancing social value, where individual written informed consent processes likely to compromise HDSS data quality and increase HDSS operating costs and burdens for residents and field workers (eg, interpretations of why a signature is needed may lead to refusals). Procedures and feasibility of withdrawing from HDSS are unclear, which may limit this choice.
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Data sharing and reporting Results | What are the appropriate HDSS data governance systems? Who should access and use HDSS data? | HDSS collect, link, analyse and disseminate a wide range of sensitive data, generating potential risks to privacy and confidentiality including community stigmatisation from reporting sensitive community-level findings Risk of damaging trust among HDSS stakeholders Limited use of HDSS data
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Benefits and burdens | What are the benefits of HDSS and who are the beneficiaries? What are the burdens of HDSS? Can they be minimised? Are burdens justified? | Risks of defining benefits narrowly, so that non-health benefits and beneficiaries of HDSS are unspecified Inability to measure and enhance benefits or identify, weigh and respond to HDSS burdens. Female residents, verbal autopsy respondents and interviewers often bear most burdens (time, insecurity, emotional distress) and little to no benefits. Since HDSS data are mainly used for research purposes, researchers and global health modellers who gain direct benefits from using HDSS data (influence, career development, funding) bear the least burdens. Overall risks of a disproportionate distribution of burdens.
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