Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

HDSS Ethics: Getting a Lay of the Land - Project Update

Most countries in Africa lack effective civil registration systems. This means that many people in these countries live and die without important data about their lives being collected. In the absence of these data, the planning and implementation of various health and social programmes can be difficult.
A Health and Demographic Surveillance System longitudinally monitors births, deaths, pregnancy outcomes, migrations and other vital events in a geographically defined population. There are about 40 HDSS sites in sub-Saharan Africa.
Methodologically, HDSS occupy a grey area between research, health care and public health practice. In addition, there is paucity of empirical research and guidelines on HDSS ethics. Therefore, it’s not clear how ethical issues for HDSS should be addressed.
The main objective of my GHBN research project is to describe HDSS sites and to map out the ethical issues they face.
To achieve this objective, I have reviewed the existing literature and unpublished documents, conducted individual interviews, observed surveillance activities and held informal discussions with HDSS research stakeholders.
Despite sharing a methodological approach, HDSS sites in sub-Saharan Africa have important differences based on the rationale for their establishment, location, type of additional data collected and characteristics of the populations they follow-up.
Many sites were initially set up to support clinical trials, one-time population surveys or surveillance of specific populations. For instance, the Navrongo HDSS traces its roots to a trial that investigated the impact of Vitamin A Supplementation on child survival while establishment of the Nairobi Urban HDSS was informed by a cross sectional survey of a representative sample of Nairobi slum.
HDSS sites were established, developed and continue to operate through international collaborations and partnerships. Locally, HDSS stakeholders include community members, ministries of health, research centres and universities. Funders, research centres and universities from Denmark, France, Japan, Sweden the United Kingdom and USA have significantly supported the establishment and running of HDSS sites in sub-Saharan Africa.
Within Africa, HDSS sites are located in the Eastern, Western and Southern regions of the continent. Many countries in Central Africa don’t have HDSS sites. A study using satellite imagery showed that current sites span all the major environmental zones in Africa. Individual HDSS sites only cover a relatively small population and region within a country. However, a study using statistical modelling, showed that the sites were representative of the wider environmental and socioeconomic conditions of the countries in which they were located.
For a HDSS to be a full member of the INDEPTH Network, it needs to regularly collect data on births, deaths, migration, pregnancy and verbal autopsy. It also needs to demonstrate availability of funding to support surveillance for at least one year. Sites that do not meet these criteria are classified as associate members. Inability to conduct verbal autopsies and lack of funds to support regular data collection are the main reasons for demotion of sites from full to associate members of INDEPTH.
Consent for collection of routine HDSS data is commonly obtained from a knowledgeable member of the household. The consent can be verbal or written. Overall, consenting processes vary between HDSS sites even for collection of the same type of data.
In the literature, the value of HDSS is seen through the lens of nested studies e.g vaccine development and long-term community benefits. However, my observations of surveillance and discussions with stakeholders revealed that HDSS may have direct individual benefits that are “hard to measure”. These include positive feelings associated with being visited or achieving closure from talking about the death of a loved one. The longitudinality of HDSS and the large populations involved can make it difficult to provide benefits sustainably.
The GHBN project has enabled me to describe HDSS sites and to map out ethical issues. These ethical issues are around consenting, community engagement, benefits and data sharing, governance and accountability. The verbal autopsy has emerged as an important area that I will explore in more depth during the remaining stages of my PhD study. I have learned a lot about the case study research method, gained experience in sharing my work and received valuable feedback from members of GHBN. In the next few months, I will be writing a research article on ethical issues for HDSS sites in sub-Saharan Africa.

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Comment by Dina Rippon on November 28, 2017 at 8:59

Dear Alex, thank you for such a detailed summary of your project! You certainly have done a lot of work this past year - congratulations on all you've achieved. Did you experience any challenges along the way, or has work progressed quite smoothly for you? Good luck with the research article you are writing. Do let us know how you get on with it and reach out if you need any feedback. Once again, thanks for this summary!

Comment by Noni Mumba on December 21, 2017 at 5:24

Dear Alex, this is really great work. Good to see that you are progressing so well with this project. All the best with the rest of it!

Comment by Michael Parker on December 21, 2017 at 7:49

Hi Alex. It's a great project. I really like the idea of looking at the ethical aspects of an activity that fall on the boundaries between research, clinical practice, and health service delivery. I think that in the future a lot more of the way health is done is going to take something of this form and I think the findings from your study have the potential to make a really important contribution to the debate. I can't wait to hear more.

Comment by Alex Nginyo Hinga on December 22, 2017 at 15:34

Thank you all for your encouraging comments. @Dina, HDSS are really dynamic interventions; the frequency of data collection, objectives, population size etc changes often. Therefore, I initially found it difficult to describe the current functioning of a HDSS site without explaining its context and history. For instance, the question "how often do you visit households to collect HDSS data?" would get a response such as " Currently we have six-monthly visits but last year we visited households every 3 months". My study involves all the HDSS sites in sub-Saharan Africa, accessing these sites required significant coordination between multiple stakeholders.

I addressed these and other challenges with the guidance of my supervisors - Sassy and Vicki. For instance, the changes in frequency of data collection, number of staff... point to various underlying issues such as HDSS funding, sustainability, concerns about study fatigue and integration of HDSS with other data sources. The South African Population Research Infrastructure Network (SAPRIN) is a good example of how HDSS sites are being redesigned > http://saprin.samrc.ac.za/ . GHBN members, especially Paulina, Nicola and Janet helped me a lot in identifying and accessing HDSS sites for data collection.

I faced challenges Dina but due to the excellent support of my supervisors, other colleagues at KEMRI and the GHBN, I successfully addressed the challenges. Thank you!

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