Moving from medical to health systems classifications of deaths:extending verbal autopsy to collect information on the circumstances of mortality

Background:Verbal autopsy(VA)is a health surveillance technique used in low and middle-income countries to establish medical causes of death(CODs)for people who die outside hospitals and/or without registration.By virtue of the deaths it investigates,VA is also an opportunity to examine social exclusion from access to health systems.The aims were to develop a system to collect and interpret information on social and health systems determinants of deaths investigated in VA.Methods:A short set of questions on care pathways,circumstances and events at and around the time of death were developed and integrated into the WHO 2012 short form VA(SF-VA).Data were subsequently analysed from two census rounds in the Agincourt Health and Socio-Demographic Surveillance Site(HDSS),South Africa in 2012 and 2013 where the SF-VA had been applied.InterVA and descriptive analysis were used to calculate cause-specific mortality fractions(CSMFs),and to examine responses to the new indicators and whether and how they varied by medical CODs and age/sex sub-groups.Results:One thousand two hundred forty-nine deaths were recorded in the Agincourt HDSS censuses in 2012-13 of which 1,196(96%)had complete VA data.Infectious and non-communicable conditions accounted for the majority of deaths(47%and 39%respectively)with smaller proportions attributed to external,neonatal and maternal causes(5%,2%and 1%respectively).5%of deaths were of indeterminable cause.The new indicators revealed multiple problems with access to care at the time of death:39%of deaths did not call for help,36%found care unaffordable overall,and 33%did not go to a facility.These problems were reported consistently across age and sex sub-groups.Acute conditions and younger age groups had fewer problems with overall costs but more with not calling for help or going to a facility.An illustrative health systems interpretation suggests extending and promoting existing provisions for transport and financial access in this setting.Conclusions:Supplementing VA with questions on the circumstances of mortality provides complementary information to CSMFs relevant for health planning.Further contextualisation of the method and results are underway with health systems stakeholders to develop the interpretation sequence as part of a health policy and systems research approach.

The‘experimental public’in longitudinal health research:views of local leaders and service providers in rural South Africa

Background:The concept of‘experimental public’has been recently applied to publics involved in clinical trials.This term could also be applied to publics involved in longitudinal research such as health and demographic surveillance systems.The ethics of practice and public engagement with these experimental publics are of key importance and include issues of informed consent,confidentiality,collection of body tissue samples and fair local benefit.Methods:Individual(n=11)and focus group(n=5)qualitative semi-structured interviews were conducted with 56 local leaders and service providers regarding their views about research activities in a longitudinal health research study site run by the MRC/Wits Rural Public Health and Health Transitions Research Unit(Agincourt)in rural South Africa.Deductive and inductive thematic analysis was undertaken using NVivo software to identify the emergent themes.Results:There was an understanding of the usefulness of collecting demographic data,but reasons for gathering other contextual data such as on food security,as well as the reasons for collection of blood was less clear.While appreciation was expressed for feedback of individual results such as blood pressure levels during home-based data collection,there were requests for more results from biomarkers,and for these to be given at home,rather than at the clinic.There were reports of indirect refusals,and offers by leaders to assist in reducing refusal rates.There were concerns about confidentiality,especially in the publication of results.Some leaders would have liked to receive more individual level data for planning of services,although they understood this would breach confidentiality.Service providers were concerned about the withdrawal of some services post intervention trials.Conclusions:This experimental public has,over time,developed a nuanced understanding of the reasons for research and the procedures undertaken.Discussions concerning fair benefit ranged from requests for more individual clinically-relevant results for participants,to understanding how research results could assist in planning of public health services at local and national levels.The concerns illustrate the complexity of the ethics of practice which has implications for policy,practice and governance for those working in longitudinal health research sites globally.

Erratum to:Moving from medical to health systems classifications of deaths:extending verbal autopsy to collect information on the circumstances of mortality

Erratum After publication of the original article[1]it was brought to our attention that a couple of typos were incorporated into the published text.Please note that the third author name was incorrectly written as‘Ryan G.Wager’.The correct author name should be‘Ryan G.Wagner’.Secondly,there was a repetition of the word‘deaths’in the first sentence of the results paragraph.These have both now been corrected on the BioMed Central website.