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Developments in PNDSR in South Africa

Scale of the problem

In South Africa, perinatal deaths are defined as all stillbirths and early neonatal deaths (from live birth to seven full days after birth). While the country has accepted the definition* of reporting and recording all deaths (foetal and neonatal) weighing more than 500 grams, it is uncertain if all hospitals where deliveries take place are correctly reporting all deaths weighing less than 1000 grams, especially stillbirths. This may be influenced by a South African law that requires all defined stillbirths to have a burial and notification of death. In rural areas and busy hospitals, this may be seen as labour intensive for already overworked staff. Continue reading

Perinatal death surveillance and response to improve survival of babies

The mortality audit (or review) process is an established tool to assess the events around a death. Applying an audit cycle can highlight breakdowns from local to national levels and ultimately improve civil registration and vital statistic (CRVS) systems and quality of care. Maternal death surveillance and response (MDSR) is a form of this strategy that has been used by many countries[1].

Less information, however, has been captured and assessed on stillbirths and neonatal deaths[2]. In 2014, 51 priority countries reported having a policy on maternal death notification, and only 17 countries had a policy for reporting and reviewing stillbirths and neonatal deaths[3].

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Expert opinions from around the world: The role of the multi-disciplinary team in MDSR

We asked six experts from Malaysia, Ireland, Ethiopia and India about the importance of multi-disciplinary teams in maternal death surveillance and response (MDSR) systems. Here are the insights they shared with us.

Our contributors have all worked closely with MDSR (or maternal death review also known as MDR, which is a component of MDSR) in various guises, contexts and parts of the world. We have drawn together common themes from their insights to draw out lessons learned for the successful implementation of multi-disciplinary health actor involvement in MDSR.

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MDSR in Ethiopia: three years on

E4A has been providing technical assistance for the introduction, implementation and scale-up of Ethiopia’s national Maternal Death Surveillance & Response (MDSR) system since 2012.

At national level, this has involved contributing to the development of the MDSR Guidance, data collection tools and database, and training curriculum, participating as active members of the MDSR task force, and representing the programme internationally.

The Ethiopia E4A team is based in the MNCH department of the WHO Ethiopia country office. In addition to a Programme Director, E4A is supported by five regional Technical Advisors who have been supporting the four large agrarian regions (Amhara, Oromiya, SNNPR and Tigray) as well as Harari, Dire Dawa and Addis Ababa, and a Data Manager working in the EPHI Public Health Emergency Management (PHEM) directorate. The University of Aberdeen’s Immpact programme and Options serve as the E4A Technical Support Unit, providing strategic guidance and 2 advisors based in Ethiopia.

Read our two page summary of our experiences here>

Read our training materials and guidelines here>

The Maternal Death Audit Monitoring Form: a tool for action

In March 2015 we shared the news that the Evidence for Action programme in Ghana was piloting the use of Maternal Death Audit Monitoring Forms. This case study presents some of the key findings from this pilot, key challenges and lessons learned.

Background:

Ghana is faced with high maternal mortality. In 2015, the maternal mortality ratio was an estimated 319 deaths per 100,000 live births [1].  Facility-based maternal death audits have been used in Ghana as an important strategy to improve maternal health care since 2000. These audits are a qualitative improvement process that seeks to improve pregnancy care and outcomes through the systematic review of the care received. The ultimate purpose of maternal death audits is to identify factors contributing to the deaths and to take remedial action [2]. Continue reading

Malawi builds trust and accountability with a community MDSR system

This case study is an excerpt from a collection of 22 case studies by the Evidence for Action-MamaYe! programme based on their experiences. These case studies bring to light new learning about the specific ways in which evidence, advocacy and accountability must work together to bring about change.

Evidence for Action-MamaYe! was established in 2011 through funding from the UK Department of International Development. The programme’s goal is to save maternal and newborn lives in Ethiopia, Ghana, Malawi, Nigeria, Sierra Leone and Tanzania, through better resource allocation and improved quality of care.

When the Evidence for Action-MamaYe (E4A) programme first started operations in Malawi, we observed that while some facilities and districts were carrying out maternal death reviews, committees met only rarely and did not communicate systematically with other levels. Rudimentary action plans were sometimes developed, but there were no follow-up meetings to track change. Furthermore, the maternal death review process did not include the community level. Consequently, community factors that might have contributed to facility deaths and maternal deaths occurring within communities were not recorded, no explanation was fed back to families or communities on the reasons for facility-based deaths, and no actions were taken in response. This led to distrust between community members and facility staff, who themselves often blamed the families for bringing the woman to the facility too late. Continue reading

Saving Mothers, Giving Life initiative: lessons learned from a maternal death surveillance and response system in Uganda

Uganda was selected for a pilot project — Saving Mothers, Giving Life – to rapidly reduce maternal deaths through community and facility-based interventions. The model employs a comprehensive approach that builds upon existing district health systems, including strengthening the evidence base for improving maternal and perinatal survival. Read how investing in village health teams has resulted in a 30% reduction in population-based maternal mortality as well as stimulating advocacy efforts and community mobilisation. 

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Learning from Ireland: establishing a confidential maternal death enquiry in a low maternal mortality context

Ireland has recorded a low maternal death rate for several years now, but it was still important for the country to introduce confidential maternal death enquiry.

Edel Manning – the MDE Ireland Co-ordinator, tells us why and how they recently introduced confidential enquiries. Edel outlines the inspiration, the challenges and the results that this new system achieved for Ireland’s mothers.

In recent decades, Ireland has been credited with a low maternal death rate: 4 per 100,000 live births. This was based on data derived from the Irish civil death registration system. However, in acknowledging national and international evidence, it was considered that in the absence of active case ascertainment, under-reporting and misclassification of maternal deaths occur, even in countries with advanced civil registration systems.

The aim of establishing a confidential enquiry into maternal deaths in Ireland was not just to ascertain numbers, but principally to promote safer pregnancy by learning how such tragedies could be avoided in the future. This could make a major contribution to informing and improving standards of care in maternity services.

Establishing MDE Ireland had many challenges. First, engaging and establishing support at governance level with stakeholders in the Irish maternity service including: the national health authority, maternity service providers, multidisciplinary health professionals and academics proved more protracted than expected.

This process was driven by a dedicated Maternal Mortality in Ireland Working Group, a joint Institute of Obstetricians and Gynaecologists in Ireland/Health Service Executive initiative which helped to garner the required support. Inviting multidisciplinary representatives from relevant stakeholders to join the Working Group, in the development stage, was considered key to establishing commitment for the project.  Although support for the ethos of the project was widely considered as laudable, issues of concern related to data protection, potential adverse litigation and anticipated review of cases by agencies out with MDE Ireland.

Jeyheich, Flickr (Creative Commons license)

Jeyheich, Flickr (Creative Commons license)

The confidential Maternal Death Enquiry (MDE) Ireland was officially established in 2009, with the stated objective of linking with the UK Confidential Enquiry into Maternal Deaths (CEMD). Given the relatively small number of maternities in Ireland (70,709 in 2012) there was much to be gained from pooling Irish data with data from the UK.  Joining a larger cohort of maternal death case reviews would help to preserve confidentiality and allow for more meaningful analysis and recommendations.  The UK, our nearest neighbour, has a similar maternity service and a respected and validated methodology in the 60 year old CEMD, which could easily be adapted to the Irish context.

The UK CEMD is part of the national Maternal, Newborn and Infant Clinical Outcomes Review Programme, which was previously conducted by the Centre for Maternal and Child Enquiries (CMACE), and was transferred to Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries (MBRRACE-UK) in 2012. MBRRACE-UK has revised and streamlined the process of data collection and analysis on maternal deaths, which will result in reports being published annually.

The first MBRRACE-UK report including data on maternal deaths occurring in Ireland was published in December 2015: ‘Saving Lives, Improving Mother’s Care: Lessons learned to inform future maternity care from the UK and Ireland Confidential Enquiries into Maternal Death and Morbidity 2009 – 2012’ 1.  Surveillance data on maternal deaths occurring in Ireland is not included in the MBRRACE-UK report.  Irish maternal mortality rates (MMR) are published independently in annual data briefs and in more detailed triennial MDE Ireland reports (available on the MDE Ireland website).

Since the inception of MDE Ireland in 2009, there have been many challenges in implementing the enquiry process nationally. It was clear to us that confidence and ‘buy-in’ for the confidential enquiry process was paramount at service level as it was a ‘top down’ approach.  We attempted to build this by:

  • Raising awareness and support for the MDE through presentations at the service level, articles in multidisciplinary journals and a national workshop;
  • Establishing a national reporting network to the MDE at service level and collaboration with coroners.
  • Promoting awareness that the MDE process is independent of clinical incident reporting and local review of serious adverse incidents;
  • Alleviating concerns regarding potential litigation.  Confidentiality is assured through a process of anonymisation of data submitted prior to multidisciplinary assessment of cases. There is no disclosure of information to any outside agency.

Similar to experience in the UK and other European countries, a key learning point was that a proactive approach to case ascertainment identified maternal deaths that were not captured by the civil death registration system.  However, achieving this has been labour intensive and, despite support letters from governing bodies, was challenging.  Participation in the Enquiry is policy but not statutory for publicly funded health care providers.  Further, the dedicated time of a national co-ordinator and the support and guidance of the Maternal Mortality in Ireland Working Group has been essential to implementing the enquiry process in Ireland.

A fundamental component of the UK CEMD process is dissemination of recommendations from enquiry reports.  Since its inception, MDE Ireland has promoted this element of the audit cycle through a series of organised educational events.

MDE Ireland’s most recent report was published in February 20152.  To improve the power of analysis and to facilitate direct comparisons with the UK, Irish MMR is presented over a rolling three year period.  Although the overall MMR identified by MDE Ireland (outlined in Table 1), compares favourably with the UK (MMR = 10.1 per 100,000 maternities for the years 2010-2012) and other developed countries, it is important to avoid complacency.  The ongoing enquiry process and collaboration with the UK CEMD will provide learning points for health professionals in advancing quality and safety within the Irish maternity services. As in the UK, our findings were that maternal deaths in Ireland during the years 2010-2012 were predominately due to indirect causes (70%) with the remainder (30%) due to direct obstetric causes.

The increasing number of pregnant women presenting in Ireland with co-morbidities has highlighted the ongoing need for appropriate assessment of women at the booking visit to a maternity unit, allocation of appropriate pathways of care and pre-conception counselling. Also, the disproportionately high representation of ethnic minorities in this cohort challenges us to address health seeking behaviours of immigrant pregnant women in a country which provides free maternity services for all pregnant women.

Table 1: Direct and Indirect Maternal Mortality rates per 100,000 maternities in Ireland: rolling three year average 2009 – 2012

Ireland_maternal death rates_tablesNB: The apparent increase in the MMR 2010 – 2012 is not statistically significant.

Acknowledgements:

This case study was written by Edel Manning – a trained midwife and currently the MDE Ireland Co-ordinator who is responsible for the co-ordination of the maternal death enquiry process and dissemination of MDE recommendations. This is an updated version of a case study originally published in our May 2014 issue of the MDSR Action Network newsletter.

For further information on MDE Ireland please visit their website – https://www.ucc.ie/en/mde/

References:

  1. Knight M, Kenyon S, Brocklehurst P, Neilson J, Shakespeare J, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care – Lessons learned to inform future maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009–12. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2014. Available at: https://www.npeu.ox.ac.uk/mbrrace-uk/reports
  2. O’Hare MF, Manning E, Greene RA on behalf of MDE Ireland. Confidential Maternal Death Enquiry in Ireland, Report for 2009 – 2012. Cork: National Perinatal Epidemiology Centre, February 2015. Available at: http://www.ucc.ie/en/mde/publications/

Ethiopia puts ‘R’ in MDSR

In May 2013, the Federal Ministry of Health launched Ethiopia’s MDSR system. By the end of 2014, the system had been introduced in 17 zones and has been integrated into the existing surveillance system. This case study presents the findings of a preliminary audit of responses to maternal death.  The “response” arm of MDSR is recognized to be the most challenging part of MDSR with few centres managing to respond in an organised constructive manner to maternal death.

A preliminary audit of responses to maternal death from health facilities at different levels of the health system demonstrated an average of 3 responses to each maternal death.

The audit captured 211 responses to 71 maternal deaths at 33 health facilities/ communities. Of the 211 responses 39% were aimed at improving care within the hospital or health centre demonstrating a constructive approach to the MDSR process. In other words, health facility staff did not simply pass blame to the community or referring health facility for the woman’s death and say “she came too late”.

Actions improved feedback and training to staff, improving services available at the health facility, improving access to essential drugs and equipment and redistribution of staff to improve effectiveness. A further 35% of responses targeted community awareness of the need to access health care in pregnancy. This was done through a variety of methods including regular women’s groups, community meetings and pregnant women’s conference.

MDSR information is a powerful tool of communication between health professionals and communities. Fifteen per cent of actions involved communication with referring health facilities thereby strengthening referral pathways, whilst the remaining 10% targeted the regional or zonal offices to improve transport systems and obtain essential drugs.

It is noted that the majority of the responses taken were not expensive in terms of cash but contributed to staff professional development and raising community awareness of maternal health issues.

To read more, take a look at Ethiopia’s MDSR Newsletter here and a case study in the World Health Organization’s global MDSR report here.

Acknowledgements:

Case study written by Evidence for Action in Ethiopia.

Photo credit: UNICEF Ethiopia/2010/Tuschman

Using mobile technology to support vital registration and verbal autopsy in the community: Bonsaaso Millennium Villages Project, Ghana

Prior to the inception of the Ghana Bonsaaso Millennium Villages Project in 2006,  maternal mortality was as high as 345 deaths per 100,000 live births, child mortality was 110 deaths per 1000 live births, and the institutional delivery rate was as low as 32%. The challenge of accessing healthcare was identified as the main cause of poor health indicators in the area at that time.

The Millennium Villages Project (MVP) in Ghana initiated vital registration and verbal autopsy (VRVA) in 2008 to support the improvement of maternal and child health services, and, in turn, to reduce infant, child and maternal deaths. Vital registration ensured that all community members were properly identified and included in the denominator of measures being tracked by MVP. In 2011, verbal autopsy was strengthened to ensure that any death in the village was recorded and analysed for medical and social causes so that future deaths could be prevented.

The vital registration and verbal autopsy system

At the community level, community health workers (CHWs) registered household members within their community, making sure to include pregnant women and children under five. They also collected data on the following vital statistics: birth registration (indicating date and place of birth), pregnancy outcomes, and all deaths.

Prior to 2008, a paper-based system was used to collect this data. Multiple challenges were experienced from the paper-based system, including a large volume of information being gathered making it difficult to manage and data analysis very time-consuming.

In late 2009, mobile communications were established throughout the area and, in 2010, the mobile-phone based system called ChildCount+ (CC+) was introduced by the project to address the problems of the paper-based system. The open-source system, CC+, enabled CHWs to send data via SMS text messages to a central server, collecting data in real-time. This system was later migrated to a smartphone-based system called CommCare for general home visits.

A verbal autopsy specialist assists CHWs in conducting in-depth verbal investigations into the causes of each death in the community.  This investigation gathers information from the household and the health facilities of the catchment area where the death occurred to understand the circumstances behind the death.

This more extensive data collection by the verbal autopsy specialists required the use of a complementary electronic system known as Open Data Kit (ODK), where verbal autopsy data is inputted into smartphones using mobile forms.  Specialists visit homes, record the data on the phones and later return to an area with good coverage to send data to a central electronic medical record system – OpenMRS. The OpenMRS system then automatically uses this verbal autopsy data to generate reports on the social and medical causes of each death, which were reported back to local and remote teams. The mobile phone-based system integrated with Open MRS was also eventually migrated to run on the CommCare system in 2014.

How the data is used

The data is discussed during weekly MVP health team meetings comprising selected senior doctors, nurses and heads of public health programmes in the district. During these weekly meetings, vital statistics and verbal autopsy data is reviewed and analysed in order to identify solutions to the circumstances that led to the death and/or morbidity, and to prevent future occurrences.

On a monthly basis, a meeting with a larger stakeholder group takes place where issues on all deaths and morbidity trends are discussed. During these larger stakeholder meetings the verbal autopsy specialist presents on all cases of deaths that have been investigated. Participants of this monthly meeting comprise the MVP health team and multiple representatives from where the death occurred, including from the district referral hospital, from local facilities, from communities, and CHWs.  The meeting discusses the issues presented, finds solutions, and sets timelines for their implementation.

Examples of solutions implemented as a result of the verbal autopsy data include community health information sharing sessions and staff in-service training. These would be based on recommendations from the larger, monthly stakeholder meeting.

Achievements

The transition towards using these electronic data collection systems saw a greater volume of data reporting (see tables 1 and 2), which was in real-time and more accurate. This data collection has become an important monitoring and managerial tool, providing vital information in real-time, so that resources and staff performance gaps can be quickly identified and action taken immediately.  The programme has seen improvements in health staff performance, logistics provision and management. This implies that an effective data collection system provides the edge to improve performance for better results.

Table 1 and table 2Challenges and lessons learned

MVP has been successful in using effective data systems to improve performance and health outcomes. However, this was not achieved without challenges. Key challenges and lessons learned include:

  • Although the paper-based system cost less compared to the CommCare system, it was not cost-effective due to the limitations faced in using it:  time consuming to collect, numerous errors, risk of data loss, large costs for data entry, and lack of real-time data collection limiting rapid decision-making. Key costs to consider for the CommCare system include the smartphone and data bundle.
  • While the CC+ mobile phone-based system introduced in 2010 reduced data bulkiness, there were a number of challenges in using it, including CHWs having to type a lot of information into basic-feature phones, which led to significant errors, and CC+ requiring mobile service at the point of sending SMS text messages. Transferring to the CommCare system using smart phones in 2012 helped to address these problems. CommCare enabled CHWs to enter data on the smart phone anytime, anywhere with or without a mobile network service since data can be synchronized as soon as the CHW enters a network zone.  Also, CommCare can be designed to limit the amount of typing, and therefore reducing errors, by using drop down selection boxes and multiple choice selection options.
  • Training on using the technology takes time. It takes about three days to train someone in the technology and one to two months to become skilful in using it. Allocating time for this is important.
  • There will always be the challenge of the equipment, namely the phones getting lost, broken, or faulty. To address this challenge, the programme provides supervisors with back-up phones ready to be used until a permanent replacement is found.
  • We have not experienced families being concerned about using the mobile phones to collect the verbal autopsy data. Nevertheless, it is important to be culturally sensitive on when you conduct the interview (e.g. in our case, conduct the interview one week after the death) and explain to the family how the data is to be collected before the interview and that it will not be used for any wrong motive.

Future plans and the way forward

The success of the system has meant that the Ministry of Health and the Ghana Health Service have expressed interest in scaling up. MVP is currently working with the Ghana Government to look for both domestic and foreign support to scale-up the interventions.

Acknowledgments

This case study was written by Eric Akosah and Seth Ohemeng Dapaah from Millennium Villages Project, Bonsaaso-Ghana and reviewed by Dr Andrew S. Kanter, Columbia University.

Further information

Read more about this mHealth solution in the article ‘Combining vital events registration, verbal autopsy and electronic medical records in rural Ghana for improved health services delivery’ published by Studies in health technology and informatics and written by contributors to this case study and their colleagues – S., Ohemeng-Dapaah,  P., Pronyk, Akosa, E., Nemser, B., & Kanter, A.

Photo Credit: Danielle Goldman