Chapter 16 INFORMATION AND INDICATORS FOR ACCOUNTABILITY
Ronelle Burger, Andy Gray, Dumisani Hompashe
Introduction
People have a right to play an active role in maintaining, promoting and restoring their health and to participate in the planning, organisation, operation and control of primary health care (PHC). These rights were recognised in the 1978 Declaration of Alma-Ata and updated in the 2018 Declaration of Astana (WHO, 1978; WHO, 2018). The Alma-Ata declaration promotes a people-centred approach to health systems that celebrates ‘the spirit of self-reliance and self-determination’ and acknowledges that the people ‘have the right and duty to participate individually and collectively in the planning and implementation of their health care’ (WHO, 1978). Community participation, meaning ‘involvement in decision-making with regard to priority-setting, planning, implementation, and evaluation at local, national, and global levels’ (Haricharan et al., 2021: 2) is instrumental in service delivery governance and can encourage the accountability and needs-responsiveness of a health system (WHO, 1978; WHO, 2015). Such participation enhances equity and social justice. Similarly, health workers and policy-makers, because they are appointed to serve citizens, need to be responsive and accountable to those citizens. The Astana Declaration expands on the original Alma-Ata Declaration by describing the responsibilities of health providers more explicitly and mentioning the aspiration to ‘increase community ownership and contribute to the accountability of the public and private sectors for more people to live healthier lives in enabling and health-conducive environments’ (WHO, 2018). This also resonates with the recommendation by Kruk et al. (2018), in the Lancet Global Health Commission on High-Quality Health Systems, to promote health system quality by empowering people to hold systems accountable and actively seek high-quality care.
The post-apartheid South African government introduced a number of reforms to create channels for health system accountability and to expand the role of communities, but these channels did not function well in practice. The post-apartheid
government adopted community participation as part of a broader, continuing health system reform. The new, decentralised, preventative health system was intended to be a departure from the previous centralised, curative system (Haricharan et al., 2021).
The White Paper for the Transformation of the Health System in South Africa (1997) stresses the importance of ‘the active participation and involvement of all sectors of South African society in health and health-related activities’, and the National Health Act 61 of 2003 provides for the establishment of health committees, hospital boards and district health councils. However, despite these reforms, the system remains centralised and top-down and often does not value and prioritise the needs of communities (NPC, 2012). The South African experience with hospital boards and clinic committees has been mixed, but the consensus in the literature is that in most cases the impact of these committees has been minimal (Haricharan et al., 2021). Complaints have been heard about the lack of political commitment, poor participation by facility managers, negative attitudes of health workers, inadequate resources, insufficient capacity and skills of committee members, and lack of clarity about the role and mandate of committees (Schneider et al., 2017).
In South Africa, the need for enhanced community ownership and provider accountability has become more urgent and pertinent after an era of government corruption and bureaucratic inaction under President Jacob Zuma. Commentators have interpreted the rising number of service delivery protests –reaching a peak between 2009 and 2013 – as evidence that communities are disgruntled and the available accountability channels are not perceived to be effective (Botes, 2018; Chenwi & Tissington, 2010).
There are at least three binding constraints (i.e. conditions that must be remedied or they will delay progress) that impede efforts aimed at making these channels more effective: the limited devolution of decision-making and power in the public health system, citizens’ feelings of disempowerment and low expectations of health providers, and the lack of timely access to information on local facilities, providers and environmental health local indicators. Devolution of power is crucial for local accountability, as hospitals and health facilities cannot be held to account when they do not have the authority to deal with citizens’ complaints. Citizens can only make effective use of the available accountability channels if they know their rights, know what they can expect of health services and environmental health standards, and feel empowered to speak out, knowing that their voices matter and can make a difference (Zwama et al., 2019). Accountability requires transparency, and accurate and updated local indicators to help communities and patients assess and evaluate local service provision and environmental health (Ebrahim & Weisband, 2007; Potts, 2008).
This chapter focuses on the third of these three binding constraints. The Lancet Global Health Commission on High-Quality Health Systems (Kruk et al., 2018) concluded that measurement is key to accountability and quality improvement. Many of the available indicators globally do not capture the processes and outcomes that matter most to people. In their report, the Commission called for fewer, but better, health system indicators. They found that information systems generate many metrics that produce inadequate insight at a substantial cost, including those on public expenditure and health worker time. Indicators on inputs are widely available but weakly related to the quality of care that patients receive. Similarly, indicators such as the percentage of births with skilled attendants do not reflect the quality of childbirth care and the Commission warns that this can encourage unwarranted complacency about progress in maternal and new-born health. To enhance accountability, they recommend that governments should provide a dashboard with a
broad set of health system performance indicators, updated annually. They propose that the set should cover health outcomes, people’s confidence in the health system, user experience, financial protection (such as out-of-pocket expenditure and affordability ratios) and measures of health inequality, equity and social justice. The Commission omitted environmental health indicators from their list, but this is clearly vital to include.
This chapter describes and evaluates advances in the availability of accurate and timely local health information in South Africa between 2015 and 2020 against the backdrop of calls for more community participation, improved health system responsiveness to community needs and priorities, and enhanced provider accountability. The chapter deals with both the public and the private health sectors, although most routine data sources predominantly cover public sector provision of health care services.
Background to information and indicators for accountability
The term ‘accountability’ is now widely used in health policy statements and documents, as this concept is universally accepted as essential for good governance. However, the meaning of the term has been diluted through overuse and by imprecise and vague use as a proxy for good governance. The literature on accountability explains the concept as a provider’s obligations to the people who need its services, such as the obligations of a government to the country’s citizens, or a hospital to the patients. The government’s obligation derives from its election by citizens as their representative. In the case of medical service providers appointed by government, the obligation then is derived indirectly and stems from the government’s appointment of such providers, the providers’ contractual obligation to the government, the government’s obligation to the citizens, and the patients’ health needs. Providers can be contracted via salaried employment or via services rendered for a fee. The important point here is that while the government can contract out the delivery of a service, the responsibility for this service remains that of the government.
This responsibility implies that citizens (in the case of this chapter, patients) have the right to ask the state to explain why it made specific decisions and took certain actions. Citizens (patients) can assess and evaluate the decisions and actions of the state and use their voice to complain and call for reform, but also to give positive feedback, call for penalties or mobilise communities to demand reforms. Figure 16.1 illustrates these roles and relationships. In line with the framework proposed by the Lancet Global Health Commission on High-Quality Health Systems, we have placed citizens and patients at the centre of this diagram (Kruk & Pate, 2020).
Various institutional accountability support mechanisms can support, enhance and strengthen these accountability relationships. Media reporting can help to assess whether government and providers are meeting their responsibilities and giving prominence to patients’ grievances and reform agendas, making it more likely that their voices will be heard. Non-governmental organisations play a similar role, but using different channels. Both civil society and the media can make patients aware of their rights and what they can expect (and demand) from providers and the government. The judicial system can enforce accountability in cases where responsibilities and obligations have been acknowledged as legal rights. In South Africa, all three mechanisms have been used well and effectively (Levy, Hirsh, Naidoo & Nxele, 2021; Raith Foundation, 2020; Wasserman, 2020; Heywood, 2009; Pieterse, 2008).
Figure 16.1 Health system accountability relationships
Source: Authors’ diagram representing an overview of the literature
The framework shown in Figure 16.1 makes it clear how responsibilities and rights are linked to information. The information, in turn, allows for evaluation and assessment against selected indicators, by citizens, civil society and media. Transparency ensures that there is a firmer and more credible basis for these assessments and evaluations, enabling the verification of the empirical claims motivating grievances and demands.
Examining information and indicators from the point of view of governance and accountability is very different to simply considering whether the information and indicators are adequate for planning or decision-making purposes.
Table 16.1 explores the overlap between information and accountability. It first lists five criteria that information and indicators must meet to facilitate and promote the assessment and evaluation function of accountability. Firstly, the information or indicators need to be perceived as credible, reliable and accurate. Secondly, they need to be available regularly (at least yearly) to enable tracking over time. Thirdly, the timely release of data is crucial to ensure early detection of problems and a rapid response, and ideally there should be alignment between an indicator’s geographical aggregation and the likely sphere of influence for patients and citizens (such as facility or sub-district level). Fourthly, the indicators should ideally identify problems at the point where they emerge. For example, it is better to identify bad eating habits in children by an increase in child obesity than by an increase in diabetes 30 years later or cardiovascular disease 40 years later. The fifth, and possibly most demanding criterion is facility-level accountability. To satisfy this criterion we need indicators that capture facility performance. The concern here is that most health system indicators are influenced by the feeder community’s profile and are thus affected by poverty and social problems, making it difficult to find indicators that can assess health facility performance. For instance, if a facility has a high percentage of pregnant women accessing antenatal care late, this might be attributable to supply-side factors, such as long waiting times or nurses turning pregnant women away, or to demand-side factors, such as cultural beliefs or patients postponing pregnancy testing, or to a combination of demand- and
supply-side factors. Indicators with a large range of potential drivers are therefore less useful for promoting accountability.
The second group of accountability dimensions in Table 16.1 lists two criteria relating to patient voice. When patients share their assessments and evaluations of service delivery, their voices are more likely to be heard and their stories to travel further when they focus on indicators that are easy to interpret and understand and that matter to most people. An increase in a composite measure such as an index would, for instance, be difficult to interpret, while a rise in avoidable deaths among children under five is easily recognised as an indicator that matters.
Accountability dimensions
Assessment and evaluation of provider quality and environmental health
requirements for information and indicators
Widely viewed as credible, reliable and accurate
Available at regular intervals, enabling tracking over time
Timely availability and available at local level to identify facilities that need support at an early stage
Indicators that allow early identification of health system weaknesses (e.g. proportion of people living with HIV/Aids on treatment who have undetectable viral load)
For assessing facility effectiveness: Clear measures of facility effectiveness that partly reflect community factors
Easy to understand and interpret meaning of the indicator
Patients’ voices
Clarity on why this indicator matters to communities and patient groups, and on how to improve it
Source: Authors’ diagram representing an overview of the literature
The South African health system has a large number of data sources. Routine administrative data, predominantly from the public sector, is collected via the District Health Information System (DHIS) to support decentralised decision-making (Heywood & Rohde, 2001). The DHIS was designed to provide facility staff with local-level feedback on service provision and changes in service needs and to track key targets (Williamson & Stoops, 2001). The system draws on the Core Health Indicators as summarised in the National Indicator Data Set (NIDS), including data on maternal health, child health, HIV and tuberculosis (TB). Information on TB was initially captured in parallel vertical electronic TB registers (ETR.net, and EDR.net for drug-resistant TB patients), but in 2014 the National Department of Health (NDoH) decided to integrate TB information into TIER.net (Three Integrated Electronic Registers),1 which was initially used for HIV services (Myburgh et al., 2020). Data from TIER.net are now integrated into the DHIS. Most of the information in the DHIS is available every month and at the facility level. Processing delays introduce lags in the availability of the DHIS data. Public access to the data is via formal request. Other data sources are PERSAL, an integrated personnel and salary system; Vulekamali (the National Treasury’s budget tracking data site and application programming interface); and Vulindlela, which tracks non-staff expenditure.
1 As proposed by the WHO’s three-tiered ART patient monitoring and evaluation strategy, the three tiers were a paper-based system, a non-networked electronic system and a networked electronic system.
Table 16.1 Required attributes of health system indicators to enhance accountability
The data on the private health sector is patchy and fragmented. It is often not comparable across providers and its indicators are rarely comparable to those of the public sector. Its key indicators, such as surgery success rates or mortality rates, are rarely publicly accessible. Much of the routine data produced by providers and medical schemes is generated for accounting or billing and not primarily clinical purposes. An important private health markets data source is the Council for Medical Schemes, which provides aggregated membership and claims data (CMS, 2020). One of the intermediaries, Mediscor, provides public access to the pharmaceutical utilisation data of a large subsample of medical scheme beneficiaries (Mediscor, 2020). The pharmaceutical industry relies on sales volumes data provided by companies such as IQVIA. The Medicines Price Registry website tells consumers the maximum fee they should be paying for medicines (based on government fee schedules) and lists more affordable generic alternatives.
In addition to these administrative data sources, several household surveys provide useful information on access to health services and health outcomes from a citizen and patient perspective. These include demographic surveys such as the 1998, 2003 and 2016 Demographic and Health Surveys, nutrition surveys such as the 2013 SANHANES (South African National Health and Nutrition Examination Survey), and general household surveys with health modules such as the longitudinal National Income Dynamics Study 2008 to 2017, the Statistics South Africa General Household Surveys 2002 to 2018, the 2001 and 2011 Census and the 2007 and 2016 Community Surveys.
Innovations and reforms, 2015–2020
The rest of this section outlines six significant information innovations or reforms that can strengthen the health system and make it more accountable: the rapid local data release in response to the pandemic, the Stock Visibility System (SVS), the Centralised Chronic Medicines Dispensing and Distribution (CCMDD) programme, the public release of Office for Health Standards Compliance inspection reports, the Western Cape Provincial Health Data Centre, and the Ritshidze project.
Rapid and innovative local data in response to the pandemic
While routine data sets from the above sources are traditionally released only after a considerable time lag, during the COVID-19 pandemic when timely information was vital, information systems were adjusted and innovated to enable rapid collation, cleaning, analysis and release of data into the public domain. The National Institute for Communicable Diseases (NICD) has been developing its electronic app for national surveillance of Notifiable Medical Conditions since 2017, but the COVID-19 pandemic provided an opportunity to showcase the benefits of monitoring trends with minimal delays. The NICD’s DATCOV hospital surveillance system was developed in response to the need to track trends in COVID-19 hospitalisations and study COVID-19 hospitalisation risk. These efforts to provide timely and reliable evidence for public decision-making demonstrate the value of transparency, ease of access, timeliness, and the integration of public and private health systems. It is, however, concerning that the Medical Research Council’s estimation of excess deaths (i.e. the share of deaths that is above expectation based on previous data) suggests that the system could be missing a large share of COVID-19 mortality (MRC, 2021). While not all excess deaths would be COVID-19 deaths, the strong correlation between these excess deaths and the official Information and indicators for
COVID-19 mortality statistics provides a compelling case for interpreting the majority of the excess deaths as being due to the pandemic. Assuming such an interpretation, missed cases would be attributed mainly to misreporting or patients not being tested for COVID-19.
In addition to innovative surveillance systems, there were rapid social surveys tracking hardship and unemployment during the pandemic. Surveys such as the National Income Dynamics Study Coronavirus Rapid Mobile Survey (NIDS-CRAM) and the Human Sciences Research Council and University of Johannesburg COVID-19 Democracy Survey generated rapid but credible aggregated data on how the pandemic and the lockdown affected unemployment and social problems and changes in life circumstances, health beliefs and health behaviour. They helped to amplify the voices of citizens and enhanced responsiveness to citizens and their needs during the pandemic. Surveys such as this normally take three years from conceptualisation to public release, going through the stages of procurement of funding, ethics application, questionnaire design, contracting of survey firms, data gathering, data cleaning and curation, and writing of reports. However, in the case of NIDS-CRAM, tight deadlines, high levels of commitment and running parallel processes enabled the team to plan, fund, conduct, analyse and release their survey in less than four months. Such rapid surveys have been helpful in shaping the social policy response to the increased hardship following the pandemic and lockdown.
Since the initiation of the COVID-19 vaccination programme in May 2021, daily updates on the number of vaccine doses administered per province, in both the public and private sectors, have been posted on the South African Coronavirus website,2 and the South African Health Products Regulatory Authority (SAHPRA) has provided reports on adverse events after immunisation with the COVID-19 vaccines.3
Stock Visibility System (SVS)
The NDoH’s SVS is another example of how improved information can facilitate responsiveness. Since its launch in 2014, this cloud-based reporting system has been rolled out to more than 3 500 clinics. Designed to track the availability of medicines, it is paired to a smartphone mobile app that can capture and upload information on the availability and expiry rates of a facility’s medicines. The aim of this system is early detection to minimise drug stock-outs. It sends the staff reminders about weekly stock updates and flags problems according to an escalation protocol. The app can also be used to order and receive medicine. There are no data costs associated with using the app, as it works via a zero-rated channel. The system has now been combined with stock management data, under the overarching system referred to as the National Surveillance Centre. This data can be used to assess the use of particular medicines. For example, the National Policy Framework and Strategy on Palliative Care (2017–2022) includes an indicator of morphine consumption per district health service headcount. The indicator’s usefulness was demonstrated by a pharmacy student project at the University of KwaZulu-Natal (Dhoodat et al., 2017), which showed that public sector oral morphine use in 2016 ranged from 2.8mg per 100 of those visiting the public sector for ambulatory care (in the rural Umzinyathi district) to 156.2mg (in the urban uMgungundlovu district). Subsequent student projects (Akoonjee et al., 2019;
1 See https://sacoronavirus.co.za/latest-vaccine-statistics/
2 See http://aefi-reporting.sahpra.org.za/
Andrew et al., 2020) have shown how antimicrobial use has varied between districts in KwaZulu-Natal and how tramadol use has changed over time, using the same data sources (depot and direct delivery issues to health facilities, normalised by the estimated uninsured population per district).
The then Minister of Health, Aaron Motsoaledi, reported that in 2014 and 2015 the number of stock-outs for antiretrovirals, TB medicines and vaccines decreased in KwaZulu-Natal by 46%, 49% and 14%, respectively, and in Limpopo by 66%, 49% and 42%%, respectively (Motsoaledi, 2016). By August 2019, more than 90% of facilities were regularly reporting their stock levels on the SVS (McKenzie & McCann, 2016).
Given this chapter’s focus on health system responsiveness, it is important to note that the SVS was introduced by the NDoH in response to persistent advocacy by non-profit organisations (NPOs), under the umbrella of the Stop Stockouts Project (SSP).4 The NPOs involved in this programme were Section27, Médecins Sans Frontières, the Southern African HIV Clinicians Society, the Rural Doctors Association of South Africa, the Rural Health Advocacy Project, and the Treatment Action Campaign. The NPOs drew attention to the frequent stock-outs of vital medicines and the adverse consequences of these stock-outs. As part of the SSP, the NPOs trained community members on their health rights, set up a hotline to report local stock-outs and persuaded the NDoH to run an annual survey to track the levels of drug stock-outs at their facilities (McKenzie & McCann, 2016).
Centralised Chronic Medicines Dispensing and Distribution programme (CCMDD)
The launch of the CCMDD programme was also a notable milestone for patient-centred care. This programme is a dispensing operation that allows stable chronic patients to collect their medication from a public health facility express queue, a private provider, or designated community-based pick-up points (PUPs) such as churches, community halls or a Pelebox. The Pelebox is a smart locker technology which uses the patient’s mobile phone number and a one-time PIN sent to the mobile phone as a security measure. It flags patients who have failed to collect their medicine and are at risk of defaulting, which facilitates improved patient management. The centralised dispensing function is performed by a contracted pharmacy, using state tender stock funded by the participating provinces (all except the Western Cape, which had previously contracted its own centralised dispensing unit). Although the number of patients served by the programme can be shown per disease, these data are difficult to interpret, as the percentage of patients referred to the centralised service is unknown.
The programme was first trialled at 10 of the 11 National Health Insurance (NHI) pilot districts in 2014 (excluding Eden). In 2016 it expanded nationally. By 2019, 3 436 facilities had registered as part of the programme. At this point, the programme covered 88% of South Africa’s districts, with the remainder covered by the Western Cape Chronic Dispensing Unit. Patients were collecting medication from more than 2 000 external PUPs by the end of 2019. More than 2 million patients were enrolled in the programme, of whom 76% were on ART (Liu et al., 2021).
4 Previously the District Health Information System (DHIS) had an indicator, now no longer collected, which was based on the availability of a tracer list of drugs at health facilities. Day (2014) showed that the data from the two sources were correlated.
The programme has yielded substantial benefits for both patients and the health system. Long waiting times and inconvenient opening times can impede medicine collection and treatment adherence (Dorward et al., 2020). Thus, by dramatically reducing the time cost associated with collecting chronic medication, the programme is removing the obstacles to patient adherence. Private providers often have extended hours of operation, allowing working patients to collect their medicine over weekends. Better adherence should affect disease progression, quality of life, the demand for acute care, and particularly hospitalisation. This decanting lightens the load on overburdened public health facilities and is expected to benefit patients who use these facilities.
Public release of Office for Health Standards Compliance (OHSC) inspection reports
The OHSC was established in 2013 as an independent quality regulator mandated to assess the quality structures, processes and outcomes of health establishments against pre-determined standards. It has three functions: it inspects facilities, certifies them, and enforces compliance with prescribed standards. It publishes the scores from its facility inspections in its annual inspection reports, providing both facility-level scores and aggregates from functional areas, per province.
The release of the OHSC’s inspection reports since 2016 represents a significant stride ahead in the pursuit of quality health services and accountability (OHSC, 2016). The 2016/2017 inspection report found that only seven of the 649 public sector facilities visited complied with standards. A score of 80% was the cut-off point for compliance (OHSC, 2017). By 2019, there had been little improvement, with nine of the 730 public sector facilities complying with standards without any qualification or condition, and a further 155 facilities (21%) being classified as compliant with a qualification or condition. It is concerning that 248 facilities (34%) were non-compliant and 103 (14%) critically non-compliant (OHSC, 2020). As from 20225, the OHSC will include private hospitals in its compliance investigation schedule. The target in 2022/23 is to inspect 52 private health facilities (12% of the total number).
The South African Lancet Health Commission report on Health System Quality (2019) positioned the OHSC as an important role player in promoting the quality of care in the South African health system. However, the report acknowledges that the understaffed OHSC would require more teeth to fulfil this role effectively. The OHSC has faced considerable scrutiny and criticism, and much of this may be due to its prominent and expanded role under the NHI. The OHSC will monitor compliance with the standards by public and private health care practitioners who contract with government to provide services to members of the public. In monitoring compliance, it will issue certificates to health care facilities as a public guarantee of compliance.
There are concerns that the indicators tracked by the OHSC do not have a clear link to health outcomes (Mabaso, 2016), and a disproportionate share of these are bureaucratic tick boxes that represent inputs and necessary conditions – or ‘structure variables’ in the Donabedian (2005) framework for measuring health care quality. This is a concern, because health systems should not be assessed on the basis of inputs such as the number of doctors or the number of clinics or the number of medicines dispensed.
5 https://ohsc.org.za/11949-2/
Inputs rarely matter to patients. What matters is how well systems perform and whether they meet needs. What matters to patients is recovering from illness and being treated with care and respect (Kruk, 2018; The Lancet, 2018). Currently, the OHSC inspectors only interview a small sample of patients per facility (OHCS, 2016).
Although administratively linked to the OHSC, the Office of the Health Ombud has a distinct and independent responsibility to receive complaints from members of the public about the quality of service they receive from medical facilities and to carry out a systematic inquiry. The South African Lancet Health Commission report on Health System Quality (2019) flagged the lack of independence of the Health Ombud, who relies on the staff of the OHSC, as a concern.
Western Cape Provincial Health Data Centre (PHDC)
The PHDC supports clinical care by providing transparent real-time clinical data to providers, and indicators to track treatment adherence and patient management. To set up the centre, patient-level clinical data across various information systems had to be consolidated. Patient registration was digitised, a unique identifier was implemented across the various data systems, and there was standardisation of the capture of information across core administrative systems in hospitals and clinics (Boulle et al., 2019). The data centre links almost two dozen sources of data to track the patient’s health journey over time. During the pandemic, this rich data set was used to administer a telemedicine service, identifying and managing high-risk COVID-19 cases with comorbidities (David et al., 2021). The PHDC enabled the early assessment of the association between HIV and severe COVID-19 outcomes, at the time a key uncertainty on how COVID-19 would be experienced in the region, as well as the exploration of COVID-19 in diabetic patients (WCDoH & NICD, 2021; Dave et al., 2021). The centre links data on case detection, laboratory assessments, treatment access and outcomes and can access this data with minimal delays, which allows it to function as both a shared electronic health record (through a web-based Single Patient Viewer application) and as a surveillance system for specific diseases (Boulle et al., 2019).
The PHDC team ascribes the success of the centre to the prioritisation of clinical care support. This enabled them to demonstrate, at an early point in the project, the centre’s value to clinical teams at the facilities. This is vital, as it is these teams who are doing the work of capturing patients’ clinical data, and it ensures continual improvement of the systems due to the ongoing scrutiny of consolidated records at an individual patient level. This approach is in contrast to the typical data improvement project, driven by researchers or funders, where data completeness and fidelity are often uncertain, and new data collection is frequently a once-off aggregate exercise providing no direct benefit to patients or providers
6 See https://ritshidze.org.za/category/resources/ Information
The Ritshidze project
Although the Ritshidze project was not motivated by the pandemic (launched in December 2019), it deserves a mention because it is also innovative. The initiative has the primary aim of using data to boost citizen voices to hold government and aid agencies accountable for inadequacies in TB and HIV prevention, diagnosis and treatment. Community members collect information on TB and HIV public primary care services from local sites. The data is analysed, solutions are explored for the problems identified, and the proposed problems and solutions then serve as a platform for advocating for improved health services in the community. At the time of writing this chapter, the Mpumalanga, Free State, Limpopo, North West, Eastern Cape, KwaZulu-Natal and Gauteng provincial reports had been released.6
The Ritshidze project is based on a community-led monitoring system that takes place quarterly at 400 clinics and community health care centres across 27 districts in 8 provinces. The project looks at several health care indicators that include facility hours and waiting times, clinic conditions, access to medicines and shortages, contraception services and access, and HIV-related services. Figure 16.2 shows responses from patients regarding indicators of medicine shortages. The data for the figure is based on 1 037 responses from public health care facilities in seven provinces (Eastern Cape, Free State, Gauteng, KwaZulu-Natal, Limpopo, Mpumalanga, and North West). From the graph, it is clear that contraceptives (43%) are most often reported to be in short supply, followed by HIV medicine (14%) and vaccines (13%).
Source: Ritshidze provincial data set
Figure 16.2 Medicine shortages reported by patients
Progress by 2020
The six information innovations or reforms outlined above have helped to improve South Africa’s health system, moving it towards the gains anticipated by government’s ambitious 2019 National Digital Health Strategy. The response to the COVID-19 pandemic has shown not only that rapid data collection can promote transparency and evidence-based decision-making, but also that timely indicators are feasible and may have helped to shift expectations and norms. Despite the Promotion of Access to Information Act 2 of 2000 (PAIA), too few public and private health data sets are made available to the public in a timely manner. In South Africa, many data sets of public importance are accessible in principle, but effectively protected from widespread scrutiny by long-drawn-out or unpredictable bureaucratic processes. In many other countries the same data is downloadable from government websites without any paperwork being required. As much as legislation can enable access, it can also hamper needed access when interpreted too narrowly. The Protection of Personal Information Act 4 of 2013 (POPIA) has specific provisions that enable the ‘further processing’ of personal information gathered for one purpose, for example to ‘to prevent or mitigate a serious and imminent threat to … public health or public safety’. Despite this, the Act is frequently cited as a reason to deny access to personal information. In South Africa, data is sometimes released only after a lengthy waiting period. Recent examples of long delays in data release have been the Demographic and Health Survey (25 months), the National TB Prevalence Survey (19 months) and the National Immunisation Coverage Survey (not yet released, although the fieldwork ended in June 2019). The rapid surveys and surveillance systems set up during the pandemic demonstrated not only the value of timely data, but also that the processes of data cleaning, preparation, curation and analysis can be compressed.
The SVS and the CCMDD programme support the management and dispensing of medicine and yield useful information on the availability of medicine and collection of prescriptions. However, there is still no information on the percentage of patients receiving the right medication. In 2017, the Lancet Commission on Essential Medicines Policies called for the establishment of ‘independent pharmaceutical analytics units’, specifically to ‘focus on generating information for action to promote quality use’. The Commission highlighted the lack of attention to access to essential medicines, their affordability and quality, and their correct use, in the reports on the Millennium Development Goals and Sustainable Development Goals, and also in the World Health Statistics. A set of 24 indicators were proposed to measure progress. Nationally, we have seen some progress with the National Surveillance Centre data, which is reported to district level and is being used in at least some provinces. However, this data is rarely placed in the public domain, hence its quality has not been the subject of independent review. The Centre’s work does, however, show how greater reliance on routine data can be facilitated by new technologies, including mobile applications (Simão et al., 2018).
Arguably the most serious shortcoming of the current set of health system indicators is the shortage of information on health system performance: the components that would be called ‘process and outcomes variables’ in the Donabedian quality of care model (2005). Overwhelmingly, the health information available provides a window
on health system inputs – or ‘structure’ in the Donabedian model. Very little data is available on outcomes. For instance, despite myocardial infarctions being a large part of the country’s disease burden, we do not have public data on how many occur each year, what percentage are fatal and how well hospitals manage them. The shortage of data on the process and outcomes dimensions of health care is a serious deficiency in an era of evidence-based decision-making. It often means that performance management and planning and policy processes are blind to these dimensions.
The CCMDD programme provides some indirect information on chronic diseases, but more is needed. Except for HIV, where we have the ART cohort data set, there is also little information on control of chronic diseases. Modelled estimates of the extent of hypertension and diabetes control have been included in the Universal Health Coverage Service Coverage Index (UHC SCI), calculated for South African provinces and districts (Day et al., 2021). The CCMDD data can be used to track the dispensing and collection of hypertension medication, however, without a suitable denominator, the percentage of patients diagnosed with hypertension who are on medication cannot be determined. Moreover, aggregated data on the use of medicines cannot be used to assess drug adherence, evaluate drug safety, or compare outcomes for different drug treatments. Longitudinal data is essential to track patients across the system to examine continuity of care and the quality of patient management. The Western Cape PHDC has demonstrated the benefits of such capability. The Department of Health has been investing in an electronic health record system since 2014 and has also committed to system interoperability with its 2014 National Health Normative Standards Framework for Interoperability in eHealth. More than 44 million people have been registered on the government’s electronic health record system (Ramaphosa, 2020).
Aggregate data can also obscure differences at small area level, such as sub-districts or individual facilities. We thus need to disaggregate the available data in various ways, as noted by the Lancet Commission report on the future of health in sub-Saharan Africa, in order to enable local accountability and monitoring processes. Finally, there is also a shortage of data on the contribution of social and environmental factors to health outcomes, including education, social development, nutrition, water quality, air quality, sanitation and housing. It is crucial to invest in intersectoral data systems to promote and deepen the understanding of the social determinants of South Africa’s burden of disease. The planned revival of the Blue Drop and Green Drop reporting systems on water and sewerage, respectively – launched in 2009 but disbanded in 2014 – is an example of such an initiative. According to the Department of Water and Sanitation’s 2019 Water and Sanitation Masterplan, 44% of the water treatment works and 56% of the waste water treatment works were classified as not working properly (DWAF, 2019:19).
Conclusions and way forward
The projects and initiatives described in this chapter show how information system improvements, the public release of data and rapid local data can create pathways to strengthen accountability and enhance the responsiveness of the health system. The provision of information to communities is vital for promoting accountability. Rapid and credible data can help amplify patients’ voices and make the health system more responsive. Such data will empower patients and raise their expectations regarding the quality of care. These improvements inspire optimism, and chart the way forward.
The following are some reforms that should take priority in future. Greater transparency could be achieved by introducing norms and standards about expected delays in the public release of data. Obstacles to easy public access to data should be eliminated. There should be intersectoral collaboration in tracking social and environmental determinants of disease. The Core Health Indicators should be expanded to include more indicators that can track health system performance and more indicators of chronic disease prevalence and chronic disease patient management (such as hypertension and diabetes control, and treatment adherence). Expansion of the Core Health Indicators would imply a strategic commitment of the NDoH to invest in systems that can collate different data sets to make it possible to track patients across the health system. Today’s innovations in digital health records and rapid data have made it possible to access more timely feedback on how users are experiencing policies and programmes, thus helping to detect design and implementation problems at an early stage and fine-tune these initiatives.
In this chapter we mapped the progress with expanding the information available to document and track local health services and outcomes. Such information will however only strengthen downward accountability if local stakeholders (such as civil society groupings or patient organisations) are aware of it, and use it effectively to draw attention to local problems and lobby for solutions. In this way the information can then empower communities to ensure that primary health care facility staff and district-level decision-makers are held accountable. However, it is vital to acknowledge that this will not happen automatically, and will require substantial effort and investment by advocacy groups and community leaders.
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