Our health counts: In our voices.

The perspectives of families, and especially parents of children with special health care needs, need to be better understood by the government agencies, health care providers, associations, and information systems vendors that are integrating child health information systems. To date, research on children with special health care needs has not included the perspectives of parents on integrated child health information systems. Interviews were conducted with a limited number of parents of children with special health care needs and a young adult with special health care needs about their perspectives on integrated health information systems needs. The interviews revealed common themes: (1) parents have experienced the benefits of information technology for health care purposes, (2) parents believe integrated health information systems could help to coordinate their children's health care, (3) parents believe information technology can help improve accuracy and timeliness of information, (4) parents of children with special health care needs believe their children's health information should be available to those who need it, but safeguards must be in place, (5) parents believe health information systems can improve health care, but it is not the highest priority health care issue for them, and (6) parents believe that their involvement in issues related to children with special health care needs, including information technology, is critical. Parents of children with special health care needs hold strong opinions about their children's health care, including health information systems. Parents need to be central to discussions about development of integrated child health information systems if we are to develop information systems that serve the needs of children with special health care needs and their families.

IntroductionWHO’s reference classifications, ICD and ICF have traditionally served as standards for disease, health and disability related data. To meet the requirements of health (and disability) information systems in the 21st century WHO classifications need to represent the knowledge digitally in a coherent semantic structure. The knowledge representation in a classification requires that the information entities need to be identified with clear attributes and values and put into the context of an overall information model.AimsTo identify how we can possibly build mechanisms for meaningful data exchange in health information systems and discuss the prospects and implications for digital systems for public health.ResultsDigitalization of health and disability information system is an emerging need around the world. The transition from an analogue (and usually unsystematic information compilations) to digital health information system is a common observed trend which is expected to gain dominance in forthcoming decades. The information communication technology (ICT) developments have created multiple work streams to this field which are usually summarized as e-health. Further to the digital technology, the need to define and provide the content standards is a shared responsibility of the both content and technology stakeholders: one needs to define the content in a analogue form first, then convert into a digital application. Each health information rubric should be operationally defined and then be digitally represented in computerized information systems. To achieve this aim ontology as a computer science provides the scientific discipline and practical tools to define entities with their attributes and values. Creating the ontological basis for classifications will enable to represent the underpinning knowledge structure in an operational way; describe the logical rules as to how they relate to each other, identify measurable properties and provide a basis to share information both digitally and among humans irrespective of linguistic differences. In this way, health and disability information can be harmonized and aggregated at both individual and population levels.ConclusionsFormalized knowledge representation will allow for better construction of health and disability information, enable research and policy making by allowing meaningful exchange aggregation of data from multiple sources and enable science based decision-making.

In some developing countries health agencies and donors do not know how many people are dying or what the causes of death are. But with increased donor demands for transparency and performance measurement, countries are having to provide reliable health information and efforts are under way to help them. Countries that do not generate reliable health information or evidence lack the basis for making sound policy-decisions. "So you have a weak (health) sector with weak information. Therefore management decisions are often not rational; you don't provide enough information to get more resources, so it is vicious circle," said Bernhard Schwartlander, director of strategic information and evaluation at the Global Fund to Fight AIDS, Tuberculosis and Malaria. Schwartlander said that more than 90% of low-income countries do not have a well-functioning health information system, which is vital for generating basic health data. A health information system is essentially a collection of health statistics from various sources, used to derive information about health status, health care, provision and use of services, and the impact on a population's health. Until the 1990s, health information related mainly to clinical data and disease control and surveillance. Since then it has expanded to include population health data to determine major public health problems. The first aim of a health information system is to identify health issues, said Chris Scott, a development economist at the London School of Economics. It can also be used to inform health programme design and policy choice; it can help to forecast future health scenarios--as in the case of HIV/AIDS in Africa--and to monitor and evaluate the implementation of health policies, Scott said. For many low-income countries the problem is that even a rudimentary health information system costs too much. "As a result, decision-makers are unable to identify problems and needs and track progress, evaluate the impact of interventions and make evidence-based decisions on health policy, programme design, and resource allocation", according to a report by WHO's Health Metrics Network. This network is a new global partnership, hosted by WHO, that aims to tackle the health information bottleneck in low-income countries and help those countries build or consolidate their fledgling health information systems. "Health Metrics Network will work with countries to assess the current status, identify gaps, and develop a national plan for improving the health information system," said interim executive secretary Carla AbouZahr. The idea is that efforts to strengthen health information systems within countries would be financed by resources in the countries themselves, for example through multilateral development partners such as the World Bank, bilateral donors and global health initiatives such as the Global Fund and the Global Alliance for Vaccines and Immunization (GAVI). AbouZahr said that the Health Metrics Network hoped to sign agreements by October with a number of low- and middle-income countries to develop health information systems. Helping countries build and sustain health informations systems is a challenge. Scott said one way to address this would be for WHO to promote health information systems that are appropriate to the infrastructure, technological capacity and budgets of health ministries. In the poorest countries, it might be helpful to design and implement a simple pencil-and-paper-based health information system which contains data understood by and, therefore, more likely to be used by policy-makers at different levels, he added. "Launching directly a nationwide, computer-based health information system which is vulnerable to power failures, software crashes and inadequate IT skills of health staff is a high-risk strategy," Scott said. There may be a case in large federal states for experimenting with different types of health information systems in different parts of the country to see which one functions best in which set of circumstances, Scott said. …

BackgroundThe Sars-CoV-2 pandemic exacerbates existing inequalities across health care systems globally, both within countries and between countries. It also highlights, like no other crisis before, existing weaknesses in health information systems (HIS). This article summarizes these key challenges for HIS in times of a pandemic and beyond, with a focus on European countries. It builds on the experiences of a large consortium representing HIS experts in key positions in national public health or similar institutes across Europe.MethodsData were collected in bi-weekly conference calls organized by the InfAct project between February and June 2020. Emerging themes were clustered and analysed around a WHO framework for health information systems (HIS). We analyse strengths of HIS at two levels: (i) dealing with health information directly, and (ii) dealing with other parts of information systems that allow for a holistic assessment of the pandemic (including health-related aspects).ResultsThe analysis highlights the need for capacity-building in HIS before a pandemic hits, the relevance of going beyond health information only related to health care but taking a broader perspective (e.g. on vulnerable groups), the need for strong reporting systems on staffing numbers and in primary care. Further, data linkage emerges as a crucial precondition to identify unmet needs for essential health care services in a timely manner. Finally, room for innovation and digitalisation is key to be able to react flexibly in times of crisis. Trust for health information stakeholders is another important factor to create strong HIS.ConclusionsThe strengths and shortcomings of European HIS that have been observed during the COVID-19 crisis highlight the need for strong HIS beyond the crisis. The experiences reported leave as a central message that successful reactions to the pandemic are (also) grounded in strong HIS that ultimately not only benefit the health of the population but also create a number of economic and psycho-social benefits. Strong data reporting schemes may also support fine-tuning of containment measures during a pandemic as well as transition phases.

Background How does your Health Information System (HIS) measure up to others in the EU? How can you empower national HIS players with an objective peer-reviewed HIS assessment? Nine InfAct partners engaged in a capacity building exercise where experts in rotating groups of three countries performed peer assessments of each other’s national HIS. Using a WHO Europe adapted and refined tool, assessors analysed the HIS of a country (data collection, processing, analysis, dissemination and use) and exchanged practices in an intensive 2-day schedule of interviews with established key stakeholders. Objectives The aim of the peer assessment is three-fold: to test the feasibility of a peer-review HIS assessment, to map heath information inequalities across EU MSs, and to strengthen the knowledge of HIS players. Results Two cycles are now complete and the feedback is overwhelmingly positive - from assessors and hosts alike. So far, the HIS assessment has been a major success in its ability to systematically and concisely analyse a HIS. It identifies gaps in the HIS through desk review and interviews, and provides a SWOT analysis and SMART recommendations to address these gaps. Additionally, this exercise has shown the ability to increase stakeholders’ awareness of their role in their national HIS, and to build new networks within and between MSs. The exercise is also perceived as an opportunity for cross-fertilisation of ideas and exploration of methodologies on how to address specific challenges. This will stimulate actions to improve national HISs, and will lead to the identification of good practices which can then be used by other EU countries. Conclusions By bringing together key HIS stakeholders from different countries and stimulating the improvement of HIS and the exchange of good practices, InfAct contributes to capacity building in the EU, which in turn may lead to the reduction of health information inequalities between countries.

BackgroundA Health Information System (HIS) assessment is an evaluation of the functioning of the main elements that compose a national HIS. Assessors from nine countries performed peer assessments of each other’s national HIS in the Joint Action on Health Information (InfAct). The aim of this study is to evaluate the advantages and disadvantages of the InfAct peer assessment methodology as well as the different steps involved in this assessment process.MethodsEach peer assessment included a preparatory desk report, a country visit with semi-structured interviews with local stakeholders, a final report and a follow-up stakeholder meeting. A qualitative content analysis of the peer HIS assessment was performed based on 12 semi-structured interviews.ResultsThe main advantage of the assessments is its informal atmosphere, high degree of objectiveness and its networking opportunities. Disadvantages are its informal request format and setting for recommendation uptake. The peer assessment helped the assessors to broaden their understanding of the assessed and their own HISs, to gain knowledge on how to carry out an HIS assessment and to practice their organization, communication, reporting and negotiation skills. All steps of the HIS assessment are essential and each contributes to the enriching experience of the participants.ConclusionThe InfAct peer HIS assessment methodology strengthened capacity in national HISs by building up the knowledge and expertise in participating countries and as such addressed health information inequalities. This study confirms the value and relatively easy to implement methodology, and therefore recommends its wide and more systematic application across Europe.

Health Information Systems (HIS) are systems designed to collect, store, process, and provide information on both individual and population health, as well as on the management, organization, structure, and functioning of the health system. Their primary purpose is to support decision-making aimed at achieving national health goals. The research objectives were to describe the effectiveness of the Health Information System of Angola (HIS Angola), and to identify challenges for implementing and using HIS by users. The research was based on the assumption that the current form of the HIS provides only a minimal set of data necessary for formulating proposals for actions, policies, and practices aimed at improving the quality, financing, and management of health services, as well as reducing inequalities in access to health care. The research employed a bibliographic method and documentary analysis, combining a review of relevant literature on the role of the HIS in Angola and recommended strategies for its transformation and effectiveness, with a comparative analysis of health system indicators. The historical-logical method was used to explore the origin, development, and evolution of the HIS, while the deductive-inductive method was applied to examine the hypothesis regarding the effectiveness of Angola's HIS. For the descriptive qualitative and quantitative analysis, we will use standard WHO indicators related to health information systems. These include indicators on health policy (e.g., strategic plans and implementation of HIS), health service delivery (e.g., access and utilization), and health system performance (e.g., response time and service quality). Additionally, we will consider indicators reflecting educational (e.g., IT training for health professionals) and financial (e.g., investments in health care and health information and communication technologies) aspects. The results indicate that Angola's Health Information System (HIS) has improved through the transition to the DHIS2 platform, leading to enhanced data availability and better management of health services. However, significant challenges persist, including limited resources, inadequate infrastructure, uneven distribution of health personnel, and insufficient IT training. Indicators related to health service access and utilization, response time, and service quality suggest only modest progress, while financial investments remain inadequate to support further development of the system. Conclusion: Angola's HIS has the potential to significantly enhance health system management and service quality. However, to achieve greater effectiveness and improve health coverage and efficiency, sustained investment is needed in human resources, infrastructure, and training, along with a more equitable distribution of health professionals.

BackgroundAs the world approaches the final five years to achieve the Sustainable Development Goals (SDGs), a global polycrisis threatens progress on health and well-being. Populations experiencing vulnerabilities, particularly women, girls, and adolescents in low- and middle-income countries, shoulder a disproportionate burden. Universal access to sexual and reproductive health (SRH) services has seen mixed progress. In particular, adolescents are facing heightened risks such as early marriage, unintended pregnancies, and limited access to SRH services, compounded by gender norms and fragile contexts. Integrated, community-driven, and gender-transformative approaches are urgently needed, as are robust health data and information systems. However, fragmented systems suffer from poor data quality and underrepresentation of marginalized groups. Digital innovations hold promise for addressing these gaps but must be adapted to local contexts.Bridging the Know-Do GapThis supplement presents findings from the Cedar Cohort, an initiative supported by the International Development Research Centre across West Africa and the Middle East (2017–2023). The cohort's 16 implementation research projects explored SRH services for adolescents and health information systems, emphasizing gender equality, human rights, and knowledge translation.The articles are organized around three themes: (1) adopting contextual approaches rooted in local communities and their context-specific needs, (2) advancing gender equality and inclusion and (3) harnessing the transformational potential of data and information systems. Authored by LMIC-based researchers, the supplement provides concrete findings and localized insights into the transformative change possible when high-quality research is combined with an understanding of social, economic, political, and cultural factors at the individual, organizational, structural and systems levels.ConclusionThe collection of research projects featured in this supplement enriches our understanding of designing and implementing effective initiatives to improve health outcomes for women, children and adolescents. The findings emphasize that no singular solution exists for the multifaceted SRH challenges that continue to evolve. The projects in the Cedar Cohort offer critical insights into designing and scaling SRH interventions that are locally relevant, inclusive, and impactful. The current polycrisis necessitates a re-evaluation of global strategies, and the findings from the research projects in this supplement provide indications of ways forward.

This paper describes an empirical qualitative analysis of how knowledge and data generated through traditional health practices, specifically by traditional birth attendants, with respect to maternal and child health, define and control data quality in health information system. The aim is to gain an understanding of how knowledge and data crosses the boundary between traditional and modern sectors with varying practices, and how the existing mechanisms linking the two sectors can be strengthened. Using an interpretative approach, this research provides the health informatics and information systems community with an understanding of how bridging the divide between scientific and indigenious knowledge can improve data quality in a context where two different sectors exist; each utilising different types of knowledge. Concepts from community of practice theory were employed as the framework for analysis. We recommend that boundary crossing of knowledge and data between the two health sectors must be tailored from histrorical, cultural and modern perspectives, with an emphasis on: i) utilizing the historical‐cultural means of capturing data through chiefs and ii) the modern mechanisms of utilising health surveillance assistants as the link.

This chapter starts by exploring the definition of ‘health information system’, what different elements constitute a health information system and how are these linked. Next, health information system governance is addressed by applying common principles of good governance to a health information system context. The following section focuses on national, subnational and international health information systems in Europe. What are the characteristics of health information systems at these various administrative levels? What are the differences and communalities between national health information systems in European countries? How do the main international organizations structure their health information systems? The chapter ends with an outlook on current and future developments that are likely to have a substantial influence on the way health information systems operate.

Introduction:National Health Information System plays an important role in ensuring timely and reliable access to Health information, which is essential for strategic and operational decisions that improve health, quality and effectiveness of health care. In other words, using the National Health information system you can improve the quality of health data, information and knowledge used to support decision making at all levels and areas of the health sector. Since full identification of the components of this system – for better planning and management influential factors of performanceseems necessary, therefore, in this study different attitudes towards components of this system are explored comparatively.Methods:This is a descriptive and comparative kind of study. The society includes printed and electronic documents containing components of the national health information system in three parts: input, process and output. In this context, search for information using library resources and internet search were conducted, and data analysis was expressed using comparative tables and qualitative data.Results:The findings showed that there are three different perspectives presenting the components of national health information system Lippeveld and Sauerborn and Bodart model in 2000, Health Metrics Network (HMN) model from World Health Organization in 2008, and Gattini’s 2009 model. All three models outlined above in the input (resources and structure) require components of management and leadership, planning and design programs, supply of staff, software and hardware facilities and equipment. Plus, in the “process” section from three models, we pointed up the actions ensuring the quality of health information system, and in output section, except for Lippeveld Model, two other models consider information products and use and distribution of information as components of the national health information system.Conclusion:the results showed that all the three models have had a brief discussion about the components of health information in input section. But Lippeveld model has overlooked the components of national health information in process and output sections. Therefore, it seems that the health measurement model of network has a comprehensive presentation for the components of health system in all three sections-input, process and output.

Health information systems (HIS) are often deployed with inadequate security mechanisms and with users being generally pointed out as the weakest link. The launch of the Portuguese digital national identification smart card, the citizen card (CC), with strong authentication and digital signing capabilities, represents a new and viable economic opportunity for securing a HIS and at the same time foster the creation of a much more secure national health information infrastructure. Smart cards are being deployed in healthcare in several places around the world with highly encouraging results. Major programs have already been deployed with great success, although there are some well identified issues that need to be addressed. The CC is a versatile and secure card, with the latest in encryption and tamper resistance technologies, with standard support for a public key infrastructure (PKI). We present the advantages and enumerate some of the problems of using a smart card in a HIS, as well as the CC possible contributions in this area, namely as an easy, inexpensive, widely deployed way of using current technology to protect HIS security, and ultimately patient information, while at the same time fostering the expansion and deployment of inter operable HIS. Issues are identified that will need to be resolved and a detailed plan for further work to assess the level of impact the CC can have on the national HIS is indicated.

Health and higher education ministries in Saudi Arabia recognize the need for a highly qualified workforce specializing in health informatics and information management (HIIM). Therefore, KSA colleges and universities offer HIIM programs, health information systems, and health information technology. It is critical to investigate the HIIM professions and education in Hail City due to differences in these educational programs. This study examined HIIM professions and education in Hail City, Saudi Arabia, and provided strategies and recommendations. Based on a qualitative research approach, we interviewed 39 academicians, health informaticians, and other stakeholders in Hail City. The strengths, weaknesses, opportunities, threats (SWOT) framework was used to explore HIIM status and make recommendations. According to participants, HIIM Saudi professionals in Hail City have been growing and motivated, as have the university's undergraduate and postgraduate programs. Informants indicated several weaknesses, but many opportunities were found, including Saudi Vision 2030 and a new HIIM faculty at the University of Hail. According to our findings, relevant specialties control HIIM leadership while unspecialized academicians provide instruction. The extraordinary transmission of digital health in Saudi Arabia promises to enhance HIIM professions and education strengths and opportunities and reduce their weaknesses and threats.

BackgroundResearch networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union’s (EU) health information system as providers of health information and data. The aim of this mapping exercise was to identify and analyze EU research networks in terms of health data collection methods, quality assessment, availability and accessibility procedures.MethodsA web-based search was performed to identify EU research networks that are not part of international organizations (e.g., WHO-Europe, OECD) and are involved in collection of data for health monitoring or health system performance assessment. General characteristics of the research networks (e.g., data sources, representativeness), quality assessment procedures, availability and accessibility of health data were collected through an ad hoc extraction form.ResultsFifty-seven research networks, representative at national, international or regional level, were identified. In these networks, data are mainly collected through administrative sources, health surveys and cohort studies. Over 70% of networks provide information on quality assessment of their data collection procedures. Most networks share macrodata through articles and reports, while microdata are available from ten networks. A request for data access is required by 14 networks, of which three apply a financial charge. Few networks share data with other research networks (8/49) or specify the metadata-reporting standards used for data description (9/49).ConclusionsImproving health information and availability of high quality data is a priority in Europe. Research networks could play a major role in tackling health data and information inequalities by enhancing quality, availability, and accessibility of health data and data sharing across European networks.

A number of applications have been used for managing health data and information and tend to be fragmented between health programs in health offices. In consequence, the analysis and interpretation process becomes difficult since the data is scattered in separate sources. One of the solutions offered as an effort to synchronize and integrate health data in Indonesia is through implementing District Health Information Software (DHIS2). DHIS2 is an application that emphasizes data integration at the health office level. Faculty of Medicine, Public Health and Nursing UGM has been partnered with the Special Region of Yogyakarta Health Office to carry out community service activities in the context of utilizing DHIS2 for health data integration in the province. The implementation of DHIS2 was divided into 4 stages, namely workshop on data availability, socialization, and training of DHIS2; data mapping and customizing DHIS2; implementing health data integration; and dissemination, supervision, and evaluation. Six health offices were the target of community service activities in the province. DHIS2 has facilitated health office staff to analyse and visualize health information that is used for decision making and advocacy. This community service activity supports the government’s efforts to provide one-stop data and contributes to strengthening health information systems both nationally and regionally.