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Health information, research, evidence and knowledge

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Data are crucial in improving health.[1] The ultimate objective of collecting data is to inform health programme planning as well as policy-making and, ultimately, global health outcomes and equity. A well-functioning health information system empowers decision-makers to manage and lead more effectively by providing useful evidence at the lowest possible cost.

A health information system has been aptly described as "an integrated effort to collect, process, report and use health information and knowledge to influence policy-making, programme action and research". It consists of:

  • inputs (resources)
  • processes (selection of indicators and data sources; data collection and management)
  • outputs (information products and information dissemination and use).

The role of a health information system is to generate, analyse and disseminate sound data for public health decision-making in a timely manner. Data have no value in themselves. The ultimate objective of a health information system is to inform action in the health sector. Performance of such a system should therefore be measured not only on the basis of the quality of the data produced, but also on evidence of the continued use of these data for improving health systems' operations and health status.

The health information system[2]

The availability and use of information enables:

  • improved definition of a population
  • recognition of problems
  • setting of priorities in the research agenda
  • identification of effective and efficient interventions
  • determination of potential impact (prediction)
  • planning and resource allocation
  • monitoring of performance or progress
  • evaluation of outcomes after interventions
  • continuity in medical and health care
  • healthy behaviour in individuals and groups.

It also empowers citizens by enabling their participation in health care, policy and decision processes; and empowers countries and international partners by enabling better transparency and accountability through use of objective and verifiable processes.

Health knowledge gaps are where essential answers on how to improve the health of the people in Lesotho are missing. This is an issue related to the acquisition or generation of health information and research evidence. The “know-do gap” is the failure to apply all existing knowledge to improve people’s health. This is related to the issue of sharing and translation of health information, research evidence, or knowledge. Although there are major structural constraints, the key to narrowing the knowledge gap and sustaining health and development gains is a long-term commitment to strengthen national health information systems.


This section on Health information, research, evidence and knowledge is structured as follows:

Contents

Analytical summary

Enabling policies and strategies exist to support the information society. In Uganda, a national information and communication technology policy framework has been in place since 2002. Similarly, mechanisms exist that provide access to health information for lay users as an empowerment strategy to demand high-quality care. Formal capacity-building in information and communication technology in educational institutions at all levels sustainably complements this strategy.

A sector-wide approach adopted in the Health Sector Strategic Plan II 2005/06–2009/10 (HSSP II)[3] incorporates mechanisms that emphasize better use of resources and a common reporting framework for improved planning and accountability. The Health Sector Strategic and Investment Plan Monitoring and Evaluation Plan for 2010/11–2014/2015[4] aims at establishing a system that is robust, comprehensive, fully integrated, harmonized and well coordinated to guide monitoring of the implementation of the Health Sector Strategic and Investment Plan and evaluate its impact.

All partners are expected to buy into the Monitoring & Evaluation Plan, which is envisaged to be the basis for improving the quality of routine information systems as well as institutionalizing mechanisms and tools for measuring quality of both facility and community-based services. To ease compilation and storage, all data constituting the health information subsystems are required to be collected using the standard tools developed and provided by the Ministry of Health. A recent data quality analysis report by WHO confirms that, overall, the data produced at health facilities remains sufficiently valid.

Retrieval of existing global health information is facilitated by several search engines but curtailed by the limited access to high-speed Internet services. However, there is increasing availability of information and communication technologies, particularly of the Internet and mobile telephony, and this has improved the prospect of narrowing the knowledge gap in the country. Several training institutions are able to access electronic journals through the HINARI Access to Research in Health Programme. This is complemented by electronic information supplied by a number of individual publishers and services such as BMJ Journals, the Free Medical Journals, HighWire, etc.

Owing to limited and inadequate funding, the shortage of human resources and inadequate logistics, research in Uganda has mainly been donor driven, with well over 90% of health research funding being attributed to external sources. Two good practices in the direction of improving information sharing in the sector are the requirement for research to be coordinated by one body and for the provision of a centralized electronic database. The Uganda National Health Research Organisation is mandated to coordinate research in the country.

The national health information system has provided standardized formats for health data collection, which enable electronic compilation, storage and retrieval. The standardization of health information data collection formats and the deliberate strategy to promote buy-in from all users will go a long way in integrating the health information system at all levels of the health system . Although the current system is largely paper based, computerization of data through use of District Health Information Software 2 (DHIS 2), will improve the completeness and timeliness of data submitted.


Context

Enabling environment

A national ICT Policy Framework is in place since 2002. The policy looks at various categories of information from different sectors including health, which are aimed at empowering people to improve their living conditions. It incorporates information related to information as a resource for development, mechanisms for accessing information, and ICT as an industry, including e-business, software development and manufacturing[5] . ICT policies adopted at the national level from 2003 were geared at ensuring harmonization and coordination of initiatives for use of ICT in the health care delivery with key stakeholders, notably: Uganda Bureau of Statistics (UBOS), Birth and Death Registration Bureau (BDR), UNICEF, Danida, WHO, UPMB, IPH, UCMB, National Planning Authority. The Public Private Partnership for Health draft policy has facilitated clarity of the collaboration between the two sectors, further enhancing the streamlining of priorities and actions for ICT.

The Uganda Patient’s Charter aimed at empowering patients to demand for high quality health care among other things was a joint effort of the Ministry of Health and the civil society led by Uganda National Health Consumer’s Organisation (UNHCO). The latter uses a rights-based approach to contribute to an improved quality of life of all people in Uganda. It has an active website open to the general public and is also linked to social networks – Face Book, Twitter and RSS. The Voices for Health Rights (VHR) is a coalition of 14 civil society organisations[6] working in health and health rights related activities initiated in 2006 as a united front to advocate for good health policies and implementation of best practices[7] .

The existence of the Public Procurement and Disposal of Assets act is in place to ensure value for money since compliance is a requirement for all sectors. The health sector procures ICT on the basis of a three year rolling plan. Lack of funding has made it difficult to establish adequate institutional capacities in terms of human resource, and infrastructure such as IT to enable timely flow of information for action. This lack is more pronounced for routine systems at sub-national levels, constraining data analysis and the packaging of this information for action and policy.

Infrastructure

Uganda’s digital backbone was constructed by both the incumbent telecommunications operator, Uganda Telecom Limited (UTL), and the second national operator, MTN Uganda. The networks were planned to link virtually every regional centre including district headquarters and towns, creating a national communication backbone. The predominance of GSM by MTN created potential hubs for a broadband wireless system across the nation[8].

Reducing costs was seen as critical to enhancing access to ICT in the health sector and was therefore part of the 2002 National ICT Policy Framework. In 2005, a national plan was elaborated with targets to expand connectivity within the sector. The Universal Access Fund is noted as an important initiative that provides increased rural connectivity through access facilities such as pay phones, telephone centres and Internet access points. The target was to have all health centres connected with reasonable (i.e. 128 kbps) bandwidth by 2010. Additionally, the Rural Communication Development Fund (RCDF) was established to support the development of a commercially viable communications infrastructure in rural Uganda, thereby promoting social, economic and regional equity in the deployment of telephone, Internet and postal services. The RCDF was designed to be funded from a 1 per cent levy on operators’ gross annual revenues but has also benefited from contributions from the government and the World Bank.

Cultural and linguistic diversity and cultural identity

The multitude of languages in Uganda poses a challenge in this field. The government is addressing this by involving various stakeholders in the effort to translate health content into multiple languages[9].

Existence of multilingual projects, translation and cultural adaptation

The liberalization of the media in 1993 allowed for a wider variety of local content in both radio television stations. The Broadcasting Council in 2004, consulted widely with a view to promoting the development of electronic multicultural health content.

Content

Health professionals have access to online health content through international and national electronic journals. For example, the Research Commons facility has been opened at Makerere University Library to provide interactive research learning tools to eligible students and researchers.

Capacity

ICT skills courses have been a part of university curricula for health sciences students since 1983 whereas ICT skills programmes were included in the on-going training of health-care professionals since 1987. In 1995 Uganda introduced health sciences courses through eLearning for health professionals (in training and practice). These actions contributed to the transfer to ICT-based work skills and routines among health professionals.

An example of an initiative to introduce and expand the use of ICT in rural schools is the ‘Maendeleo Foundation’ situated in Kampala and Seattle. The intervention is a mobile van equipped with three solar panels, a battery, ten folding chairs, five tables, fifteen Intel-powered Classmate PCs and two teachers. This Mobile Solar Computer Classroom (MSCC) has the capability of training over 100 students in a day. Furthermore, the intervention includes a library of localizable training software that allows students to learn at their own pace, in their own language.


Structural organization of health information

Organization and management

A Sector Wide Approach (SWAp) adopted in the second Health Sector Strategic Plan (HSSP II) incorporates mechanisms that emphasize better use of resources and a common reporting framework for improved planning and accountability. This framework includes: Memorandum of Understanding, Joint Review Missions (JRM), National Health Assembly (NHA), and Health Policy Advisory Committee (HPAC) as vehicles for improved sector performance accountability. In 2010, the Government, represented by MoH, signed a Compact which provides a partnership framework for implementing the HSSIP.

Overview of the flows of information

The HMIS provides the bulk of data for monitoring performance of the health care system. For instance it informs the Annual Health Sector Performance reports based on an assessment of hospital performance and district league table. The Health sector has a comprehensive and well defined indicator set that includes requirements of the Millennium Development Goals (MDGs).

At all levels, a core-pipeline of essential indicators is monitored through routine health-facility based information systems (IDSR and HMIS). However, the scope of the indicators places a high demand on the low human resource for Health Information Systems at sub-national levels. For example, severe inadequacies are reported in terms of capacity (skill and infrastructure), resources to support data capturing and management, availability and appropriate disaggregation, dissemination and utilization. In particular, the lower administrative levels chronically lack the capacity to capture and report vital events such as community births and deaths. Another challenge is that various and parallel data collection systems are introduced by development partners in a piece-meal manner and often lack coordination and a sense of ownership at these same planning levels. Population-based data systems such as the Census, the Uganda Demographic Health Surveillance (UDHS), the Panel survey and the Living Condition Monitoring Surveys (LCMS) complement the indicator base by collecting comprehensive indicators with adequate measurement of impact.

A validation exercise conducted in 2008 established various mismatches at the health facility level between data in the HMIS monthly reports and data in the health unit register/tally sheets, data in the district database and the district HMIS 123 monthly reports and also between figures reported to the Resource Centre and the data kept in the district database.

Causes of such mismatches were identified as incompleteness of registers especially the maternity register, lack of complete set of recorded tools (tally sheets) at the health facility level due to poor archiving practices, incomplete recording in the HMIS reports, failure to maintain databases at all levels, records not kept in one central place, poor handwritings in the registers, poor filing practices. Computerisation of data through use of DHIS 2 which is currently being rolled out, will improve completeness and timeliness of data submitted.

Specific regulatory framework

The Health Sector Strategic and Investment Plan (HSSIP) Monitoring and Evaluation (M&E) plan for 2010/11 - 2014/2015 aims at establishing a system that is robust, comprehensive, fully integrated, harmonized and well-coordinated to guide monitoring of the implementation of the HSSIP and evaluate impact. All partners are expected to buy into the M&E plan which is envisaged to be the basis for improving the quality of routine information systems as well as institutionalizing mechanisms and tools for measuring quality of both facility and community based services. The cost of implementing this M&E plan is estimated at about 25 billion Uganda shillings[10] (10,869,565 USD).


Data sources and generation

Censuses

Uganda conducts a population census every 10 years and the last one was done in 2000. The next census is planned for 2012. The census covers the core health indicators. The dissemination of Census results is fairly adequate.

Civil registration and vital statistics systems

The Ministry of Justice hosts a Bureau of Births and Deaths Registration which is mandated to collect data on vital events, including those related to health at community level. The lack of community involvement and engagement hampers institutionalization of births and death registration at this level. Thus there is no system in place to capture births and deaths at this level. UNICEF and Plan International had on a pilot basis conducted vital registration at community levels. Although good lessons were learnt, cost effective replication and scale up were not feasible.

Health surveys

The Uganda Demographic and Health Survey (UDHS) is a national survey carried out by UBOS with the active involvement of the Ministry of Health. The last UDHS begun in May 2011. The primary objective of this survey is to provide up-to-date information for policy makers, planners, researchers and program managers, to use in the planning, implementation, monitoring and evaluation of population and health programs in the country. The UDHS provides detailed information on fertility; family planning; infant, child, adult, and maternal mortality; maternal and child health; nutrition; and knowledge of HIV/AIDS and other sexually transmitted infections; gender-based violence; disability. The UDHS provides important information for health planning but does not allow for valid extrapolation of findings to smaller population clusters. Other population surveys that are planned in the lifetime of the HSSIP include: Uganda National Panel Surveys (UNPS), Uganda National Household Survey and National Service Delivery Survey (NSD). The UNPS will collect information on Socio-economic characteristics at household, individual and community levels. Its main aim is to generate information on annual estimates of outcomes and outputs in the key policy areas as well as providing a platform for the experimentation and assessment of national policies and programs. The Survey will provide data on two of the core HSSIP indicators;the contraceptive prevalence rate and health worker absenteeism. Analysis and dissemination of the findings will be carried out by UBOS and report availed to the MoH by October every year[11] .

The UNHS is conducted biennially and is the main source of statistical information for monitoring poverty levels, trends and related welfare issues. The NSDs are institutionalised by the Government of Uganda and have been carried out every four years since 2000. The overall objective of this survey is to provide a comprehensive assessment of the trends in service delivery in the areas of Health, Education, Justice, Law and Order, Agricultural services, Transport services (Road Infrastructure and Water transport), Energy use, Water and Sanitation, Public Sector Management and Accountability. They monitor and evaluate the delivery of public services and obtain feedback from service recipients, regarding their efficiency and effectiveness. Other surveys that will be commissioned by the Ministry of Health include: the Antenatal HIV Sentinel surveillance, Uganda HIV/AIDS sero-behavioral survey, Malaria indicator survey, availability of the six tracer medicines study, client satisfaction surveys, Service availability and readiness assessment (SARA), health and human rights, and gender survey, and other operational surveys.

Surveillance systems

Surveillance through active search for Measles, Neonatal Tetanus and Acute Flaccid Paralysis is another separate and functional Information system supported by UNEPI. These illnesses and conditions targeted for eradication and/or elimination are reported on weekly by all levels of health facilities. In some districts the health units have been authorized to use operational funds to submit surveillance reports by short messaging text to the Ministry of Health[12].

Systematic documentation of contextual and qualitative data

Although there is a regulation for all health research that incorporates contextual and qualitative data undertaken in Uganda to be filed with the Uganda National Health Research Organisation (UMHRO)[13] as well as the Council of Science and Technology (UNCST), this is still not fully complied with. Thus there is a lack of a national data base for the contextual and qualitative research which makers retrieval extremely difficult. Most of this research is available as grey literature at the source institutions or with the individual researchers.

Health research

The Mid-term review of the HSSP II recognized that a lot of research is conducted in Uganda. The Uganda National Health Research Organisation (UNHRO) is mandated to coordinate all health related research in Uganda. The Quality Assurance Department (QAD) is the Ministry of Health focal point is responsible for coordinating the sharing of research findings by liaising with research institutions, universities and UNHRO. The District Health Officer at the sub-national level is expected to promote and coordinate research at district and lower levels. Within the Health Sector Strategic and Investment Plan, research is focused on supporting the monitoring and evaluation requirements of the agreed upon sector targets. UNHRO has a website that enables all research that is uploaded to be viewed by users of the Health Information System (HIS).


Data management

Data collection

Data collection methods are a combination of quantitative and qualitative methods. Most data in respect of some indicators are collected annually, whereas survey-based indicators are collected at baseline, at mid-term where possible and in the last year of HSSIP implementation.

The specific tools and techniques among others, include; the HMIS; Human Resource Information System (HRIS); Logistics Management Information System (LMIS); and Integrated Financial Management System (IFMS). Periodic reports include facility service delivery reports, quarterly sector performance review, National Health Accounts (NHA) reports, periodic monitoring (supervision) reports, annual sector performance review reports, research reports, mid-term review and end-term evaluation and independent evaluation reports. Specific questionnaires are designed for surveys (baseline, mid and end term), case studies, field visits and socio-economic studies (UDHS, UNPS, NHS, NSDS). Specific formats are used for document reviews, stakeholder meetings, performance review forums and management meetings. Geographical Information System (GIS) are used to enhance documentation and accountability where applicable.

Data compilation, storage, management

The Ministry of Health (MoH) houses the central database for reporting on progress of the HSSIP. The Resource Centre at the MoH is mandated to serve as a repository for all service delivery data and information at national level. This implies that all health service delivery data and information should be routed through the MoH Resource Centre for validation, analysis & synthesis, and dissemination. To ease compilation and storage, all data constituting the Health Information sub-Systems are required to be collected using the standard tools developed and provided by the Ministry of Health. The HSSIP Monitoring and Evaluation Plan recognizes the need for consensus on the establishment and location of a back-up data storage facility for the central repository of information. In addition, there are other databases housed under donor projects e.g., Star East – Community data on service delivery, UNICEF – the U report. Plans are underway to mainstream these in line with the M & E plan.

Data sharing and access

Data communication follows the existing MoH coordination structures. The Ministry of Health Website (www.health.go.ug) is the public domain for relevant information collected by the MoH Resource Centre. At the national level, quarterly sector performance review reports are presented by various technical working groups and central level institutions during the quarterly review meetings. Districts also generate quarterly assessment reports for their level. Both the centralised and decentralised HMIS data bases can be accessed at source once the appropriate permission has been granted. However information with individual person data can only be accessed with the express permission of the Uganda National Council of Science and Technology.

The Annual Health Sector Performance Report (AHSPR) which is prepared based on data reported by health facilities and statistics generated by other means such as household surveys, case studies and administrative records (minutes, supervision reports, etc.) is an important mechanism for information sharing between those who generate data, end users and decision makers.

Thus the AHSPR provides the background and in-depth information for annual reviews and disease specific reports. It is presented and discussed at the annual sector Joint Review Mission, attended by key policy makers, departments, Professional Councils, representatives of local governments, other Health Related Ministries, UN agencies, development partners, non-state implementing partners (PNFPs, CSOs, and private providers), representatives of Health Consumers Organizations and CSO advocacy organizations.

Data quality and analysis

The studies on HMIS functionality and data validity carried out as part of the HSSP II MTR (2007) confirmed a number of challenges. These include: low and declining trends for timeliness of monthly reports. Moreover, there are mismatches of data between the key points of data collection through the various management levels (HSD, district), programs and the Resource Centre (RC). The major constraints include the markedly limited government budget funds for HMIS leading to over reliance on donor project resources often associated with piece-meal initiatives. Moreover, Human Resource for HMIS remains inadequate at all levels of the structure. A more recent data quality analysis report by WHO confirms that although the performance in 2010/2011 has declined as compared to the previous year, overall the data produced at health facilities remains sufficiently valid[14] .

Estimation methods

The HSSIP M&E uses a number of proxy methods to estimate health service delivery performance. Chief among these is the District League Table which is published annually in the sector performance report. Other parameters where estimation measures are applied include: poverty analysis, gender index.

Statistics

The Uganda Bureau of Statistics (UBOS) is charged with the overall coordination of production of information in the country. The bureau collects research-based data and Vital Registration (VR). However the registration takes place at community level and in health facilities especially hospitals. There is a provision for this information to be uploaded onto the centralised national HIS website . Revitalisation of registration of vital statistics like deaths and births is the responsibility of Ministry of Justice.


Access to existing global health information, evidence and knowledge

Availability and use of indexes of local, non-English, and unpublished

While most academic and research institutions in developed countries boast of vast libraries, broadband internet access, and access to thousands of international journals, both printed and electronic, libraries in developing countries have found it increasingly difficult to provide even the basic minimum of information for their readers. Acquisition budgets have been cut drastically, often to zero, making many libraries dependent on charitable donations provided by agencies.

Limited access to existing global health information in Uganda has been caused by the inability to retrieve information in a timely fashion owing to the lack of computer technology or an internet connection. The information is sometimes inaccessible because it is not in a form that is comprehensible to the user – for example when a non-technical audience is presented with materials in technical jargon, or in a language not spoken by the audience.

Most institution libraries in the country have a rich collection of local materials and research works (grey literature or unpublished work available in different forms: theses and dissertations, research articles, research reports, conference and workshop reports) relevant as reference sources of information for further research and teaching. However most of this has not been easily accessed due the form in which they are. Makerere University library recently launched a University’s institutional repository under the Uganda Scholarly Digital Library (USDL) project which uses open source software (DSpace). The DSpace system provides for indexing of information by text, author, title, subject, keyword, abstract and full-text (when customized) and this has eased access to grey literature in the country.

However, even with better availability of indexes, a wealth of information from countries of the Region is not accessible because either it is never published in any form or even if it is published, it is generally not indexed.

Availability and use of search engines, networking platforms

A number of search engines are available in Uganda but given the limited access to high-speed internet services they are not widely utilised. There is however an increasing availability of information and communication technologies, particularly of the Internet and mobile telephony and this has improved the prospect of narrowing the knowledge gap in the country.

Availability and use of open access journals

Biomedical researchers in Uganda just like in other developing countries are disadvantaged by the lack of visibility of published research as most national or local medical journals are excluded from standard international indexes and databases. Whether such exclusion reflects any bias against the country journals per se is controversial, but the quality of many such journals is bound to be affected by the quality of author input, financial income, editorial resources and many other factors, all of which mitigate against journals published in Uganda. Many local journals are not indexed simply because they are unable to publish on a regular basis. This also means that users lack confidence and will not subscribe to the journals.

The emergence of thousands of online journals has created an unprecedented opportunity to enhance access to information for researchers in the country. The marginal costs of providing electronic access to subscribers are minimal, and the advantages of providing free or very low-cost access to electronic journals are now recognized by development agencies, international publishers, librarians, and the scientific community to outweigh any perceived disadvantages and limitations.

Access to copyrighted publications

Copyright regulations and cost of information are important factors that limit full access to existing global health information. Access to copyrighted publications has improved with the increasing number of publishers and peer reviewers in the country.

Organisations like the Council on Health Research for Development (COHRED) hold the copyright to their publications and web pages but encourage duplication and dissemination of these materials for non-commercial purposes. Proper citation is requested and modification of these materials is prohibited. Permission to make digital or hard copies of part or all of this work for personal or classroom use is granted without fee and without a formal request provided that copies are not made or distributed for profit or commercial purposes and that copies bear this notice and full citation on the first page.

INASP's Programme for the Enhancement of Research Information (PERI) and WHO's Health Inter Network Access to Research Initiative (HINARI) are two initiatives responding to the expressed needs in Uganda. Through HINARI, several training institutions are able to access electronic journals. These are complemented by supply from a number of individual publishers and services such as BMJ Journals, The Free Medical Journals Site, High Wire Press, etc.

Regulatory frameworks on intellectual property

Much as Uganda has got regulatory agencies, they frequently lack the human resources needed to engage in standards-setting and conformity-assessment activities in support of access to global information. Given their expense, databases and journals are not available, nor are the information systems needed to track processes and ensure transparency. Operational activities of the country’s regulatory authority do not always permit inspections, adequate supply chain management, monitoring, and control of information. The country has not fully developed national policies, strategies or regulatory frameworks that are necessary for establishing common technical infrastructure, interoperability and standardization protocols. Regulatory decisions are often based on values held by decision makers. The net result is a framework that has many laws but not the capability for conformity assessment and/or enforcement.


Storage and diffusion of information, evidence and knowledge

Free information flow between the public and private sectors, as well as from the government to the public, ensures accountability and transparency in the health system. A major barrier to this in Uganda is the lack of institutionalised platforms for researchers, policy makers and civil society to engage in knowledge generation and translation.

Availability and use of health libraries and information centres

Although health libraries are rather limited in Uganda, the Albert cook medical library at Makerere and the Ministry of Health Resource Centre offer quite some information to the public. There are also some other autonomous institutions where health information can be accessed.

Availability and use of publications in appropriate formats and languages

In Uganda, health literature is presented in books, journals, theses, reports, websites, etc. that are published, semi-published or unpublished. However, it should be understood that knowledge that is presented in a language not spoken by a community or individual is knowledge not accessible. Most of these publications are not available in the local languages and are therefore not understood by the majority of the population. More so, given the limited accessibility to internet services in the country, the information that is published on websites is not widely accessible let alone utilised.

Consolidating and publishing existing evidence for policy and decision

Despite the volume and variety of data generated through the routine health management information system as well as research, the information is systematically under-analysed and under-utilized. Most of the health information and research agenda is donor-driven and this can easily divert national investments to international priorities. Science-and-technology-driven, externally supported research does not usually give priority to the health sector and policy relevant research, instead researchers give priority to publishing in international high-impact journals that favour basic or fundamental research over operational studies focusing on the health sector. Most institutions which happen to be at the fore front of research in the country follow policies and career structures that promote publication based on quantity (e.g., number of items published in a peer-review journal) rather than relevance to national priorities. Most of the existing evidence and knowledge is not utilized for action because policy and decision makers may not value the evidence presented or they do not understand the evidence, trust it or there are other competing interests (e.g. a pressure or lobbying group).

The other challenge is the translation of research findings into policy and the dissemination of results as there are no regular meetings of researchers and policy makers to turn research findings into policy[15]. Thus, decision-makers do not have the information required to identify problems and needs, make evidence-based decisions on health policy and allocate scarce resources optimally. At the same time, the presentation of data is generally aimed at specialists and other experts. Too often, little effort is made to make the information understandable to policy-makers, frontline health workers, non-health specialists or the public.

Mapping and sharing experiential knowledge, including best practices

Mapping and sharing of best practices within the sector is principally facilitated by the presence of Sector Wide Approach (SWAPs). The Health Sector Strategic and Investment Plan (HSSIP) defines the common goal and objectives of the Ministry of Health and her Development Partners (DPs). Review of implementation of the HSSIP at both Technical (April) and Joint Review (October) Missions provides opportunities not only to assess progress on set objectives but also to analyse best practices that have made major contribution to the attainment of set targets. The Annual Health Sector Performance Report (AHSPR) that documents this progress is discussed at the Joint Review Mission attended by managers at all levels of the health sector as well as a wide range of DPs and other non-health sector partners. This platform has increasingly been used to share findings from pilots within the health sector that are related to the HSSIP goal and objectives.

Indexing of local publications in international indexes

In spite of the extensive effort in publishing research findings in the country, there is lack of central coordination for these publications. The Uganda National Health Research Organisation (UNHRO) which is mandated to coordinate research in the country is limited by the different interests of the researchers who are more answerable to their donors than the organisation. As a result most of the publications are not indexed. Education institutions especially universities have however made some effort towards indexing of some of the books and online journals.


Research

Health systems research (HSR) aims to improve the health of the people by providing relevant information to health managers and policy makers at all levels to assist them in adequate decision making. The concept of HSR therefore is important in addressing the problem of poor utilization of research results. A lot of research is conducted in Uganda by several institutions e.g. universities, autonomous institutions and other public institutions with diverse affiliations and districts and the results of these studies are supposed to inform decision making hence contribute to improving delivery of and access to health care.

Stewardship

Two Ministries – Health and that of Office of the president are involved in the management of health research. On the other hand, two statutory bodies – the Uganda National Council of Science and Technology (UNCST) and the Uganda National Health Research organisation (UNHRO) are mandated to coordinate health related research in Uganda. In addition, the National Drug Authority and the National Council for Science and Technology also play regulatory roles.

Currently, the country’s health research priorities focus on; Water, sanitation and environment, Maternal, child health and nutrition, HIV/AIDS, Malaria, Tuberculosis (TB), other communicable diseases, Non-communicable diseases, Health policy and health systems, and Drug use studies. However, there is no clearly defined process for determining research priorities, reviewing progress towards addressing them, and continuously reviewing and revising them. As a result there is no clear process of defining, communicating, monitoring and revising the health research priorities.

The conduct of research by various organisations in Uganda has so far been hampered by the lack of a policy framework, an uncoordinated priority setting of the research agenda, shortage of human resource and inadequate logistics. The health research support of development cooperation agencies is often limited, not harmonized between agencies and unaligned with the country’s health and health research priorities. There is no formal process through which policy-makers access health research findings for decision-making purposes. While forum in which scientists share their results and disseminate their findings do exist, there is still lack of a formal mechanism for informing policy.

Health research Ethics Committees and National Guidelines for Research Involving Humans as Research Participants are in place. Institutional Ethics Committees exist and include the Scientific Ethical Committee of the UVRI and the Medical School Ethical Committees of the Mbarara University of Science and Technology, Gulu University and those of the different health colleges of Makerere University.

Financing

Uganda like many other low-income countries faces a massive under-investment in health research relevant to its needs. Funds for research are generally scarce and most of the institutions that carry out research on health issues do not have a budget line for research. Even where there is a budget line for research, the percentage of the institutional total budget allocated to research is minimal. The national budget allocated to health research comes from the money allocated to health. Due to limited and inadequate funding, shortage of human resource and inadequate logistics, research in Uganda has mainly been donor driven though a few Ugandan private sector groups have provided some funding for health research. . The main donors for health research include: the USA government through the Centres for Disease Control and Prevention (CDC) and the National Health Institutes (NIH); USA Foundations, especially the Gates Foundation and the Rockefeller Foundation; Sweden (Sida/SAREC); UK (DFID); Canada (IDRC); Denmark (Danida); the Netherlands (DGIS); Norway (Norad); WHO; World Bank and UNICEF.

Four key government research institutes currently fall under the MoH and they include; The Uganda Virus Research Institute, The Uganda Cancer Research Institute, The Uganda Natural Chemotherapeutics Research Laboratories, and Tropical Diseases Institute. Others are; Joint Clinical Research Centre that is jointly run by the government and the Military, and academic institutions such as the Makerere University college of health sciences.

The actual amounts for money given directly to the institutions and individuals for health research are not known by the Ministry of Health, and can only be found through the respective institutions which makes monitoring rather difficult.

Non-governmental organizations are not highly involved in health research. Most of them focus on implementing programmes, and most of their research activities consist of baseline surveys and follow-up monitoring and evaluation surveys.

Creating and sustaining resources

Although no national human resources for health research strategy exists as yet, there exists a Human Resource for Health Policy launched in financial Year 2005/06. The responsibility of the pre-service training of health workers lies with the Ministry of Education and Sports (MoES) while the Ministry of Health retains a role in defining the standards and in guiding the MoES in the cadres and number to be trained. The training programmes within the main medical academic institutions do provide capacity building for health research. However, the capacities for training remain insufficient to meet the research capacity needs for the health sector.

Research output

Although these are still limited in Uganda, some institutions have helped to increase access to research findings. For example, AIM an international database providing access to African health literature has helped to improve visibility of health and biomedical research carried out in African countries. In Uganda, the College of Health Sciences and the Albert Cook Medical Library host a local database (Uganda Health Literature Database), from which bibliographic information is sent to the AIM database. The Document types indexed in the AIM database include health documents published in, and related to Africa, compiled from: Journal articles, Technical reports, Statistical reports, and monographs. Some of the information in the AIM database is grey literature (as provided from research findings), while some of it is published and linked to the full-text documents.

Most of the operational research is carried out by NGOs and these focus mainly on the evaluation and improvement of their programmes. As such the results are not widely disseminated to be able to influence policy. Given that the national budget does not cater so much for research, it becomes rather difficult for the statutory bodies mandated to coordinate the research activities to review and analyse the evidence generated by the private sector and yet this forms the majority of the research carried out in the country.


Use of information, evidence and knowledge

In Uganda, ICT role use and penetration in the country is still very uneven. For example, while many hospitals, clinics and firms in Kampala have modern hardware, useful software, and internet access, outside Kampala, even large hospitals may have only limited access to modern IT and only a handful of staff are likely to be trained in its use. Thus opportunities for e-medicine and/or telemedicine are not fully maximized.

On the other hand the presence of improved ICT in higher medical and health institutions has revolutionized the access to both national and international information in health, enriching the quality, relevance and evidence base of locally generated scientific articles. Institutions of higher learning – in particular the Makerere University School of Public Health (MakSPH) have deliberately included journalists in their fellowship training programmes. The latter has greatly improved the presentation of health matters in the media.

Formatting and packaging of evidence for policy and decision making

Even though the Government of Uganda recognizes health research as a critical tool for evidence based policy and decision-making, legislation specific to health research is currently not in place. The country lacks legislation that deals specifically with health research[16] . The legal and regulatory system in place encompasses all health actions and actors in the health system for both the public and private sectors. It covers the framing of all the laws, regulations and policies governing the health sector, as well as the means of ensuring compliance with them.

Effective communication of health research results remains a challenge, research findings are not widely disseminated and no formal systematic mechanism tracks research conducted and key research findings, or ensures that policy makers have access to research findings for decision-making purposes.

Sharing and reapplying information and experiential knowledge

The health system in Uganda has in the last few years changed from a centralized system with hierarchical reporting to a decentralized system consisting of geographically spread health centres and hospitals with various roles. The development of health plans, policies and service delivery being channelled from the national level through the district, health sub-district, health centre right up to the community. While Health systems in a centralized system only used to focus on morbidity and mortality reporting from individual health units to the district and national level, the introduction of a decentralized system brought significant change, with emphasis by the Ministry of Health (MOH) on the implementation of health management information systems (HMIS) which emphasize the use of information at the point of collection. Much as the decentralized health care system makes the management and process of planning easier, it requires an effective feedback system, supervision, monitoring and reporting if the goals of the system are to be achieved. Through decentralization more freedom and responsibilities are given to each point of care meaning that more skills are demanded of primary health care managers, concerning the data and information handling at all levels of a health care system. In order to improve the efficiency and effectiveness of health services provided in such a distributed structure, it is vital that information is shared since it is a vital resource to the management of any organisation. Effective data collection and sharing of information can be enhanced through the application of information and communication technologies whose usage is still very low in the country’s health sector.

Policy and decision makers' articulation of their need for evidence

While there seems to be widespread enthusiasm for science and technology (S&T) among parliamentarians with many not only expressing an interest in scientific topics during debates but also keen that these debates should be evidence-based, the achievements seem to be less impressive. For example, to date science-related issues have received little attention in parliamentary debates.

There is limited availability of relevant information, with parliamentary library staff having difficulty accessing both in-country and external sources of scientific information. And in some cases, parliamentarians have problems in distinguishing reliable from unreliable scientific evidence. Of equal concern is the fact that factually incorrect statements sometimes go unchallenged.

Policy and decision makers' participation in the research agenda setting process

Due to limited and inadequate funding, shortage of human resource and inadequate logistics, research in Uganda has mainly been donor driven with well over 90% of health research funding being attributed to external sources. The funds are sent directly to the research institutions, usually without explicit requirements that research be aligned to national priorities. Donors’ ability to effectively align with the country’s strategies tends to be restricted by a lack of comprehensive and operational health research policies and strategies. As such researchers have the obligation to report to their funders as opposed to the policy makers. This therefore leaves policy and decision makers out of the research setting process.

Decision-makers do not have the information required to identify problems and needs, make evidence-based decisions on health policy and allocate scarce resources optimally.

Policy and decision makers' capacity to access and apply evidence

The MOH has a simple digital library in place, but software limitations keep it from meeting the needs of the decision-makers. The software can only be used from a single desktop computer at the MOH Library, which is not connected to a network. The proprietary software only supports PDF-format documents, and storage space is limited to the desktop's hard drive. Furthermore, the system is vulnerable to any computer failures because there are no backups or dedicated maintenance.

The capacity of policy and decision makers to engage with researchers in institutionalized platforms e.g. public health debates is further curtailed by the gap between the former’s enthusiasm for science and the ability to put it into practice. In particular, most policy and decision makers are not only unfamiliar with scientific evidence, but also lack a critical awareness of both its power and its limitations.

The Health Policy Analysis Unit (HPAU), instituted in 1999 is integral to the Ministry of Health. The HPAU has since conducted policy-relevant research and analysis, enabling it to provide informed policy advice to decision makers as well as technical assistance in policy formulation and evaluation. However, its influence to review and make recommendations for decision makers has declined due to a markedly diminished budget[17] .

Availability and use of networks and CoPs for better use of evidence for policy and decision

Uganda is fortunate in having access to or belonging to several networks that support the better use of evidence for policy and decision making. The Regional East African Community Health-Policy Initiative (REACH), approved by the 10th Full Council of Ministers in 2005 is an institutional mechanism or “knowledge broker” designed to link health researchers with policy-makers and other vital research-users. REACH did receive funding support in the first year of operation from several donors including the Swiss Tropical Institute, International Development Research Centre (IDRC), WHO-Alliance Health Policy and Systems Research[18]. The Council on Health Research for Development (COHRED) supports research and innovation for health, equity and development in low- and middle-income countries. A unique innovation in Uganda is the ‘country-based’ science communication initiative started jointly with the Institute of Public Health at Makerere University in Uganda that is intended to enhance the appropriate packaging of popular health briefs . Professional bodies that have enhanced the dissemination of knowledge to support policy and decision making include the Uganda Paediatric Association[19] and the Association of Obstetricians and Gynaecologists in Uganda[20].


Leverage information and communication technologies

Level of access to IT infrastructure

Uganda’s digital backbone and the existence of potential hubs for broadband wireless system has revolutionised the access to IT infrastructure. Whereas previously access to IT infrastructure was limited to the possession of fixed computers, this has now advanced to hand held options including simple mobile telephones. Additionally, telecommunications operators offer free wireless services for individual mobile owners to surf the internet.

Availability of IT solutions

A national plan has existed since 2005, to expand connectivity within the sector. Rural connectivity has increased through access to facilities such as pay phones, telephone centres and Internet access points. The presence of wireless hubs complements this access.


Global Observatory for eHealth
“eHealth for women’s and children’s health” 2013 survey
World Health Organization, Country profiles
National eHealth policy or strategy

The policy document is in draft form, due for adoption by cabinet though partly implemented in terms of Establishment of eHealth Working Group, National eHealth Technology Framework and Guidelines for Establishing new eHealth Projects. No specific reference is made to women’s and children’s health because this policy was geared to address all. Funding for eHealth is available from Government and its development partners.

eHealth systems

The recording of births and deaths is done partially using electronic systems since 2011 by DHIS 2 and mTRAC thus the District Health Officers, HMIS Person and District Surveillance Focal Persons are responsible. Total health expenditure is done both electronically and by manually by Ministry of Finance and Economic Development using IFMS. There are various stake holders tracking resources for reproductive, maternal, newborn and child health individually thus not well coordinated.

Women’s and children’s health policy or strategy

Yes, this policy and strategy are available and they do refer to eHealth. No electronic copy was attached.

Monitoring the status of women’s and children’s health

The 11 indicators of women’s and children’s health are all monitored every 5 years using both electronic and non-electronic means.

National overview of eHealth initiatives for women’s and children’s health

There are eHealth initiatives supported by Public, Donor and Public-private partnership funding in various fields below:

Health services delivery
  • eQuality Health Bwindi/eHMIS
  • Imaging the World (ITW) Bwindi
  • Child count – Millenium village project
  • Sure Project – Supply chain and medicines management
  • Star - E. Supporting and strengthening comprehensive TB/HIV services at district health facility level
Health monitoring and surveillance
  • Mobile Vital Registration Services (VRS) by UNICEF to capture deaths and births
  • Rapid SMS: Disease and Surveillance
  • DHIS 2 Tracker
Access to information for health professionals
  • Nil
Other eHealth programs
  • Nil
Possible barriers to implementing eHealth services

The main barriers are Leadership, Legal, Infrastructure and Standards and these are being addressed by the National eHealth Policy and the multisectoral eHealth Technical working Group.

Knowledge base - eHealth for women’s and children’s health

Yes

ICT training for health sciences students

Yes

Continuing education in ICT for health professionals

Yes

Internet health information quality

Voluntary compliance, government interventions and educational programs are in place but no website is dedicated to women’s and children’s health.

Online safety for children

Yes there are initiatives for online safety and security but details were not given.

Privacy of personal and health-related data

There is legislation to ensure privacy of personal information as per the Act 2011 of Parliament The Computer Misuse Act 2011, The Electronic Signature Act 2011 and The Electronic Transaction Act 2011.

Social media and women’s and children’s health

No officially known social media has programs on women’s and children’s health.

Extent of integration of the HIS

The standardisation of health information data collection formats and the deliberate strategy to promote buy-in from all users will go a long way in integrating the HIS at all levels of the health system . Although the current system is largely paper based, computerisation of data through use of DHIS 2, will improve completeness and timeliness of data submitted. Currently, all HMIS sub-systems generated at facility level are incorporated in the MoH website. There is provision to include community based data such as births and deaths but this is likely to be less up to date as compared to the facility based one. Plans are underway to put in place a central data warehouse for data integration and management housed within the MoH.


Endnotes: References, sources, methods, abbreviations, etc.

  1. Everybody’s business. Strengthening health systems to improve health outcomes. WHO’s framework for action (pdf 843.33kb). Geneva, World Health Organization, 2007
  2. Framework and standards for country health information systems, 2nd ed. (pdf 1.87Mb). Geneva, World Health Organization, 2008
  3. Health Sector Strategic Plan II 2005/06–2009/2010. Volume 1 (pdf 709.68kb). Kampala, Government of Uganda, Ministry of Health, 2006
  4. Monitoring & Evaluation Plan for Health Sector Strategic & Investment Plan 2010/11–2014/15 (pdf 2.92Mb). Kampala, Government of Uganda, Ministry of Health, 2011
  5. http://www.wougnet.org/ICTpolicy/ug/ugictpolicy.html
  6. Action Group for Health, Human Rights and HIV/AIDS; Basic Needs Basic Rights; Effort Integrated Development Foundation ; Epilepsy Support Association Uganda ; Health Rights Action Group; Joyce Fertility Support Centre; Mental Health Uganda; National Community of Women Living with HIV/AIDS; National Care Centre; Women’s Awareness Against Cervical Cancer; Sickle Cell Association of Uganda; Traditional and Modern Health Practitioners Together Against AIDS and other Diseases; Reproductive Health Uganda; Uganda National Health Users/Consumers Organization
  7. http://unhco.or.ug/vhr
  8. http://www.ictregulationtoolkit.org/en/PracticeNote.3144.html
  9. The Broadcasting Council (2004), Local content in the Uganda Media
  10. At the current exchange rate of 1 USD=2300 UGX
  11. Ministry of Health Sector Strategic and Investment Plan, July 2010
  12. Kabagambe et al (2008) Assessment of the functionality of the HMIS in Uganda
  13. Ministry of Health Uganda, 2010 op cit, pg 1
  14. Assessment of health facility data quality in Uganda 2010-2011, WHO & Ministry of Health Uganda
  15. Health sector strategic and Investment plan 2010/11-2014/15
  16. Country Report (2008) on the Alignment and Harmonization in Health Research (AHA) Study
  17. Bennet et al, 2011 Influencing policy change: the experience of health think tanks in low- and middle-income countries: Health Policy and Planning Advance Access
  18. East African Community – Health http://www.eac.int/health/index.php?option=com_content&view=article&id=96&Itemid=125
  19. http://www.upa.or.ug/about.html
  20. http://www.figo.org/members/association-obstetricians-and-gynaecologists-uganda