Health Informatics Initiatives Research Articles

The status of health information systems and digital transformation in the European Region

Abstract Although there have been investments in health information systems (HIS) and digitalization, WHO/Europe’s work with Member States (MS) shows that much can be improved still. Typically, there is a strong focus on data collection, but less on analysis and knowledge translation, resulting in available data not being optimally used to support decision making. Standards for data exchange and interoperability have not yet been fully implemented. Efforts are underway to train healthcare professionals, yet only half of MS have developed policies for digital health literacy. Fewer still have implemented a comprehensive digital inclusion plan, leaving disadvantaged populations at risk of falling behind. In line with the traditionally strong focus on HIS strengthening in WHO’s work, the European Programme of Work 2020-2025 (EPW) emphasises the need for MS to improve and modernise their HIS to ensure that decisions are data driven. One of the EPW flagship initiatives is Empowerment through Digital Health, promoting the leveraging and scaling up of digital transformation for better health. The Regional digital health action plan for the WHO European Region 2023-2030 outlines the strategic actions needed to achieve this, while fully respecting the values of equity, solidarity and human rights. Collaboration with MS and international partners is vital in this work. WHO/Europe has established several MS-driven health information networks in the past, most notably the European Health Information Initiative (the EHII). The EHII in 2023 has made a restart in the form of the European Health Information Network (HIN). The HIN will guide the work under the EU-funded action ‘Supporting Member States in the WHO European Region in strengthening health information systems and boosting health data governance’, which will be implemented by WHO/Europe. This strong European Commission and WHO/Europe partnership will be a main catalyst for HIS improvement in the Region the coming years.

WHO Support tool to strengthen health information systems

Abstract In the first presentation, a representative of the WHO Europe team who took part to the development of the “Support tool to strengthen health information systems: guidance for health information system assessment and strategy development” as part of the European Health Information Initiative (EHII), will introduce the tool and the relevance of performing health information system assessments to support Member States in strengthening their HIS. The 4 main guiding steps of the HIS tool (1. Perform an HIS assessment; 2. Develop an HIS vision; 3. Develop an HIS improvement plan; 4. Monitor progress and perform regular evaluations) will be outlined as well as the HIS assessment item sheet that guides the performing of an assessment, which consists of a core module and several add-on modules. The aim of the core module is to provide an overview of the functioning of the entire national HIS. The aim of the add-on modules is to shed more light on specific parts or functions of the national HIS. As the tool is in continuous development, the plans for the future will be outlined, including a short introduction to the new add-on modules that will be included in the tool.

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501. Implementation and Outcomes of a Program to Coordinate and Administer Monoclonal Antibody Therapy to Long-Term Care Facility Residents with COVID-19

BackgroundLong-term care facility (LTCF) residents are at increased risk of severe COVID-19, with CMS data indicating > 20% mortality. BLAZE-1 trial noted lower hospitalization rates in high-risk patients receiving monoclonal antibody (mAb) vs placebo (4.2% vs 14.6%) for mild to moderate infections, making it a treatment option for LTCF residents; however, many LTCF lack staff to prepare and administer mAb therapy. To address this need, Region VII Disaster Health Response Ecosystem (R7DHRE) coordinated via NE Medical Emergency Operations Center (NEMEOC) an ASPR pilot project to facilitate infusion of COVID-19 mAb therapeutics for LTCF residents in the state.MethodsR7DHRE partnered with Great Plains Health, Nebraska DHHS, Nebraska Antimicrobial Stewardship Assessment and Promotion Program (ASAP) and Infection Control Assessment and Promotion Program (ICAP) to surveil cases in the state, establish distribution/administration pathways, and educate providers on mAb therapeutics. A multi-hub-and-spoke model was created to allow LTCF to work with regional hospitals or pharmacy services to administer drug in their facilities, reducing time to therapy and transmission risk associated with patient transport. A centralized request process was created using a REDCap platform and verification of patient eligibility by ASAP. This request link, informational documents, fact sheets, and custom-built order form templates were hosted on a dedicated ASAP webpage, and details were shared during weekly ICAP LTCF webinars. Outcomes data, including 14- and 28-day COVID-related hospitalizations and mortality, were collected using databases from Nebraska Health Information Initiative and Nebraska DHHS.ResultsThrough this program, 513 doses were administered to LTCF residents. Average time from symptom onset to infusion was 2.6 days. COVID- related hospitalization and mortality rates were lower than previously reported for LTCF residents (Table 1). Table 1. Debographics and Outcomes of mAb Infusions ConclusionBy utilizing existing relationships with LTCFs in the region, we established a program to promptly distribute, prepare, and administer monoclonal antibody therapy to LTCF residents in need, preventing COVID-related hospitalizations and deaths.Disclosures James Lawler, MD, MPH, FIDSA, Kinsa Health (Advisor or Review Panel member)Takeda Pharmaceuticals (Advisor or Review Panel member) M. Salman Ashraf, MBBS, Merck & Co. Inc (Grant/Research Support, I have recieved grant funding for an investigator initiated research project from Merck & Con. Inc. However, I do not see any direct conflict of interest related to the submitted abstract)

Health Information Portal - One-stop-shop for health information

Abstract Background A vast amount of health information in the form of data sources, experts, research networks, and tools related to collection, use and knowledge transfer of health information exists in EU Member States (MSs) but this information is scattered around and often difficult to find. Researchers and policy makers don't have a centralized place where information could be easily obtained. This hampers effective use of existing information and materials for research and evidence informed policy making. Methods There is a need for a centralized place where different components of health information can be easily found. Information should be described in structured, standardized format to allow comparisons and searchability. Results InfAct and PHIRI have established the Health Information Portal (HIP, healthinformationportal.eu), a one-stop-shop for health information. This portal brings together health information from different EU MSs and research networks and projects as well as from international organizations. HIP has catalogues on health information data sources, research networks, national nodes, health information initiatives and projects, health information related publications and guidelines including legal and ethical guidelines, and available capacity building activities. These catalogues are searchable and support open and fair access to the health information. Conclusions The Health Information Portal will facilitate secondary use of existing health information data for research and evidence informed policy making. Through HIP, researchers can find experts from different domains of health information as well as existing tools for data collection, analysis and knowledge transfer. It also facilitates health information capacity building within the EU. Aim is to support a more effective, also more cost-effective, health research environment which can enhance population health and healthcare in the EU, and through that productivity and European economy.

Policy recommendations for improving health literacy: based on European Health Literacy Survey 2019

Abstract The European network on Measuring Population and Organizational Health Literacy (M-POHL) was founded in 2018 under the umbrella of the European Health Information Initiative (EHII) of the World Health Organization - Regional Office for Europe. Health literacy (HL) is increasingly recognized as a critical determinant, mediator or moderator of health, and large parts of populations have been shown to have limited HL. Therefore, it is one of the aims of M-POHL to install international comparative population HL surveys at regular intervals. These can provide a valuable and valid basis for developing evidence-informed recommendations for policy, research and practice in the field of HL. To meet this purpose, M-POHL brings together experts from research and policy. Following up on the first European HL survey (HLS-EU), the first project of M-POHL was the international HLS19 survey, with 17 participating countries from the WHO European region. In addition to general population HL, the survey also covered specific HL's such as digital, communication, navigation, and vaccination HL. Despite the obstacles posed by the Corona pandemic, the survey could be administered, and an international comparative report was prepared by the HLS19 project consortium. On this basis, M-POHL will hold two workshops in June and August 2021 to develop resulting recommendations for policy and research in Europe. It is expected that these recommendations will a. o. focus on: population groups in most need of support in their HL; how to improve different dimensions of HL (such as finding, understanding, assessing, and applying relevant health information); HL as applied to health care, disease prevention, and health promotion; and aspects relating to the specific HL's measured. The presentation will describe the process of development, and give an overview of the M-POHL recommendations.

Health Information Systems in the COVID-19 Pandemic: A Short Survey of Experiences and Lessons Learned From the European Region.

Introduction: The COVID-19 crisis provides an opportunity to reflect on what worked during the pandemic, what could have been done differently, and what innovations should become part of an enhanced health information system in the future.Methods: An online qualitative survey was designed and administered online in November 2020 to all the 37 Member States that are part of the WHO European Health Information Initiative and the WHO Central Asian Republics Information Network.Results: Nineteen countries responded to the survey (Austria, Belgium, Croatia, Czech Republic, Finland, Greece, Iceland, Ireland, Israel, Italy, Kazakhstan, Latvia, Lithuania, Romania, Russian Federation, Sweden, Turkey, United Kingdom, and Uzbekistan). The COVID-19 pandemic required health information systems (HIS) to rapidly adapt to identify, collect, store, manage, and transmit accurate and timely COVID-19 related data. HIS stakeholders have been put to the test, and valuable experience has been gained. Despite critical gaps such as under-resourced public health services, obsolete health information technologies, and lack of interoperability, most countries believed that their information systems had worked reasonably well in addressing the needs arising during the COVID-19 pandemic.Conclusion: Strong enabling environments and advanced and digitized health information systems are vital to controlling epidemics. Sustainable finance and government support are required for the continued implementation and enhancement of HIS. It is important to promote digital solutions beyond the COVID-19 pandemic. Now is the time to discuss potential solutions to obtain timely, accurate, and reliable health information and steer policy-making while protecting privacy rights and meeting the highest ethical standards.

Novel Approach to Support Rapid Data Collection, Management, and Visualization During the COVID-19 Outbreak Response in the World Health Organization African Region: Development of a Data Summarization and Visualization Tool.

BackgroundThe COVID-19 pandemic has created unprecedented challenges to the systematic and timely sharing of COVID-19 field data collection and management. The World Health Organization (WHO) is working with health partners on the rollout and implementation of a robust electronic field data collection platform. The delay in the deployment and rollout of this electronic platform in the WHO African Region, as a consequence of the application of large-scale public health and social measures including movement restrictions and geographical area quarantine, left a gap between data collection and management. This lead to the need to develop interim data management solutions to accurately monitor the evolution of the pandemic and support the deployment of appropriate public health interventions.ObjectiveThe aim of this study is to review the design, development, and implementation of the COVID-19 Data Summarization and Visualization (DSV) tool as a rapidly deployable solution to fill this critical data collection gap as an interim solution.MethodsThis paper reviews the processes undertaken to research and develop a tool to bridge the data collection gap between the onset of a COVID-19 outbreak and the start of data collection using a prioritized electronic platform such as Go.Data in the WHO African Region.ResultsIn anticipation of the implementation of a prioritized tool for field data collection, the DSV tool was deployed in 18 member states for COVID-19 outbreak data management. We highlight preliminary findings and lessons learned from the DSV tool deployment in the WHO African Region.ConclusionsWe developed a rapidly deployable tool for COVID-19 data collection and visualization in the WHO African Region. The lessons drawn on this experience offer an opportunity to learn and apply these to improve future similar public health informatics initiatives in an outbreak or similar humanitarian setting, particularly in low- and middle-income countries.

4.C. Round table: Joining forces: frameworks for international and multi-sectoral collaborations in health information

Abstract Countries have a wide range of lifestyles, environmental exposures and different health(care) systems providing a large natural experiment to be investigated. Through pan-European comparative studies, underlying determinants of population health can be explored and provide rich new insights into the dynamics of population health and care such as the safety, quality, effectiveness and costs of interventions. Additionally, in the big data era, secondary use of data has become one of the major cornerstones of digital transformation for health systems improvement. Several countries are reviewing governance models and regulatory framework for data reuse. Precision medicine and public health intelligence share the same population-based approach, as such, aligning secondary use of data initiatives will increase cost-efficiency of the data conversion value chain by ensuring that different stakeholders needs are accounted for since the beginning. At EU level, the European Commission has been raising awareness of the need to create adequate data ecosystems for innovative use of big data for health, specially ensuring responsible development and deployment of data science and artificial intelligence technologies in the medical and public health sectors. To this end, the Joint Action on Health Information (InfAct) is setting up the Distributed Infrastructure on Population Health (DIPoH). DIPoH provides a framework for international and multi-sectoral collaborations in health information. More specifically, DIPoH facilitates the sharing of research methods, data and results through participation of countries and already existing research networks. DIPoH's efforts include harmonization and interoperability, strengthening of the research capacity in MSs and providing European and worldwide perspectives to national data. In order to be embedded in the health information landscape, DIPoH aims to interact with existing (inter)national initiatives to identify common interfaces, to avoid duplication of the work and establish a sustainable long-term health information research infrastructure. In this workshop, InfAct lays down DIPoH's core elements in coherence with national and European initiatives and actors i.e. To-Reach, eHAction, the French Health Data Hub and ECHO. Pitch presentations on DIPoH and its national nodes will set the scene. In the format of a round table, possible collaborations with existing initiatives at (inter)national level will be debated with the audience. Synergies will be sought, reflections on community needs will be made and expectations on services will be discussed. The workshop will increase the knowledge of delegates around the latest health information infrastructure and initiatives that strive for better public health and health systems in countries. The workshop also serves as a capacity building activity to promote cooperation between initiatives and actors in the field. Key messages DIPoH an infrastructure aiming to interact with existing (inter)national initiatives to identify common interfaces, avoid duplication and enable a long-term health information research infrastructure. National nodes can improve coordination, communication and cooperation between health information stakeholders in a country, potentially reducing overlap and duplication of research and field-work.

Health Information: Applications and challenges in the COVID-19 pandemic

Global health systems are under immense pressure with the exponential growth and spread of COVID-19. Public health and health system responses to the pandemic have relied on health information reporting, visualisation, and projections of incidence, morbidity, and mortality. This commentary aims to explore how health information has been used to inform the public, manage risk, understand capacity, prepare the health system and to plan public health strategy. We also aim to share the health information challenges and our insights to inform future debate and strategic investment. This paper will be relevant to health service and health information managers wanting to understand vulnerabilities and focus for future health information initiatives.

Identifying best approaches for engaging patients and family members in health informatics initiatives: a case study of the Group Priority Sort technique

BackgroundPatient engagement strategies in health service delivery have become more common in recent years. However, many healthcare organizations are challenged in identifying the best methods to engage patients in health information technology (IT) initiatives. Engaging with important stakeholders to identify effective opportunities can inform the development of a resource that addresses this issue and supports organizations in their endeavors. The purpose of this paper is to share our experience and lessons learned from applying a novel consensus-building technique in order to identify key elements for effective patient engagement in health IT initiatives. This will be done through a case study approach.MethodsPatients, family members of patients, health professionals, researchers, students, vendor representatives and individuals who work in health IT roles in health organizations were engaged through a one-day symposium in Toronto, Canada in September, 2018. During the symposium, the Group Priority Sort technique was used to obtain structured feedback from symposium attendees in the context of small group discussions. Descriptive statistics and a content analysis were undertaken to analyze the data collected through the Group Priority Sort as well as participant feedback following the symposium.ResultsA total of 37 participants attended the symposium from a variety of settings and organizations. Using the Group Priority Sort technique, 30 topics were classified by priority to be included in a future resource. Participant feedback pertaining to the symposium and research methods was largely positive. Several areas of improvement, such as clarity of items, were identified from this case study.ConclusionsThe Group Priority Sort technique was an efficient method for obtaining valuable suggestions from a diverse group of stakeholders, including patients and family members. The specific priorities and feedback obtained from the symposium will be incorporated into a resource for healthcare organizations to aid them in engaging patients in health IT initiatives. Additionally, five important considerations were identified when conducting future work with the Group Priority Sort technique and are outlined in this paper.

Middle East and North African Health Informatics Association (MENAHIA)

SummaryOver the years, Health Informatics initiatives in the Middle East and North African region have been thriving with a number of different educational, scientific, professional, and technological developments taking place. Within the past year, Health Informatics initiatives in the region have focused on the educational and capacity building efforts. This regional report provides an overview of the wide spectrum of initiatives and developments that are taking place within the region which are supported by the Middle East and North African Health Informatics Association (MENAHIA).

The action network for measuring population and organizational health literacy (M-POHL) and its Health Literacy Survey 2019 (HLS19)

Abstract The first European comparative survey of population health literacy (HL), HLS-EU, triggered a lot of health policy and health systems responses. In the sense of “What doesn’t get measured doesn’t get done”, data seem important to capture the attention of decision makers and to support evidence-informed policy and practice. This is one of the reasons why the WHO publication “Health Literacy - The Solid Facts” (2013) demands regular internationally comparative surveys of HL. Building up on initiatives by HLS-EU researchers and the German-speaking WHO member states, the Action Network on Measuring Population and Organizational HL (M-POHL) under the umbrella of WHO Europe’s Health Information Initiative (EHII) was founded in 2018 to achieve this aim. M-POHL’s objectives are to support regular measurements of population HL and of organizational HL and to use the results to support evidence-informed policy and practice. A unique feature of M-POHL is that it brings together research and policy: countries typically participate with a research and a policy representative. Experiences so far show that policy representatives in M-POHL find the continuous collaboration with research extremely valuable for maintaining momentum around HL in their respective countries. So far, 24 countries have been involved in M-POHL. M-POHL uses projects to meet its objectives. Its first project will be the next European comparative survey of population HL, abbreviated as “HLS19”. This will build up on HLS-EU by using a standard short form of the survey tool for all participating countries, completing it with optional packages on new topics (digital HL, communication and orientation in health care), and allowing for a few country-specific items. Data collection for HLS19 will start in autumn 2019 and last until March 2020. Based on current expressions of interest, between 10 and 14 countries will participate in the survey. An internationally comparative report will be available in 2021.

A methodology for monitoring population health literacy in Europe – the HLS19 project

Abstract Health literacy (HL) matters for health of people and for use and results of health care. Therefore knowledge on HL is relevant for evidence based health policy. But there is evidence on considerable variation of distributions and associations of HL between European countries. Furthermore HL is impacted by health promotion and health care policy interventions. Therefore it makes sense to monitor HL in each European country on a regular basis in a standardized form that allows for benchmarking between countries. A first European Health Literacy Survey (HLS-EU) in 2011 in eight member states supported by the European Commission introduced measurement of population HL in Europe. Based on the results of this survey WHO-Europés “The Solid Facts - Health Literacy” (2013) recommended institutionalized regular measurement and monitoring of HL. To implement this recommendation in 2017 the Action Network on Measuring Population and Organizational Health Literacy (M-POHL) was initiated under the umbrella of the European Health Information Initiative (EHII) by WHO-Europe, with already 25 countries participating. From its beginning M-POHL combined a policy with a research agenda and developed a documents on it vision and mission: The Vienna Statement on the measurement of population and organizational health literacy in Europe (2018). As a first project the European Health Literacy Survey 2019 (HLS19) has been planned and implemented. Based on the comprehensive concept and definition of population HL and the design and questionnaire of the HLS-EU study a common study design and a further developed instrument has been developed by representatives of 15 participating countries. Most import measurement of digital HL has been included into the HLS19 study and a new short form HLS-Q12 of the HLS-EU47 has been constructed. The presentation will give an overview on the research questions, the design and the instruments, the pretesting and the data collection of HLS19.

Workshop: A methodology for monitoring population health literacy in Europe – the HLS19 project

Abstract Health literacy (HL) is a critical determinant of health (WHO-Shanghai Declaration, 2016), i.e. of healthy life styles, of indicators of health status and of use and results of health care services. For Europe the European Health Literacy Survey (HLS-EU) in 2011 demonstrated, that a considerable proportion of general populations in the researched 8 European countries (and in more countries in later surveys) had limited health literacy and that there was a considerable social gradient of health literacy. The HLS-EU study also showed that HL impacted certain health risks, important indicators of health status and of use of professional health services. But besides these general trends for all researched European countries, there existed considerable variations in distributions and associations of health literacy between the researched countries. Thus, since knowledge on health literacy of populations is relevant for planning health policy, the Solid Facts - Health Literacy of WHO-Europe (2013) recommended regular monitoring of population health literacy by standardized procedures. Since HL now is understood as a relational concept, HL can be measured on a personal or an organizational systems level. Also measures to improve HL can try to improve personal HL by offering better opportunities for learning or by developing Health Literate Organizations or settings to be more sensitive to personal HL of their users and be less demanding and more supportive for users. Therefore in 2017 the Action Network on Measuring Population and Organizational Health Literacy (M-POHL) was initiated under the umbrella of the European Health Information Initiative (EHII) by WHO-Europe. M-POHL from its beginning combines a policy with a research agenda. About 25 member states of WHO-Europe already joined M-POHL. As a first project the European Health Survey 2019 (HLS19) is ongoing with 15 countries participating. The workshop will inform about the vision and mission of M-POHL, about the methodology of the on-going HLS19 survey and about the way selected countries are using monitoring of HL for their health policy. Following 5 short inputs (60′), including two more general ones M-POHL and HLS19 and three on perspectives from countries, participants will have the opportunity (30`) to ask questions and discuss what M-POHL and HLS19 means or could mean for health policy of their country and their personal research or policy interests. Key messages Health literacy is a critical determinant of health which has to be monitored for general populations in all countries of WHO-Europe as a basis for national and European health policy. The Action Network of Measuring Population and Organizational Health Literacy (M-POHL) of WHO-Europe has started the Health Literacy Survey 2019 to provide data for evidenced-based health policy.

Piloting Electronic Case Reporting for Improved Surveillance of Sexually Transmitted Diseases in Utah.

The Utah Department of Health (UDOH) developed an electronic case reporting (eCR) process to automatically transfer clinical data from a provider to the state health department, with aims of improving sexually transmitted disease (STD) surveillance data quality, decreasing the time spent on STD case investigations, and expanding the process to other diseases and larger healthcare systems. Reportable Conditions Trigger Codes (RCTC) were placed into the electronic health record (EHR) system at Planned Parenthood Association of Utah (PPAU) to trigger the automatic transfer of clinical data to Utah's public health surveillance system. Received data were de-duplicated, processed, and assigned directly to the public health surveillance system, with minimal manual intervention. Eighteen new data elements, important for STD case investigations, were transferred to cases with eCR. Additionally, the clinical time spent transmitting data was vastly reduced. With the new eCR process more complete and timely data is received by public health. Providers, as well as public health, now spend less time manually transmitting clinical data by fax and/or phone. Automated processes are challenging but can be achieved with a robust disease surveillance system, flexible rules engine, skillful programming, on-going analysis, and successful partnerships. The eCR process created for this project can potentially be useful for other conditions outside of STDs. Results of this demonstration project offer an opportunity for readers to learn about eCR and apply lessons learned to improve their existing eCR systems, or future public health informatics initiatives, at any state-level jurisdiction.

Development and Implementation of Electronic Disease Early Warning Systems for Optimal Disease Surveillance and Response during Humanitarian Crisis and Ebola Outbreak in Yemen, Somalia, Liberia and Pakistan.

To share lessons learned with experience in concept development of electronic disease early warning system (eDEWS) as a standardized informatic tool for optimal disease surveillance for early warning and response Network (EWARN) during humanitarian crisis. We did literature search, review and analysis to document system attributes of existing electronic tools being used for disease surveillance, early warning and health management information system (HMIS). We generated baseline information and conducted multiple planning sessions with stakeholders for EWARN system requirement elicitation and validation to inform concept development of standardized electronic tool. We identified 98 electronic health projects, classified 22 projects under 'Disease and epidemic outbreak surveillance' theme, whereas only four electronic tools met our selection criteria and were reported to be implemented in humanitarian settings complimentary to EWARN. Baseline information was obtained to guide work on requirement gathering and analysis process, and development of concept for a standardized electronic tool for EWARN. The eDEWS was enhanced with an objective to develop standardize electronic tools and data collection procedures to monitor diseases and health events for alert detection in global humanitarian settings. The enhanced system could be harnessed as a powerful tool by outbreak response teams in getting vital epidemiological information for appropriate and timely response during emergencies. eDEWS experiences in Yemen, Somalia, Liberia and Pakistan offers an opportunity to learn and apply lessons to improve future health informatics initiatives or adapt eDEWS as a feasible standardized approach to enhance EWARN implementation during humanitarian crisis, and potential integration into routine surveillance systems.

The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area

BackgroundPatient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health.AimThe aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12 months.MethodSix individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12 months.ResultsEvaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group’s first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group.ConclusionThe group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data.

Middle East and North African Health Informatics Association (MENAHIA): A New Opportunity for the Region

During the 2018 IMIA General Assembly (GA) held on Oct 2018 in Sri Lanka, a new organization, the Middle East and North African Health Informatics Association (MENAHIA) was established as a regional non-governmental organization to promote Health Informatics in the region. Health Informatics activities in applications, education, and research have been growing in the Middle East and North African region for many years. Over the past year, health informatics initiatives within the region focused on the education sector and the workforce. The need to enhance the education delivery and methods is essential in promoting Health Informatics in the region as well as establishing master programs in many countries within the region.This paper provides an overview of the variety of initiatives that are occurring in the region and are endorsed by MENAHIA.

Integrating data from disparate data systems for improved HIV reporting: Lessons learned

Objective: To assess the integration process of HIV data from disparate sources for reporting HIV prevention metrics in Scott County, IndianaIntroduction: In 2015, the Indiana State Department of Health (ISDH) responded to a large HIV outbreak among persons who inject drugs (PWID) in Scott County1. Information to manage the public health response to this event and its aftermath included data from multiple sources such as surveillance, HIV testing, contact tracing, medical care, and HIV prevention activities. Each dataset was managed separately and had been tailored to the relevant HIV program area’s needs, which is a typical practice for health departments. Currently, integrating these disparate data sources is managed manually, which makes this dataset susceptible to inconsistent and redundant data. During the outbreak investigation, access to data to monitor and report progress was difficult to obtain in a timely and accurate manner for local and state health department staff. ISDH initiated efforts to integrate these disparate HIV data sources to better track HIV prevention metrics statewide, to support decision making and policies, and to facilitate a more rapid response to future HIV-related investigations. The Centers for Disease Control and Prevention (CDC) through its Info-Aid mechanism is providing technical assistance to support assessment of the ISDH data integration process. The project is expected to lead to the development of a dashboard prototype that will aggregate and improve critical data reporting to monitor the status of HIV prevention in Scott County.Methods: We assessed six different HIV-related datasets in addition to the state-level integrated HIV dataset developed to report HIV monitoring and prevention metrics. We conducted site visits to the ISDH and Scott County to assess the integration process. We also conducted key informant interviews and focus group discussions with data managers, analysts, program managers, and epidemiologists using HIV data systems at ISDH, Scott County and CDC. We also conducted a documentation review of summary reports of the HIV outbreak, workflow, a business process analysis, and information gathered during the site visit on operations, processes and attributes of HIV data sources. We, then, summarized the information flow, including the data collection process, reporting, and analysis at federal, state and county levels.Results: We have developed a list of lessons learned that can be translated for use in any state-level jurisdiction engaged in HIV prevention monitoring and reporting:Standardization of data formats: The disparate data sources storing HIV-related information were developed independently on different platforms using different architectures; they were not necessarily designed to link and exchange data. Hence, these systems could not seamlessly interact with each other, posing challenges when rapid data linkage was needed.To better manage unstructured data coming from disparate data sources and improve data integration efforts, we recommend standardization of data formats, unique identifiers for registered individuals, and coding across data systems. Use of standard operating procedures can streamline data flow and facilitate automated creation of integrated datasets. This approach may be helpful for future integration efforts in other healthcare domains.Data integration process: Manually integrating data is time intensive, increases workload, and poses significant risk of human error in data compilation. Hence, it may compromise data quality and the accuracy of HIV prevention metrics used by decision-makers.We propose an automated integration process using an extract, transform and load (ETL) method to extract HIV-related data from disparate data sources, transforming it to fit the prevention metrics reporting needs and loading it into a state-level integrated HIV dataset or database. This approach can drastically decrease dependency on manual methods and help avoid data compilation errors.Dashboard development: Major challenges in the process of integrating HIV-related data included disparate data sources, compromised data quality, and the lack of standard metrics for some of the HIV-related metrics of interest. Despite these challenges to data integration, creation of a dashboard to track HIV prevention metrics is feasible. Integrating data is a critical part of developing an HIV dashboard that can generate real-time metrics without creating additional burden for the health department staff, if manual integration is no longer needed. Stakeholder participation: Due to the immediate need for outbreak response, involvement of stakeholders at all levels was limited. Active stakeholder engagement in this process is essential. The stakeholders’ interest and participation can be improved by helping them understand the value of each other’s data, and providing regular feedback about their data and its best use in public health interventions.Conclusions: This assessment highlighted the importance of standardizing data formats, coding across systems for HIV data, and the use of unique identifiers to store individuals’ information across data systems. Promoting stakeholder understanding of the value and best use of their data is also essential in improving data integration efforts. The results of this assessment offer an opportunity to learn and apply these lessons to improve future public health informatics initiatives, including HIV (but not limited to HIV), at any state-level jurisdiction