Role of the EHR in Realization of Human Rights

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1 Hospital Health Information System EU HIS Contract No. IPA/2012/ Final version July 2015 Visibility: Public Target Audience: EU-IHIS Stakeholders This document has been produced with the financial assistance of the European Union. The views expressed herein can in no way be taken to reflect the official opinion of the European Union. This project is funded by Republic of Serbia Implemented by the the European Union Ministry of Health WHO and UNOPS

2 EHR epsos IHIS OHCHR UN Abbreviation List Electronic Health Record European Patient Smart Open Services Integrated Health Information System Office of the High Commissioner for Human Rights United Nations EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

3 Table of Contents Briefly on Human Rights... 3 What are Rights?... 3 What are Human Rights?... 3 The International Bill of Human Rights... 3 Core Human Rights Treaties... 3 Human Rights Indicators Main Features of OHCHR Conceptual and Methodological Framework. 4 UN Principal Subjects of Concern and Recommendations on the Second Periodic Report of Serbia, 10 July EHR and IHIS Contribution Regarding the UN Principal Subjects of Concern and Recommendations on the Second Periodic Report of Serbia... 8 Principal Subject of Concern and Recommendations: Collection and Processing of Data... 8 Direct EHR Contribution... 9 Indirect EHR and IHIS Contribution... 9 References: Table of Tables Table 1 Direct EHR Contribution to the Solution of the Principal Subject of Concern and Recommendations on Collection and Processing Data... 9 Table 2 Indirect EHR Contribution to the Solution of the Principal Subjects of Concern and Recommendations EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

4 Briefly on Human Rights What are Rights? Rights are entitlements (not) to perform certain actions, or (not) to be in certain states; or entitlements that others (not) perform certain actions or (not) be in certain states. Rights dominate modern understandings of what actions are permissible and which institutions are just. Rights structure the form of governments, the content of laws, and the shape of morality as it is currently perceived. To accept a set of rights is to approve a distribution of freedom and authority, and so to endorse a certain view of what may, must, and must not be done. 1 What are Human Rights? Human rights are rights inherent to all human beings, whatever our nationality, place of residence, sex, national or ethnic origin, colour, religion, language, or any other status. We are all equally entitled to our human rights without discrimination. These rights are all interrelated, interdependent and indivisible. Universal human rights are often expressed and guaranteed by law, in the forms of treaties, customary international law, general principles and other sources of international law. International human rights law lays down obligations of Governments to act in certain ways or to refrain from certain acts, in order to promote and protect human rights and fundamental freedoms of individuals or groups. 2 The International Bill of Human Rights Universal Declaration of Human Rights (UDHR), 1948 Covenant on Civil and Political Rights (ICCPR), ratification parties Covenant on Economic, Social and Cultural Rights (ICESCR), ratification parties Core Human Rights Treaties The International Convention on the Elimination of All Forms of Racial Discrimination (ICERD), ratification parties The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), ratification parties The Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (CAT), ratification parties The Convention on the Rights of the Child (CRC), ratification parties EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

5 The International Convention for the Protection of the Rights of All Migrant Workers and Members of Their Families (ICMWR), ratification parties The Convention on Enforced Disappearances (CED), ratification parties The Convention on the Rights of Persons with Disabilities (CRPD), ratification parties All the core human rights treaties reflect the general principle of the Universal Declaration of Human Rights that the rights they set out should be enjoyed without distinction of any kind. Article 2 of the Declaration sets out a non-exhaustive list of prohibited grounds for discrimination: Race or colour; Sex; Language; Religion; Political or other opinion; National or social origin; Property, birth or other status. 3 Human Rights Indicators Main Features of OHCHR Conceptual and Methodological Framework Office of the High Commissioner for Human Rights (OHCHR) has developed a conceptual and methodological framework of indicators that can be applied and contextualised at national level. The OHCHR conceptual and methodological framework adopts a common approach to identifying indicators for monitoring civil and political rights, and economic, social and cultural rights. The framework recommends the development of structural, process and outcome indicators. This configuration of indicators should help assess the steps being taken by States in addressing their obligations from commitments and acceptance of international human rights standards (structural indicators) to efforts being made to meet the obligations that flow from the standards (process indicators) and on to the results of those efforts (outcome indicators). The framework seeks neither to prepare a common list of indicators to be applied across all countries irrespective of their social, political and economic development. Nor to make a case for building a global composite measure for cross-country comparisons of the realization or enjoyment of human rights. The framework provides guidance for the identification of contextually relevant and feasible indicators in compliance with international human rights norms and principles. Using the adopted framework, lists of illustrative indicators have been identified and are being validated on a number of human rights and thematic issues. The adopted methodology focuses primarily on indicators that are or can be compiled by official statistical systems using administrative records and statistical surveys. 3 The International Human Rights System: UN Human Rights Mechanisms and Oversight United Nations Human Rights, Office of the High Commissioner for Human Rights EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

6 The framework focuses on quantitative as well as qualitative indicators. Efforts have been made to keep the indicators simple, based on objective and transparent methodology and, to the extent feasible, with an emphasis on disaggregation by type of prohibited discrimination and by vulnerable and marginalized population group. Human rights indicators allow States to assess their own progress in implementing human rights and compliance with the international treaties, and also provide tools for civil society to monitor progress and ensure accountability. They can assist national governments in implementing rights-based policy, bolster cases argued by human rights advocates and provide further access to information EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

7 UN Principal Subjects of Concern and Recommendations on the Second Periodic Report of Serbia, 10 July 2014 The Committee on Economic, Social and Cultural Rights considered the second periodic report of Serbia on the implementation of the International Covenant on Economic, Social and Cultural Rights (E/C. 12/SRB/2) at its 27th and 28th meetings (see E/C. 12/2014/SR.27 and 28), held on 15 May 2014, and adopted, at its 40th meeting, held on 23 May 2014, the (following) concluding observations. 5 According to report, principal subjects of concern and recommendations are: Direct applicability of the Covenant Collection and processing of data Protector of citizens Judiciary Maximum available resources Discrimination Roma Personal documentation Asylum seekers, refugees and internaly displaced persons National machinery for gender equality Gender discrimination Unemployment Equal pay for work of equal value Labour inspectorate Minimum wage Trade union rights Unemployment benefits Pension for refugees and internaly displaced persons Social security Trafficking in persons Domestic violence Children without parental care Child labour Poverty Forced evictions Social housing and conditions in informal settlements 5 Concluding observations on the second periodic report of Serbia United Nations Economic and Social Council, Committee on Economic, Social and Cultural Rights, 10 July 2014 EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

8 Safe drinking water Right to health Right to education Cultural rights EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

9 EHR and IHIS Contribution Regarding the UN Principal Subjects of Concern and Recommendations on the Second Periodic Report of Serbia Principal Subject of Concern and Recommendations: Collection and Processing of Data The Committee is concerned about the lack of systematic collection and processing of disaggregated data which would allow for an accurate assessment of the fulfilment of economic, social and cultural rights in the State party. The Committee recommends that the State party: a) Set up a system to collect statistical data on the major factors affecting the implementation of the economic, social and cultural rights set forth in the Covenant, duly disaggregated by year, sex, age, urban/rural population, ethnic origin, disadvantaged and marginalized groups and other relevant criteria, and include such statistical data in its next periodic report; b) Undertake regular and systematic assessment, against a clear set of indicators, of the level of enjoyment of all economic, social and cultural rights by various segments of the population, taking into account the conceptual and methodological framework for human rights indicators that was developed by the Office of United Nations High Commissioner for Human Rights; c) Apply human rights indicators, in particular for economic, social and cultural rights, as part of its national development and integration strategies. 6 The EHR data can significantly help in systematic collection and processing of disaggregated data and allow an accurate assessment of the fulfilment of economic, social and cultural rights in the Republic of Serbia. The EHR contribution can be direct and indirect. Electronic Health Record (EHR), an evolving concept defined as a longitudinal collection of electronic health information about individual patients (EpSOS glossary), represents a set of integrated, primarily health related data on individual, specific patients, derived from multiple sources. 7 The EHR ensues and perpetuate the concept of integrated care and represents one of key pillars of an Integrated Health Information System (IHIS), a worldwide trend in health care reforms and new organizational arrangements focusing on more coordinated and integrated forms of care provision 8. In that sense, EHR has an important role in patients data collection, storage and processing of data. The core dataset of the EHR in the Republic of Serbia includes data on patients such as administrative data, socio-medical data and general health data. EHR Core Dataset is a product of the EU-IHIS Project and must be reviewed and approved at the national level, systematically and continuously. 6 Concluding observations on the second periodic report of Serbia (adopted by the Committee at its fiftysecond session 28 April 23 May 2014) United Nations Economic and Social Council, Committee on Economic, Social and Cultural Rights, 10 July EU-IHIS Glossary 8 International Journal of Integrated Care, EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

10 EHR Dataset can be upgraded, expanded, amended and complemented in accordance with further needs and development. 9 The EHR coverage is key prerequisite for obtaining relevant information on population(s). Greater number of patients, healthcare institutions and larger territory covered by the EHR can give more accurate assessment through set of the EHR reports and indicators. Accurate assessments can be used for comparative analyses within the country, region or at international level. Direct EHR Contribution The following table presents direct contribution to the fulfilment of the Committee recommendation to collect statistical data and their disaggregation (a). Direct contribution means that disaggregation by specified criteria can be obtained as a report directly from the EHR database. EHR Core Dataset 10 Disaggregation by: Data name Data subgroup Data group year Data insertion date and Medical data time attributes sex Sex Personal data Administrative data age Date and time of birth Personal data Administrative data urban/rural population Place of residence Contact Administrative data information Table 1 Direct EHR Contribution to the Solution of the Principal Subject of Concern and Recommendations on Collection and Processing Data Indirect EHR and IHIS Contribution EHR also includes other data that can be used for obtaining regular and systematic assessments, against a clear set of indicators (b), related to other Committee s principal subjects of concern. Indirect contribution means that assessments can be obtained as a matrix of several data values derived from the EHR database and data values from other referent databases. Following table represents it: Principal subject of concern Unemployment Referent database/ institution National Employment Service; Ministry of Labour, Employment, Veteran and Social Affairs Indicator unemployment rate of persons with disabilities EHR data name(s) and mark in the Patient Dataset 11 Employment (2.2.2) Previous diagnoses (3.1.2) Medical implants (3.2.2) Medical devices (3.2.3) Final diagnosis ( ) Additional diagnoses ( ) 9 EU-IHIS Electronic Health Record (EHR) in the Republic of Serbia: Framework Document on the Core Data Set and the Core Set of Standardized Reports and Indicators 10 EU-IHIS Patient Dataset 11 EU-IHIS Patient Dataset EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

11 Domestic violence Right to health Republic Institute for Social Protection; Ministry of Labour, Employment, Veteran and Social Affairs; General Police Directorate; Ministry of Interior Republic Institute for Social Protection; Ministry of Labour, Employment, Veteran and Social Affairs; General Police Directorate; Ministry of Interior National Health Insurance Fund; Ministry of Health Institute of Public Health of Serbia; Ministry of Health domestic violence on women abuse and neglect of children rate of individuals who do not have a health card increase of HIV/AIDS Sex (1.1.4) Previous diagnoses (3.1.2) Final diagnosis ( ) Circumstances (4.2) Date and time of birth (1.1.7) Previous diagnoses (3.1.2) Final diagnosis ( ) Circumstances (4.2) Health insurance (1.7.1) Type of health insurance (1.7.2) Personal ID number JMBG (1.2.1) Other ID number of person (1.2.2) Previous diagnoses (3.1.2) Final diagnosis ( ) Circumstances (4.2) Table 2 Indirect EHR Contribution to the Solution of the Principal Subjects of Concern and Recommendations Further, indirect IHIS contribution regarding the UN principal subjects of concern and recommendations on the second periodic report of Serbia are reflected in the following: Discrimination By improved and better IT management, the IHIS assists in overcoming subjective, objective, social and economic barriers to access health care and avoiding discrimination. Any person, regardless of the location, social status or health condition can acquire adequate health care based upon the healthcare professionals who are familiar and well-informed on patient s medical data. Personal documentation and Asylum seekers, refugees and internally displaced persons Medical record for those without personal identification and documentation can be the trigger for double check and regulation. National machinery for gender equality and Gender discrimination Electronic data in health sector significantly support gender analysis. By definition, electronic health data are genderised and support policy development and decision making based on gender analysis. Unemployment benefits Decreased working capacity due to health problems can be observed through the IHIS. EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

12 Social security Healthcare is one of a key pillars of social safety net in the society. Better IT management leads to better health care and consequently improved social security. Poverty Access to mobile available data can decrease other expenses. Good health records eliminate the need for repeated unnecessary medical procedures, thus decreasing unnecessary healthcare costs and improving healthcare system efficiency. Right to education The IHIS, including the EHR, can also be considered as a resource for the health education of population. This is in close connection with the patients rights to be informed abouth their health and of the informed consent to healthcare. EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

13 References: The International Human Rights System: UN Human Rights Mechanisms and Oversight United Nations Human Rights, Office of the High Commissioner for Human Rights Concluding observations on the second periodic report of Serbia (adopted by the Committee at its fifty-second session 28 April 23 May 2014) United Nations Economic and Social Council, Committee on Economic, Social and Cultural Rights, 10 July 2014 International Journal of Integrated Care, EU-IHIS Šumatovačka 78-80, Beograd, Serbia /13

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