Portuguese Health Data Platform (PDS)
Serviços Partilhados do Ministério da Saúde / Shared Services of the Ministry of Health

A. Problem Analysis

 1. What was the problem before the implementation of the initiative?
Portuguese Health Data Platform (PDS) emerged as a response to problems regarding the sharing of clinical information between citizens/users, health professionals and entities providing health services, in mainland Portugal and islands (Azores and Madeira). In 2007, it was estimated that only 10% of Health-related information was electronically shared, making it imperative to create electronic mechanisms that allowed the scattered clinical information to become available to each citizen and to Health professionals, regardless of time and location of healthcare delivery. In 2008, the study “Benchmarking ICT use among General Practitioners in Europe”, made by the European Commission, showed that Portugal was one of the countries where the use of information and communication technologies (TIC/ICT) in Public Health services, including the level of development and implementation of e-Health, was still very limited and needed major improvements compared to other Member States. In Portugal, until the year 2012, the citizens did not have integrated ICT services and resources that allowed the registration, consultation, accessing and sharing of their health data. The health units did not share clinical information so providing health care was based on deficits in information that was actually available on servers on other units of the NHS. The model of provision of health care was centered on health professionals, with a focus on passive action assigned to the patient and a fragmented, episodic and discontinuous guidance of the Health care process, contributing to a management perspective and funding based on production indicators and absent from results and citizen’s engagement. The importance and magnitude of this problem were estimated based on the difficulties and limitations noted by the Citizens, Health professionals and Health facilities responsibles, knowingly and understandably so, given the low levels of health literacy and education of citizens, as well as by technological, cultural and behavioral change necessary to the Portuguese National Health System (SNS). At the structural level this problem has assumed particular importance and derived the need to establish Patient registries and clinical data Repositories of National width, such as the Anonymized Clinical Data Repository (RICA) for the promotion of research and detection of epidemiological issues and/or epidemic crisis, as well as to share information tools for cooperation, affordability and access to cross boarder healthcare. The lack of centralized and coordinated information within the several levels of Health care delivery, as well as deficits in the structure and design of the various ICT’s Software (SW) solutions, as evidenced by the year 2012, contributed for the component used by health professionals and not respected by the citizen strategic alignment and operational recoverability of information and monitoring of the health status of citizens. The problems with accessing and sharing of information has meant that Central Government institutions (Directorate General of Health – DGS / Central Administration of the Health System - ACSS) - as entities responsible for settling Health Policies - were limited to small set of data, making and adjustmenting coherent public policies with specific target groups and problematic intervention very dificult. Such, has progressively improved substantially. The need for citizen´s involvement and empowerment is integral to solve this problem, partly caused this solution to centralize all resources in a perspective of a citizen and structured contents and an appealing, intuitive design and availaility, 24 hours a day. At a macro strategic level, this problem and the respective solution (PDS), were determinant in the relevant commitments at the so-called "Memorandum of Understanding" (signed with TROIKA - FMI/BCE/UE/Portugal - Memorandum of Understanding (MoU) with the European Commission, the European Central Bank and the International Monetary Fund - 2011) in the field of health policy and structural reforms in this sector, particularly in response to the measure: "Finish the system of electronic health record and ensure the respective access to all relevant services to provide health care" and an integrated response to 4 focus of basic priority of the PDS solution (Citizen/NHS User, Professional, International Projects, Institutional).

B. Strategic Approach

 2. What was the solution?
The Portuguese Health Data Platform (PDS) was proposed in December 2011 by the Clinical Informatics Comission (CIC). It was considered a priority by the Portuguese Government, which, in 2012, nominated SPMS as the entity responsible for the technical implementation of CIC projects. In the context of improving the quality and access of citizens to Health Services, and information sharing, the PDS strategy results in a quality information platform, relevant, safe, reliable, timely, contextualized, that responds to 4 focus priority, in the context of improving the quality and access of citizens to healthcare and information sharing, user-centered (target group) and based on the National Strategy for Quality in Health as defined by the Ministry of Health. Patient Portal – operating since May 2012, with a free Personal Health Record, where the user can register and consult his health data, and access relevant health information and electronic services (online medical appointment, request of eprescription) (Principal Beneficiary: citizen / user / patient). • Professional Portal – operating since June 2012, provides healthcare professionals access to clinical information of the patient present in other health institutions and central repositories (Main Beneficiary: health professional). • Institutional Portal- operating since 2014, provides statistics regarding the use of the platform and progressively anonymized clinical information/patient registries of orphan diseases for example (Principal Recipient: Health facilities, e.g. hospitals, health centers, central government entities). • International Portal- operating since July 2013, it supports the implementation of international Projects, particularly in sharing the EU guideline adopted Patient Summary throughtthe European pilot epSOS / EXPAND (Main Beneficiary: Ministries of Health in the countries involved in projects of R & D & I - Production knowledge and Experience Sharing) PDS is a high-added value project for the citizen / community, designed for the 10 million Portuguese, and designed in a phased and progressive manner, taking into account the state of the art but also the needs of local, regional and central governance bodies, such as the Central Administration of the Health System (ACSS) and the General Directorate of Health (DGS). This project is developed according to the guidelines of the National Commission for Data Protection (CNPD – authorizations in given in feb 2013) and its implementation and reporting are performed in conjunction with all health care units. It is available to public institutions and public-private partnerships, allowing the exchange of information between about 600 institutions. The application and technology architecture to support information sharing between clinical systems, allows the health professional to access the complete medical history of the patient which is already digital. This capacity is essential in the context of a first appointment or even more so at the emergency room, which are the first contact between the healthcare professional and the patient. In the case of chronic diseases, the health professional can monitor the measurements of biometric monitoring that the patient puts on the User Portal, for example, blood pressure. The PDS also aims to promote self-management of health, in the logic of a contextualized prevention. For example, it will support in 2015 the creation of alerts for appointments and the administration of vaccines. We have also used it to direct the user to situations of high population magnitude (eg. Flu vaccination campaign/Prevention message flu / ebola focused on risk groups) communication. As it can serve as a monitoring the spatiotemporal mobility of citizens, PDS reduces waiting times that characterize health centers, enabling online service appointment scheduling and application for renewal of chronic medications, which are considered an asset and one of the most sought after services by users. In the current context of globalization, Portugal is also increasingly interconnected with emerging developments in Europe and the Portuguese Speaking Countries, particularly within the cross-border healthcare directive, which provides a growing traffic of care provided to our citizens within and outside our borders, foreseeing new and different needs of sharing health information, with the PDS instrument to support these new needs.

 3. How did the initiative solve the problem and improve people’s lives?
The PDS is an initiative with clear outcomes and innovation processes from its conceptual stage to the current stage, because PDS assures interoperability (technical, functional, semantic) between technologies and low-cost systems with higher/modern systems, integrating mechanisms and procedures that ensure safety, reliability and availability of health information for the public and health professionals. It also promotes a coherent strategic and operational alignment of continuous quality improvement in the delivery of health care. The creative and innovative process of PDS arises from a multitude of combined efforts (technical and scientific) and the need for sharing of clinical information between different stakeholders accepted the limitations of budget and technical legacy systems, through four legal-juridical portals contextualized framework and guidelines of the Portuguese Data Protection Authority. The innovative nature of this platform is evident also in the redundancy of the application and log filing of all transactions and the existence of information filters in relation to sensitive areas of clinical information that should not be generally known all health professionals, these filters also allow each Portal to display data according to users needs. Another technical innovation is the fast and easy way how the patient/user/citizen authorize or remove his/her authorization on the sharing of his/her clinical data – such can be done via Patient portal even in a mobile phone so that patient can control data flow as he enters and exits the healthcare unit for example. The quality of shared information is one of the key components, and this flexible and evolving architecture can easily support the develop new areas and application initiatives, such as the initiatives considered good practice internationally, and kick started few months after platform was live.: RENTEV- Registry of Vital Testament, the Card Rare diseases and children -ebulletin. Another innovation in health Information Systems in the area of project communication and dissemination was the creation of a network of PDS ambassadors (focal points) that work in all institutions that are in direct contact with the actors in the health system, and IT architects, as well as streamline education campaigns in schools, malls, waiting rooms of hospitals and ATM networks.

C. Execution and Implementation

 4. In which ways is the initiative creative and innovative?
● In December 2011, the Ministry of Health constituted CIC with the main goal of implementing the Patient Portal and the Professional Portal within twelve months (Order 16519/2011). It also had the mission to enhance the quality and availability of electronic information regarding emergency episodes and the Portuguese emergency services (INEM/Saúde24). When these goals were accomplished, CIC was extinct and a new commission was created to participate on the strategic definition and follow-up of the computerization of clinical records (Order 9725/2013). Other policy documents include: ● The definition of the minimal data set that has to be stored in a record of clinical discharge (Order 2784/2013); ● The need to fill the Surgical Safety checklist in local systems or PDS (Order 2905/2013); ● Consulting the Living Will in PDS (Order 96/2014); ● The technical preparation of working stations to use the Telemedicine tool from PDS (Order 8443/2014). The strategic priority to the development of the Portuguese Health Data Platform (PDS) promoted the SPMS to develop a rapid implementation starting from the 1st quarter of 2012 and in a comprehensive manner, throughout the country. The PDS is a tool designed to being used by the 10 million of Portuguese people, by all health professionals, health institutions and central agencies. PDS was designed in a phased and progressive manner, with reduced costs and without appealing to a central repository of information. It was meant to be interoperable in order to overcome the limitations that arise from multiple systems across institutions and to understand the geographical, technical and human constraints associated with the process change and "healthy" computerization of the SNS This project was authorized by the CNPD on April 30, 2012. The most recent authorization dates from 2013 (940/2013) and the developments are designed in accordance with CNPD guidelines. The initial development of this project resulted in the availability of the Patient Portal (May 2012) and the Professional Portal (June 2012), within a short amount of time, . The Patient Portal is built by aggregating the different services available to the user but that are scattered through different websites, providing information in a relevant and contextualized health. It allows the user to: • Register life habits and vital signs/other health data • Registry of Emergency Contacts • Scheduling appointments at the Primary Care Center • Renewal of chronic prescription Later and progressively, new services were provided which are now fully fuctional, including: • Consultation of the Timeline (timeline medical history); • Consultation of eBulletin - Newsletter Child Health; • Consultation of RCU2 (Patient Unique Clinical Summary) • Management of Rare Disease’s card (currently with more than 450 in first 6 months of this sub-project); • Consultating the INEM (National Institute for Medical Emergency) registries. • Linking to an application to inform citizens on cross-border care and plea for mobility subsidy (the SAGMD - Patient Mobility Management Support System); • Accessing the information RNCCI (National Register of Continuous Care); • Consultation to the Chronic Kidney Disease registry (Management Platform Integrated Disease); • Access to RENTEV information (National Register of Anticipatory Directives/Living Will) • Nationwide telemedicine ptafform making use of the PDS (called PDS LIVE) We are further expanding into new features like: • Risk calculators; • Integration with Telemonitoring devices, • API for linking the Patient Portal to Mobile Devices, • Integration with the new registration system for vaccination, • Dematerialisation of Diabetic eGuide, • Review of the User’s Dictionary • Informed Consent • Dematerialization of the Pregnant book of records • Integration with eprescription system results, with supplementary diagnostic and therapeutic means (MCDT). The Professional Portal functions as a platform for professionals to access data of users belongingto the existing clinical information systems in S NS institutions and systems used by the Ministry of Health. This portal was later expanded to integrate with any existing information system in units of public and private provision of care and different central information repositories, including access to to RCU2 (Patient Unique Clinical Summary). It allows to consult: the electronic health record that is available in Public institutions where the client has been attended (including reports and MCDT images), the history of independent outpatient prescription local prescription, the data associated with treatments in the INEM car within the national oral health program, those contained in the Information System of the National Network for Integrated Continuous Care data, algorithm and device end of the calls made to the Health Line 24, data registered by the user himself at the gate of the user as well as access to all Standards Guidance Clinic of DGS, DGS fill forms, validate surgical’s checklist, Fill and refer cases of Female Genital Mutilation, fill eBulletin of Child and Youth Health, through the "eChild" module, request and consultation of the Rare Disease’s Card, consulting the Living Will, when validated and active in RENTEV. The International Portal, released in July 2013, supports projects particularly in terms of sharing the Patient Summary with epSOS pilot (www.epSOS.eu) and cross-border data sharing, responding to the policy advocated in European cross-border healthcare (www.expandproject.eu). The InstitutionalPortal, made available in the first quarter of 201, provides statistics regarding the daily use of the platform ( namely the number of hits per application, functionality, functional group and type of institution and episode statistics) this allows this information to be analysed by all 52 hospitals and regional authorities so that they become active and involved part of the project expantion and meaningful use. The training component, communication and promotion of the brand PDS was developed in an integrated logic of proximity to citizens and health professionals. As initially the project had no money the logo was designed by a IT member of one of our public hopitals with 5 starts that represent the 5 health regions. We called upon a geographically representative level, the "PDS Ambassadors" (with commands /information and dissemination of knowledge) as well as local/institutional ambassadors. We have around 350 ambassadors and have met them collectively in an auditorium every time a significant landmark in the project is achieved. Workshops were developed in the main units providing health care (visits and sharing of knowledge and experiences in Hospitals / Primary Health Care Centers), as well as information sessions in schools, universities, shopping malls and events of great affluence. The chronology diagram shows the major activities highlights during the period of implementation of PDS.

 5. Who implemented the initiative and what is the size of the population affected by this initiative?
The SPMS and CIC were responsible entities for settling the PDS strategy and implementation in the field. However there are separate entities who contributed to PDS planning and development • Central Administration of the Health System (ACSS) - as entity that finances and monitors activity performed, by providing economic resources according to specific needs; • Directorate General of Health (DGS) - identifying needs for new services and contributes in specific areas of health technical and scientific knowledge; • Portuguese Data Protection Authority (CNPD) – proceeding to validation of the strategy and safety guidelines and data quality; • Professionals bars (Doctors Orders, Nurses Order, Psychologists Order, , Nutritionists Order , Dental Association) – to support the definition of new services to be provided; • Universities - cooperation in the translation of medical terms and the preparation of the user dictionary in conducting usability testing; • City Council/ local government entities/ municipalities – cooperation in disseminating and approach to users less familiar with online services; • Ambassadors Networking – built by professionals from different fields who promote among their peers, the use of this platform; • National Institute for Medical Emergencies (INEM); • National Network for Integrated Continuous Care (RNCCI). Globally, it is worth mentioning that civil society, local government entities - municipalities, regulatory agencies, health organizations of the social and private sector, and research and development units, strengthened the planning process and increased their involvement to achieve development aims of the PDS. At this time, there is a strengthening of initiatives and interests of citizens and society in general, to promote the full implementation and utilization of PDS, namely the Patient Portal.
 6. How was the strategy implemented and what resources were mobilized?
In 2012, this initiative was initially developed by internal resources of public hospitals and SPMS, just going to contain specific funding included in the Annual Contract Program with SPMS/ACSS in 2013, amounting to € 360,000.00. In 2014 the amount of funding included in the contract program was € 1,000,000.00, covering the economic resources available to continue the process of implementing the PDS. Currently, at the level of human resources, there is a project manager and four internal technical human resources, all dedicated to the development of the Project. By the integrative and evolving nature of the PDS, this project has the collaboration of the remaining support areas of SPMS, the procurement department that ensures all necessary acquisitions and the Communication and Public Relations department, which develops all the promotional campaigns and dissemination of the project. However we continue to acquire external means to strengthen internal teams in developing new modules and functionalities services. The existing technological infrastructure in SPMS was enhanced to support the release of this platform. The underlying investments involved an analysis from the perspective of cost-benefit, given the expected results and impacts in a logic of actual application of scientific evidence, reducing waste and improving and modernizing technology infrastructure process and content in the field of IS / ICT.

 7. Who were the stakeholders involved in the design of the initiative and in its implementation?
Until very recently, the PDS was an utopia in Portugal. Today, there is almost a million of registered citizens in the Patient Portal, with the possibility of r and sharing clinical information between 42,000 professionals, integrating 600 sources and databases of information, it is a clear positive transformation promoted by PDS, the streamlineof information in fighting waste, help in the sustainability of the SNS and promoting equal access to information and resources of all Portuguese citizen´s. The Patient Portal stands out to be a PHR (Personnal Health Record) integrated system that allows sharing information that the patient submits in the PDS, with the SNS doctors and nurses. In addition, the Patient Portal allows to perform online services such as appointments at the Primary Health Care Center, the renewal of chronic medication and the consultation of the waiting list for surgery position. The most relevant in the Patient Portal, show: • Most users of Patient Portal are the 25 to 50 years group. If it concerns the registration of medications and attached documents, it widens to 70 years. • The Daily average of 1,700 scheduled appointments and 80 applications for renewal of chronic medication through the Patient Portal. • An average of 2,100 visits / day to the area "My health" of 5,000 daily visits to Patient Portal. • Districts with more hits: Lisbon, Porto, Aveiro, Braga and Setubal. • Access to the Patient Portal using mobile devices and tablets is about 5.2% and 4.5% of all uses. The Professional Portal enables sharing information among about 99% of public and public-private institutions and national applications as Chronic Kidney Disease, EMT, Health 24, making Portugal one of the pioneering countries in this global approach. The data of most relevance in the Professional Portal, show: • Accessed by over 42,000 different health professionals (doctors and nurses). • Includes approximately 600 sources of information. • Average of 22,000 daily hits (mean access to data from another institution). • Data from 2.1 million distinct citizens users has been already accessed through the PDS-Professional Portal. The Institutional Portal aims to provide statistics anonymized clinical information from the Patient Summary, enabling management to adjust to the real health needs of its population. The data of most relevance in the Institutional Portal, show: • Identification and access profile per unit of health and referral opportunities for improvement in registration and information sharing between entities. The International Portal will support for cross-border data-sharing projects, responding to the policy advocated in European cross-border healthcare. The data of most relevance in the International Portal, show: • Participation in European projects such as Expand, and Portugal, including SPMS are the project leader entity and benefit leading this initiative involving countries X, with involvement from government agencies, universities, units of R & D & I, companies and associations / foundational entities. Portugal was considered by OMS a country with Female Genital Mutilation risk, by taking into account their immigrant communities. In this sense, when available, in the form of Professional Portal screening, the doctor can monitor these cases and characterize the country of production of the episode (in 2014 - 34 cases were recorded on 8 health institutions). This made Portugal the first Country in EU with a national registry of Genital Mutilation at a very low cost. The availability of the Person with Rare Disease’s Card in July 2014, customize the treatment in case of emergency. This card follows the rules and forms of Orphanet already was ordered 450 cards. Currently, the work developed with DGS mainly concerns the creation of digital bulletins, such as the Child and Youth Health, the Vaccination and the Diabetic’s. These electronic bulletins have the same exact information presented on their respective homonymous paper versions. Moreover, the eBulletins can be edited by healthcare professionals and visualized by the patients (in some sections it is possible for the patient to write). Among several advantages, the ability to notify the patient of upcoming medical appointments stands out.

 8. What were the most successful outputs and why was the initiative effective?
Right now there are several instruments that monitor the different areas of activity and the PDS project. Highlight activities through continuous monitoring of instruments: • Reports submitted monthly to the health institutions that reflect the evolution of the Professional Portal and specific to each institution accesses. It emphasizes monitoring the percentage of hits in the context of emergency and outpatient. • Qualitatively be held April 10, 2014 a survey has been answered by 7524 professionals for the following areas: Aspect Graph, Release of Information, Ease of Use, Overall Degree of Satisfaction, Fast Access and Relevance of Information. Adds up to an optional introduction field observations. In general, professionals are satisfied with the solution that the PDS presents stressing the need for access to diagnostic exams. Thus, we are working intensively on providing the reports of examinations at the national level. • From the Institutional Portal, The SPMS provides access to institutions to monitor their own use of the PDS. • Monitoring the progress of national programs is done in collaboration with other entities who analyze the data extracted from the PDS. • They are made monthly reports that reflect the use of services by citizens, allowing to know and act upon the spread of these. One of the valued methodologies in the development of the initiative process was the articulation between various entities and sectors, highlighting the close relationship with the universities, and at this point, are developing two doctoral theses on the PDS, have been developed three masters thesis and scientific articles published in journals of national and international reference. Participation and sharing of knowledge and experiences in International Conferences, Workshops, Working Groups supported by the European Commission and International Networking of this specialty area, as does the PDS is in a continuous process of evaluation and prospective analysis given the latest scientific evidence and levels skills in internal and external development.

 9. What were the main obstacles encountered and how were they overcome?
There are three levels of obstacles to overcome: Legal, technical and communicational. At a legal level, the PDS was supported by the publication of a set of orders that regulate and support the developments made. This platform was designed and developed in accordance with the guidelines and recommendations of the opinion of the DPA which not only ensure and guarantee the juridical and legal compliance on the rights of privacy and access to sensitive data, as well as contribute to a shared consensus among entities. The economic and social situation of high complexity but also the advantages that come from adoption of PDS, made this project a priority combined with high budgetary constraints. There has been some initial resistance in the use by mistrust of security issues or lack of benefits from the advantages of their use, by who, there has been several initiatives to informate thecitizens and health professionals about the benefits of portal and their use. The aim is to overcome specific barriers of organizational culture and low health literacy (difficulties associated with illiteracy, low education, digital divide). At the technical level the greatest obstacle consisted in linking different types of systems present in the various health institutions, including some that are designed for more than 30 years. Regarding its use, there is the limitation of the technological resources available at institutions that do not allow an optimization of rapid utilization of PDS. Nowadays, in the context of a first visit, the physician or nurse can visualize the whole patients’ clinical history through PDS, which is a simple click away! Portugal has a clear strategy to evolve PDS and to continually introduce improvements in healthcare. Our next steps to provide higher quality of care are as follows: ● Standardization of clinical data formats, e.g., IHE and HL7 CDA or HL7 FHIR; ● Spreading the use of a telemedicine platform that will allow virtual communication between healthcare professionals. This project, called PDS LIVE, uses cutting edge technology and presents no extra costs to the NHS institutions. PDS LIVE will be further extended to the Patient Portal, enabling the patient to communicate with the healthcare professional from the comfort of his home; ● Anonymize all patient summaries from the Portuguese population which will provide valuable statistics. This statistics are of utmost importance for healthcare management, healthcare investigation and policy definition. ● Evolve the RESTful web services and providing new APIs that will allow the management of personal health data stored by the patient through mobile applications. The specification of the services will be publically available allowing the community to develop and register new apps.

D. Impact and Sustainability

 10. What were the key benefits resulting from this initiative?
Improving Public Service and all the benefits that PDS brings to citizens, society, health professionals. In the Portuguese SNS this is visible and determined through the following outcome indicators: Patient Portal: • Simpler methods of performing certain services like scheduling appointments and request the renewal of chronic medication. For each of these online applications, you avoid a trip to the health center, decrease up queues and costs; • Health literacy development, by providing a set of information services on users rights and obligations regarding the services provided by the National Health Service; • Production and presentation of medical terms in simple and accessible language; • Living Will consulting and authorization, delivering a rare diseases card;; • Access to the health contacts history within the SNS and the clinical information displayed at the Patient Unique Clinical Summary; • Permission management for sharing clinical information, which available topatients, as well as the list of professionals who have accessed that information; • Access to eBulletins, digital version of the bulletins on paper including several advantages such as alerts for surveys or vaccines. Professional´s Portal: • In the context of the first medical appointment, the doctor or nurse has now the possibility to view the medical history present in several institutions; • Improvement in clinical practice to the extent that the context of this practice will be based upon a broad and reliable set of information being the same as the sum of all knowledge recorded on the wearer in each of the organizations separately, • Currently includes nearly 600 databases, including health centers, hospitals, INEM (Portuguese Integrated Emergency Medical Service), Health 24, Chronic Kidney Disease (GID) SISO (Oral Health). • Saving resources, both human resources and in clinical diagnostic means. The time response to access the information shared and valid for an informed clinical decision. Regarding the costs, the impact is evidenced by the decrease in additional means of diagnosis by lack of previous results, also maximizing available resources. • Allows to the generation of structural changes with implications for the entire National Health System with a new dimension and national approach; • Allows access to technical, scientific and information, related to good practice in the management and delivery of health care; • Allows the collection of epidemiological data, that are ina safe, controlled and auditable form, progressively replacing the myriad of systems, paper and online forms. This is of unquestionable public interest. International Portal: • Clinical Information sharing overcoming physical and language barriers; • European eHealth Initiative co-financed by the European Commission and associated partners; • Patients Summary (PS) service existence, as "supplier" and "consumer" user information; • Supported in Patient Centre Information, Business Centre and Registration of Patient Unique Clinical Summary (RCU2); • Use Case Development "Patient Access to Patient Summary". Institutional Portal: • Monitoring through auditing the records of accesses to the platform and local systems; • Availability of access profiles by different institutions; • Access Availability for institutions profiles; • Totally anonymous data through a process impossible to revert; • Statistical information - characterization of Portuguese population - Ex .: How many diabetics are there in Portugal? • RICA Repository of Anonymised Clinical Information - The set of all RCU2 pieces of data/information that can be anonymised in a national data base useful to study diseases (e g.: cancer, diabetes, blood hypertension).

 11. Did the initiative improve integrity and/or accountability in public service? (If applicable)
The PDS is an innovative and sustainable initiative in its dimension, structure, processes and results. The structural components of architecture, information model, ontologies and terminologies, security, privacy and planning, organization and management of change, guarantee the reduced costs and trend effectiveness and efficiency regarding to the application context of other countries and / or areas of intervention. Geographically, the PDS is available in the entire Portuguese territory, including the islands of Madeira and the Azores. The international dimension is under study and development through the European Project EXPAND (www.expandprojects.eu) which is also lead by SPMS EPE, and can highlight the following differentiating elements (quality and sustainability): • The architecture defined for PDS enables progressive expansion of information sharing among all public and private institutions and all records in the various areas of Health Information, providing an integrated view of information to the user. • The project gradually evolves according to the existing financial constraints and considering the priorities set by the the Ministry of Health strategy for information systems; • It is being developed from the initial phase, in conjunction with relevant contributions to a major European Project in this area (epSOS), and nowadays, by EXPAND, another European project following epSOS, that SPMS coordinate sand which involves 19 entities in various countries. • The PDS helps and gives effect to different national and European regulations and legislation, in particular the European Directive on cross-border healthcare. It also underlines the National Health Plan 2012 strategic lines - 2016 and Major Planning Options for Health; • Services available to the patient and professionals, ensure cost reduction and optimization of healthcare resources. A clear example of this is the optimization of resources PDS-LIVE service, without any additional cost for specific communications equipment , allowing the practice of Telemedicine. In this context, it is highlighted that Portugal has received high expressions of interest from other countries, particularly within and outside, to promote the sharing of knowledge and international experiences and contribute to the development and implementation of PDS across borders. On the other hand, it is important to highlight the interest of academia and the scientific and technological system, in studying and monitoring the project's proximity to the PDS, in parallel with a monitoring vision of market trends and constantly updating / monitoring scientific evidence in this domain.

 12. Were special measures put in place to ensure that the initiative benefits women and girls and improves the situation of the poorest and most vulnerable? (If applicable)
A reflexive critical learning approach and analysis is relevant to highlight that the PDS has achieved the goals regarding the registration and sharing of clinical information. It allowed the improvement and delivery of Health care and clinical decision support the sharing of knowledge therapeutic prescriptions, and finally, the rationalization of resources. PDS arose as a quick and effective solution for sharing data between healthcare professionals and patients. In two years only, several challenges have already been overcome and the present solution constitutes a firm foundation to: • Empower patients in self-care management; • Provide patient´s clinical information for all professionals that need it, when they need it, whichever SNS institution they are working at; • Strengthening the SNS sustainability by decreasing the rates of health services usage. Nowadays PDS has the maturity to embrace new breakthrough projects that empower and boost innovation on Portuguese healthcare services. Holistically, the development of PDS, which interconnects different types of care units allowing sharing between them and with the end user, while simultaneously collecting health data for epidemiological and clinical research, helping to improve the information and knowledge of the health system and certain needs: I. To ensure a consistent policy of investment in information systems that enable the optimization of existing sources of data and its transformation into useful information for citizens and health professionals, and knowledge and continuous improvement of efficiency and quality of the system health; II. Strengthen the quality and quantity of monthly public information about the performance of institutions (hospitals, health centers and services), making it at the same time, easier access to the citizen; III. Promotion of transparency in health, while the state assumes the duty to inform citizens about the services we provide health care quality and safety, including public accountability. One the intervention´s area, was considering the possibility of the citizens to register in a single central information system and data context sharing, particularly regarding their emergency contacts, approach per household registration allergies and drug interactions, as well as the request for appointments and the prescription of chronic medication, making the electronic mean a a secure, free and comprehensive one. By this way, the patients health data is stored in the institution’s SW systems where the patient received the health care. The platform allows the flow of information between the private and public sector through web services, as long as there is an uthentication regarding the different end users. The storage in not only one central data base respects the good principles of sustainability and good practices. Regardind proactive disclosure this project is a pioneer by a network of PDS ambassadors (focal points) in SNS institutions, that keep a close contact with the project, as well as information campaigns in schools, malls, waiting rooms of hospitals and the ATM network. One of the lessons learned in this project is the need for a strategic long-term vision supported in an phased and modeling implementation that will allow to obtain partial results in shorter periods of time, ensuring confidence in the the project outcomes and powering a sustained development.

Contact Information

Institution Name:   Serviços Partilhados do Ministério da Saúde / Shared Services of the Ministry of Health
Institution Type:   Government Agency  
Contact Person:   Henrique Martins
Title:   Prof. Dr.  
Telephone/ Fax:   +351211545600
Institution's / Project's Website:  
E-mail:   mrocha@spms.min-saude.pt  
Address:   Avenida João Crisóstomo, nº 9, 3º
Postal Code:   1049 062
City:   Lisboa
State/Province:   Lisboa
Country:  

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