| 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.