The Project "National Portal for the Transparency of Health Services"
by F.Carinci, AGENAS
Objectives
The main objective of the "National Portal for the Transparency of Health Services” is to reduce the imbalance between users, health professionals and decision makers, in terms of information regarding the availability, characteristics and quality of care of health services across the country.
To this end, AGENAS, in the role of project implementing body, will engage three different types of recipients in a five-year collaboration: a) users; b) healthcare professionals; and 3) decision makers.
The main objective of the Portal is to offer everyone the best data and evidence available on health services, overcoming the fragmentation of health information available from multiple sources. Through facilitated access to synthetic indicators, the Portal will favour informed choices, contributing to the better use of resources and continuous quality improvement through the collective access to the achieved results.
The contents of the Portal will particularly emphasize the role of community care in the context of a targeted reconfiguration of health services across the country, following approval of the "Regulation for the definition of models and standards for the development of territorial assistance within the National Health Service ("DM 77)”, one of the key targets of the National Plan for Recovery and Resilience (PNRR).
The Plan calls for new approaches to inform the public in a timely manner, regarding the availability of new types of services e.g. digital health.
In this framework, the Portal will enable users to search for clear answers to their problems, through contents that will enable a direct collaboration with different types of stakeholders see Box 1.
BOX 1. GENERAL QUESTIONS OF THE TRANSPARENCY PORTAL
Recipients and roles
The platform will be created through the direct involvement of three different types of recipients, whose role in the "transparency cycle " may be represented as follows see Figure 1:
· the "users" , browse the Portal to carry out searches by keywords, populated by current data and information provided by “health professionals” to describe the range of services and facilities available. Professionals generally involve all those contributing to health records on a daily basis (e.g. doctors, nurses and auxiliary personnel recording clinical and administrative data, as well as government and research bodies producing technical reports that can be used to inform the public).
· the "health professionals", contribute to the development of a national framework for the routine evaluation of healthcare performance using quality indicators e.g. those provided by the National Outcomes Programme (PNE). A range of activities will be carried out to verify the quality of health services, through indicators that will be included in specific sections of the Portal, to help the interpretation of users. In this way, different indicators now available through different platforms will be concentrated at a central point of reference, allowing the users to verify the internal consistency of data under a common system that can reconcile information with personal needs. In this way, the Portal will seek to foster mutual“trust”between professionals and users. The availability of shared data and indicators will allow a plurality of subjects to navigate the Portal using graphic representations and new forms of visualization e.g. maps and infographics.
· the "decision makers", generally considered as the top executives at all governmental levels (from the single facility up to the national government) will be able to use indicators and parameters available at the Portal more easily and widely. This will enhance the capacity of the system tobe accountableof their main results, increasing their chances to improve through appropriate organizational changes. The possibility of carrying out faster and more objective multidimensional evaluations, will allow supporting evidence-based decisions through the direct involvement of professionals and decision makers.
FIGURE 1. THE TRANSPARENCY CYCLE IN THE PORTAL PROJECT
Sections of the Portal
The Portal will be divided into sections focusing on specific activities carried out by different working groups, some of which already operate in the Italian NHS, and others that will be specifically created for the purpose of informing the public.
The contents of the Portal will by no means replace the expert advice of the personal doctorbut will deliver a coherent set of information that can orient the user across the multiple options offered by the national health system. Le informazioni del Portale provengono da fonti accreditate sul piano istituzionale, coincidenti con i dati ufficiali messi a disposizione dal Ministero della Salute e dalle Regioni e Province Autonome, che collaborano con gli altri enti vigilati per provvedere alla redazione del Portale. Le diverse sezioni consentiranno di individuare informazioni specifiche, per trovare risposte ai propri bisogni di cura personali.
In particolare, saranno previste le seguenti sezioni vedi Figure 2:
- "my health”, addressing health needs from the main real and/or perceived priorities, on the basis of rigorous data and epidemiological methods, to underpin the analysis of a specific problem, whose priority will be either objective or perceived by the user, searching for clarifications around a subject. The primary purpose of this section is to raise the level ofhealth literacyalso by capturing (and resolving) unfounded beliefs (e.g. "fake news"), for which there is the need of providing continuous updates on new care and/or technology offered, through expert advice.
- "my services,”which will highlight with all the necessary updates the services and procedures needed to access them for a specific problem. The Portal will provide precise indications on the subject, including links that will specify how to gain access to the specific service and how to book them via direct links to the facility, whenever possible.
- “Find your provider”, which will provide an updated map of all existing care providers for a specific service in a certain area. Through a cartographic interface, it will be possible to search for a hospital or community care centre where a specific health problem can be treated. The search can be carried out by setting the distance in kilometers from a certain location, or the specific region, province or municipality of interest. The results will be displayed on a user-friendly interface (also available via app), where each facility will be displayed together with relevant information (e.g. address, details for booking exams, services available with related waiting times, organizational structure and key activity indicators).
- "Quality of Care”, which will contain all the production of data and reports of the National Results Program (PNE) coordinated by AGENAS, including hospital performance indicators to compare the effectiveness and appropriateness of the main facilities in the National Health System. This section of the Portal will extend the usability of all products delivered by the PNE project, through a targeted interface for different types of users.
The sections of the Portal will be created in multilingual format, initially in Italian, English, French, Spanish and German. In this way, all linguistic diversity will be protected, promoting usability in compliance with the the Directive 2011/24/EU concerning the application of patients' rights for cross-border healthcare.
FIGURE 2. SECTIONS OF THE TRANSPARENCY PORTAL
Strategy
The Portal will be created through a strategy aimed at overcoming the limitations of the fragmentation of sources and lack of timeliness of health information regarding services provided across the country. To this end, the Portal will propose a strategy that will integrate multiple sources through a participatory approach that will share the construction of the Portal across a plurality of stakeholders.
The Portal will pursue its objectives through two innovative approaches Figure 3:
· integration between the different information sources existing at national, regional and local level, through the creation of a unique point will connect
a plurality of accredited users through common tools and specifications (e.g. data model, etc);
· active involvement of different types of "expert" users who operate in different clinical and/or institutional contexts, managing data and information
useful to orient the public towards the best available evidence and health services.
The project will access and publish clinical and health data in aggregate form, in compliance with the procedures established by the current legislation, and in accordance with the GDPR and the Privacy Authority.
A key strategic element for the realization of the two points outlined above will be the establishment of specificcommunities of practice that will directly contribute to the contents of the Portal by adding relevant information through a dedicated platform.
In this way, it will be possible to participate to the construction of the Portal in two different ways: a) directlyby providing contents for any relevant adjustment or addition to the text; b) indirectlythrough the transmission of data to the coordination center (in micro-aggregated and anonymous form, in full compliance with the GDPR), using a specific interoperability tool, that will be developed ad hoc to connect collaborative bodies and institutions.
The communities of practice will be created through specific Agreements between AGENAS and the following bodies:
· Regions and Autonomous Provinces;
· University departments and research centres (areas of Hygiene, Statistical Sciences, Engineering);
· Scientific associations in reference clinical areas (such as cardiology, general medicine, intensive care, etc.);
· Patients, citizens, consumers and user associations.
The Communication Plan will include actions specifically aimed at strengthening involvement and active participation through an elaborate communication and dissemination strategy implemented throughout the project To this end, local events and roadshows will be carried out to consolidate the collaboration of communities of practice and dissemination to the the general public including generalist television to reach segments of the population that are hard to reach with an informative approach of accompaniment and direction towards the use of the Portal.
TheSEO analysis will assess the usage of the Portal.
FIGURE 3.STRATEGY OF THE TRANSPARENCY PORTAL
The methodology
The construction of the Transparency Portal involves the planning and progressive application of tools and methods derived from various fields of social sciences, information, statistical sciences and information technologies in the health field.
Envisages the adoption of the following techniques Figure 4:
- Detection of user profile needs (target groupthrough the combined use of the following: a) systematic review of health needs, through the evaluation of the scientific literature and the use of statistical reportsgrey literature); b) analysis of perceived needs, through online surveys (online and focus groups with different categories of users, as well as the structured analysis of access to the Portal (web analytics)web analytics).
- Analysis ofinterface (UX analysisto optimize the user experience through user-friendly toolsuser friendlyand innovative forms of visualization e.g. infographics and evaluation of the use of the Portal (SEO Analysis).
- Activation of communities of practicethrough the following: a) systematic review of organizational methods; b) agreement with organizations and associations; c) IT platform to involve stakeholders in the active participation of definition, collection and interpretation of data for continuously improving the Portal, through the participation and collegiality of its evolution; d) communication initiatives..
- Use of modern information technologies allowing a) access to information at any time, from any place, with any device (through tools such as the the smartphone app b) contributing to the writing of the contents the Content Management System - CMS,the the interoperability systemand the Chatbot).
- Organization and integration of all databases through a common data model fully referenced and documented through a data dictionary (data dictionary) consultabile internamente tramite strumenti di backofficeThe database will be integrated in the Portal, allowing to populate all relevant areas for different user profiles. The system will a continuous flow of open datafor research and analysis of health services, based on the experience of the Covid AGENAS Portal (e.g. using advanced tools to exchange anonymised data, e.g. GitHub).
- Flexible and customizable visualization of statistical results through tools for different types of users, e.g.: a) graphic tools of immediate understanding for the general public like infographicsb) multidimensional indicators for professionals and decision-makers treemap, starplots, etc.); c) summary graphics for "intelligent" data "reading"performance intelligence), will be pursued through the full integration of the PNE into the Portal, and the creation of composite evaluation systems with customizable indicators Better Life Index of OECD.
FIGURE 4. METHODOLOGY OF THE TRANSPARENCY PORTAL
The workplan
Un team di progetto provvederà a consegnare il Progetto Operativo del Portale in ogni sua fase su base annuale, in modo da definire il protocollo da seguire per lo sviluppo del sistema informativo, da realizzarsi in maniera continuativa attraverso nuove versioni rilasciate in sequenza.
The workplan began on 1 January 2022, and includes the following steps Figure 5:
· During the first year, the first version of the Portal has been released as web analytics utilizzando lo strumento SEO, evidenziando al meglio il profilo tipico dei visitatori del sito e dei portali esistenti attraverso l’analisi degli scenari (Portale 1.0).
· During the second year, various WPs have been developed to deliver a series of key products, e.g. the dedicated smartphone App for remote use, which will be made available to all users via Play Store and IOS A CMS has been also installed to allow the autonomous creation of contents in the Portal. A communication plan will be written and systematic reviews on health needs and communities of practice will be carried out. In terms of perceived needs, target group surveys and focus groups will be organized to deal with the specific issues of perceived needs and new proximity services. New contents will be added on a range of areas of interest (e.g. waiting lists, time-dependent networks, etc), and the National Outcomes Project will be restructured specifically for the Portal. The state of the art of PNRR projects in the field of health (Mission 6) will be also presented through an intuitive interface. Finally, the governance structures will be strengthened, and the editorial schedule will be launched, including communication activities at different levels and a public event to present the project, along with best practices at the international level (Portal 1.2).
· During the third year, all communities of practice will be activated, and a complete database of community care will be consolidated to update the cartographic base. The technology will include the creation of a chatbot that will be integrated into the Portal. From the statistical point of view, a platform for the multidimensional evaluation will be launched and the development of open data will be also tested (Portal 1.4).
· In the fourth year, the Portal will implement access by user profile (for users, professionals and decision-makers), offering different approaches to monitoring and evaluation. While a more technical and detailed vision will be made possible for experts including epidemiologists, statisticians, analysts, economists, the interpretation for decision makers will be also enhanced using a range of tools. At the same time, the Portal will fully develop multidimensional tools that will be fully customisable by the user (Portal 1.6).
· During the last year, the system will reach a maturity phase, and the level of user satisfaction will be carefully measured. The issue of platform sustainability and future management will be addressed in a collegial debate, involving all key players. The version of the system that will integrate these aspects will be called (Portal 1.8).
· Upon completion of the last revision phase, and therefore on the closing date of the project, the final version of the Portal (Portale 2.0).
FIGURE 5. THE WORKPLAN OF THE TRANSPARENCY PORTAL
There governance
The governance of the Portal Project is assured by a small number of decision-making levels, organized in a streamlined manner Figure 6.
The Administrative Director of the Project (RUP) and the Executive Director (DEC) operate within the AGENAS Telemedicine Project Unit, which refers to the Health mission unit of the PNRR.
The project is governed by Steering Committee, coordinated by the DEC and composed of the RUP, as well as representatives of National Authorities selected, together with Professional and Trade associations (see Working Team).
FIGURE 6. GOVERNANCE OF THE PORTAL PROJECT
Duration
The project started on 1st January 2022 with a duration of 5 years, and an expiry date set for 31st December 2026.
The project is funded by the Next Generation EU Program of the European Commission, the National Recovery and Resilience Plan (PNRR), Mission 6, Health, managed by the Telemedicine Project Unit of the implementing body AGENAS.
