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AS6_BUC1

The Madeira use case will implement the xShare Yellow Button allowing portability of the EHR from SEIS-RAM for patients from the Regional Health System in Madeira, and for tourists to share EHR data with local health authorities. The patient summary data (patient ids, demographic, allergies and intolerances, immunizations, history of procedures, clinical reports, diagnostic results, discharge reports, appointments, and surgeries) is stored in the SEIS-RAM system. The SEIS-RAM system communicates with the digital solutions previously developed, i.e. the patient portal and the mobile app from SEIS-RAM allowing patients to access this data upon registration and authentication. Both the patient portal and the mobile app require a 2-point authentication according to data register upon the Regional Health System registration, thus GDPR compliant. 

The xShare Yellow Button will be installed on the patient portal and the mobile app, allowing the EHR to be accessed, downloaded, and then shared. 

Once the user presses the xShare Yellow Button, the EHR is download and the patient can share their health data in the different scenarios described.

The button should offer two options for downloading health data, in a format that is readable by the user (e.g. pdf) and in an EU standardised format that complies with standards i.e. with language and coding required by health institutions. By having access to their health data in a standardized format, the patient can then share it with a health institution or health professional of their choice and even across borders. Also, the readable format for the user is of most importance, to encourage and motivate the use of the button by the user, thus additionally increasing knowledge of their health and well-being. 

The possibility of placing the button in the app allows patients to always have access to their health data and the ability to share it at anytime and anywhere.

The ability to share the EHR will enable better management of health resources, more personalised healthcare and better preparedness and resilience within health population.

 

Document Version: 
V1.0
Responsible party: 
Madeira Region - Potugal - add email address
As-Is Situation: 

With the Madeira Health Service own HIS, SEIS-RAM, each patient has a unique EHR, featuring all medical records and social clinical data within the public health sector. This system aggregates more than 500,000 EHR and ensures interoperability with several external services such as the National User Registry (RNU), the communication and image archiving system (PACS), the Modulab, the National Cancer Screening System and Madeira’s Medical Emergency Register (REM RAM). SEIS-RAM comprises a dashboard where doctors, nurses and health professionals can manage and monitor provided health care services throughout public health facilities, as this system establishes communication between hospitals and health centres in the Madeira Archipelago.

Following this system, a patient portal was set up in which patients from the Regional Health Service have access to their patient summary in SEIS-RAM, namely: ID and demographics; allergies and intolerances; immunizations; history of appointments; medical reports; diagnostic results; surgery reports and emergency discharges. Health data featured on this portal can be exported in PDF format thus allowing patients from the public sector to share their health data with external health care providers e.g. private health sector. Additionally, a mobile app was also developed allowing the same functionalities of the previously described patient portal.

Previously, by taking part in Smart4Health project, also some additional work aiming health data portability was done in SEIS-RAM. Data from EHRs in SEIS-RAM (demographics, allergies and intolerances, diagnoses, and clinical exam reports) was mapped and sent in HL7/FHIR standards to the Smart4Health platform upon user request. Further enabling health data portability while seeking private/public care and eHealth tourism. 

Due to a cyber-attack occurred on the SEIS-RAM system in August 2023, both structures mentioned above (app and portal) are not currently active as since then their security was compromised. 

All efforts have been made to resume its operation according to GDPR and it is expected to be soon reactivated for patients.

Currently available products/services and its vendors: 
In-house HIS (SEIS-RAM), Regional patient portal, and Regional APP.
Actors/Users and their Roles: 

Local patient
(user 1)

Can access and share EHR data via the xShare Yellow Button in different scenarios:

  • Scenario 1: the user wants to access health data to be more aware/knowledgeable of their health status (no trigger involved).
  • Scenario 2: the user needs to share health data with the private/public health sector (continuity of care/seeking a second opinion/medical emergency).
  • Scenario 3: the user needs to share health data across border (continuity of care/seeking a second opinion/medical emergency).

Tourist
(user 2)

Shares EHR data with health authorities in Madeira in different scenarios:

  • Scenario 1: the user needs to share health data with the local health sector (continuity of care/seeking a second opinion/medical emergency)
  • Scenario 2: the user needs to share cross border health data with the local health sector (continuity of care/seeking a second opinion/medical emergency)

Health professional (medical doctors and nurses)
(user 3)

Receives EHR data via the xShare Yellow Button in different scenarios:

  • Scenario 1: the user needs to access health data from user 1 (continuity of care/seeking a second opinion/medical emergency)
  • Scenario 2: the user needs to access health data from user 2 (continuity of care/seeking a second opinion/medical emergency)

IT professional

Developer/tester- develops and tests the xShare Yellow Button within the SEIS-RAM app/ patient portal.

Smart4Health platform

Source of information and knowledge as a pre-existing health data sharing system for smart guidelines and medical tourism.

SEIS-RAM system

EHR data source.

User Perspective: 
When using the xShare Yellow Button the local patient/user 1 will be able to download the EHR from the Regional Health service and access and share health data with public or private health institutions and across border since the EHR information will follow common standards in order that it can be read and interpreted externally, thus allowing better health care with less time and associated costs.
From the collected testimonies, this was presented as a major benefit when compared to the current situation. Having a quicker way to access health data was also emphasised by user 1, as well as the fact that the button will make it easier to consult medical second opinions whether inside or outside Madeira.
Also, the ability to interpret health data was also emphasised by user 1, so that besides allowing the portability of health data in standard format, the button should also allow access to this information in a user-readable way for patients. In this regard, it was suggested that data should be structured by medical speciality (e.g. cardiology, neurology, and others) and not by medical procedure.
Health care in Madeira Island will be facilitated for tourist/user 2 who visit Madeira to carry out medical and wellness care or unplanned care during their holidays since it will enable tourists to share their health information with the local health sector, thus allowing better health care in a timely manner. This situation has been highlighted by user 2, particularly in the event of a medical emergency in which no health data is known about the patient.
The xShare Yellow Button will allow the health professional/user 3 to provide better medical care and save time and delays in the provision of health care, allowing a more personalised response to health care and not duplicating resources, thus saving available resources (e.g. medication, lab and imaging exams).
User 1 and user 3 were unanimous that the best place for the button to be presented would be in the SEIS-RAM app and the user portal, thus allowing the use of known structures to these players, with easier access to health data. Also, the app was considered the best site of the two, due to the possibility of accessing it via a mobile system such as a smartphone.
Another situation that was reinforced by the boards of directors consulted was the benefits that can be provided by the xShare Yellow Button in standardizing provided health services and their personalization. It is a real fact that duplication of health examinations occurs countless times between health institutions (public and private), often taking consequences for the patients and their wellbeing, such as increased exposure to ionizing radiation, such as x-rays and gamma rays. The xShare Yellow Button and the sharing of health data will help resource management allowing a more personalized healthcare.
System Perspective: 
The existing portal/app from SEIS-RAM will enable the xShare Yellow Button to download EHRs in HL7/FHIR format and in PDF format. The implementation of the xShare Yellow Button will benefit from these pre-existing digital solutions to the extent that they can enable downloading information from the EHR once the patient has been registered and thus in accordance with GDPR. The full implementation of the xShare Yellow Button and the fulfilment of cross-border standards requires a clear definition of protocols and guidelines to be used in mapping and structuring of the local HIS.
Health Information Domain(s) - HIDs: 
Patient summary
Medical image and image report
Laboratory Results
Discharge report
Scenarios for the xShare Yellow Button: 

HIDs

xShare Yellow Button basic functionality

Maturity

 

Download

One-time share

Linked options

Start TRL

End TRL

Patient summary

X

X

 

6

9

Electronic prescription

 

 

 

 

 

Electronic dispensation

 

 

 

 

 

Medical image

X

X

 

2

8

Image report

X

X

 

3

9

Laboratory results

X

X

 

4

8

Discharge report

X

X

 

5

9

Telemonitoring

 

 

 

 

 

Care plan

 

 

 

 

 

National/regional strategy: 
• Allow people to exercise their data portability rights under GDPR with emphasis in medical tourism and the public/private sector continuity of care.
• Empower individuals to control their health data and ensure interoperability and security within health care providers between public and private health sectors, fostering a single market for digital health services and products.
Strategy towards EHDS: 
• Improve quality of care, guarantee patient safety, optimise costs providing individuals and communities with information to make better health decisions. • Ensure an adequate level of coordination of health information. • Maximise the sharing of information and knowledge to support decision making. • and monitor health surveillance actions.
Business Goals/Benefits and KPIs: 

The xShare Yellow Button to be featured in MADEHRAS will allow people to exercise their data portability rights under GDPR in a regional network with emphasis in medical tourism and for the public/private sector continuity of care. This will empower individuals to control their health data and ensure interoperability and security within health care providers between public and private health sectors, fostering a single market for digital health services and products.

The xShare Yellow Button will be employed to facilitate continuity of care in Madeira within citizens and tourists.

  • KPI 1: Number of patient/users downloading the EHR through the xShare Yellow Button (1-2% of the Madeira Regional Health Service patients, users 1 and 2).
  • KPI 2: Number of sharings via xShare Yellow Button (50% of EHR data sets download through the xShare Yellow Button).
  • KPI 3: Number of EHR data sets download through the xShare Yellow Button (200-500 data sets)
  • KPI 4: Number of tourist/users sharing EHR data with local health authorities in Madeira (1-2% of user 2, seeking medical care in the Madeira Regional Health Service).

 

Application: 
The xShare Yellow Button will be integrated in the App from SEIS-RAM and in the Patient Portal from SEIS-RAM. Enabling the identified HIDs to be shared in the EEHRxF. These HIDs can be shared separately upon selection.
Data Preconditions: 
Before this use case can start it should be established a common standard and mapping for the HIS from the Regional Health Service. Training for the IT professionals is in need to establish the correct mapping of the local HIS.
System Preconditions: 
SEIS-RAM must have the patient’s health data within its records. Given that at the moment whether the SEIS-RAM app, whether the patient portal is not available, these must be restarted before the starting of this use case. Also, it should be harmonized the underlying specifications for the EEHRxF.
User Preconditions: 
Patient/tourist/health professional user need to present digital literacy.
All users need to have access to IT resources, computer, phone or tablet.
Patient/user needs to be register in the patient portal and/or the mobile app from SEIS-RAM.
Patient/user must be an active user of the Regional Health System.
Trigger: 
Patient and tourist/user seek a second medical opinion outside the public health sector or across borders. Tourist/user needs planned and/or unplanned care during their holidays.
Challenges/Limitations: 
• Currently inaccessible digital structures (mobile app and patient portal).
• xShare Yellow Button location and patient summary requirements.
• Lack of FHIR standards and FHIR mapping establishment including common content specifications, HL7 FHIR implementation guides.
Involved stakeholders in the BUC definition: 
• Local patient (user 1) – 3 persons.
• Tourist (user 2) – 2 persons.
• Health professional (user 3) – 3 persons.
• IT professional – 2 persons.
• Local authorities - board of directors for the Health Administration Institute (IASAÚDE- IP- RAM) and the board of directors for Madeira Regional Health Service (SESARAM).
Application of pseudonymisation filters: 
To be assessed.
The implementation of the xShare Yellow Button will benefit from pre-existing digital solutions to the extent that they can enable downloading information from the EHR once the patient has been registered. These require a 2-point authentication according to data provided upon the Regional Health System registration
Basic Workflow: 

Image: EHRs in the SEIS-RAM health information system from the Madeira Health Service is connected to the SEIS-RAM app and the SEIS-RAM patient portal enabling citizen’s access to their personalised health data. The xShare Yellow Button will be implemented in these pre-existing digital solutions to the extent that they can enable downloading information from the EHR once the patient has been registered in the Madeira Health Service. The existing portal/app from SEIS-RAM will enable the xShare Yellow Button to download EHRs in the EEHRxF according to standards and guidelines. The EHR exchange will foster a genuine single market for electronic health record systems providing a consistent and efficient system to increase health systems resource management and surmount health threats by increasing resilience and preparedness in healthcare.

Alternative Workflows: 

Select only one digital solution to present the xShare Yellow Button, the mobile app or the patient portal.

Select specific and the most important health data from the patient summary (e.g. immunization, clinical reports, etc) to be download in HL7/FHIR format when using the xShare Yellow Button.