Published on April 22, 2026
For reasons of better readability, the simultaneous use of masculine and feminine language forms has been omitted. All personal designations nevertheless apply to both genders.
APST – Service description for patients (Version – 2 – 4.1)Table of contents

1. Concept description
2. Description of services
   2.1 Data management
   2.2 Document management
   2.3. Patient reviews
3. Description of the Outpatient Partner Care Portal (APVP)
   3.1 User roles and authorizations
   3.2. Data provided
4. Ensuring data protection and data security
5. Free provision and financing

1. description of the concept

The Outpatient Partner Concept (hereinafter “AP Concept”) includes the digital management platform “Outpatient Partner Care Portal” (hereinafter “APVP”) and the mobile applications ALS app and SMA app.

The APVP internet platform is a communication and management platform. It combines an electronic care record with digital process control as well as the ALS app and SMA app for the purpose of care research.

The offer to participate in the AP concept is based on the patient’s wish and voluntary cooperation. The patient is entitled, informed and able to terminate participation in the AP concept at any time and without giving reasons.

The AP concept is offered to patients under the following special conditions.

for diseases with special conditions:

• Serious illness
• Complex chronic disease
• Rare disease
• High demand for healthcare research

Due to the special medical conditions and care requirements, the AP concept is particularly suitable for patients with the following diagnoses and syndromes:

• Amyotrophic lateral sclerosis (ALS)
• Spinal muscular atrophy (SMA)
• Spastic spinal paralysis (SSP)
• Parkinson’s syndrome (severe or special course)
• Multiple sclerosis (severe or special course)
• Defect syndrome after stroke (severe or special course)
• Defect syndrome after traumatic brain injury (severe or special course)
• Dementia syndrome (severe or special course)
• Tetraparesis
• Hemiparesis
• Spasticity syndrome
• Cachexia syndrome
• Dysphagia syndrome

2. description of the services

2.1 Data management
Data management is a service provided by data managers. It includes the collection of medical information as well as its digitization and provision to patients and medical partners. Data management includes the following services:

• Contacting patients, relatives or legal representatives by telephone
  to collect master data and medical data
• Digitization of master data and medical data in the electronic
  care file of the APVP
• Reading doctor’s letters and other medical documents to record and
  digitize diagnostic data in accordance with ICD-10

2.2 Document management
Document management is a service provided by data managers. It includes the receipt, recording, archiving and provision of medical documents. Document management includes the following services:

• Scanning, indexing, uploading and versioning documents (e.g. doctor’s letters)
• Creation, circulation and versioning of document templates (e.g. forms)

2.3 Patient evaluations
Patients or persons authorized by them also have the opportunity to evaluate the course of their illness, medical devices and medical services. The patient’s cooperation can make an important contribution to the improvement of healthcare or to the optimization of future medical devices, treatments and care processes through targeted suggestions for improvement. Patient assessments are carried out by trained personnel. The assessment involves interviewing patients in direct contact, by telephone or by e-mail.

The patient assessment includes the following services:

• Creation of interview documents (print) and configuration of interview software (online, e-mail dispatch)
• Conducting telephone surveys, direct surveys, sending online assessments
• Evaluation of patient assessments

3. description of the Outpatient Partner Care Portal (APVP)

The APVP internet platform (https://www.ambulanzpartner.de) is the digital communication and management platform. It is the communication medium between the professional coordinators and care partners in order to manage the provision of medical aids and remedies or the supply of medication and nutrition. The use of this platform for patients and medical partners is not required; it is optional. Patients can use the care management services without having to use the APVP software or any other computer application. As a result, patients can also participate in the AP concept without technical knowledge or access to the Internet. Patients and medical partners are given the option of obtaining their own access to the APVP Internet portal. This access gives patients and medical partners the option of viewing the organizational and communication processes between the coordinators and care partners. Patient-related data is recorded on the APVP, which is presented in 3.2. Specific access authorizations have been defined for access to personal data, which are described in 3.1.

3.1 User roles and authorizations
A central feature of data protection is the limitation of access rights to the data required for the user role. This means that not every user of the AP portal can view all the data stored there. The limitation of data access was specified for the following user groups.

Medical partners
All data in the portal for those patients for whom a treatment order exists (no data availability for patients for whom no treatment order exists)

Network manager, data manager and administrator role
Complete data set of all patient and care-related data
Complete data set of all medical partners and care partners
Complete data of patient evaluations (survey management) and participant groups (participant management)

3.2 Data provided
Extensive patient-related data is recorded and stored on the basis of the detailed consent of the
patient on the AP Internet portal in a systematic menu navigation using free text or
selection lists. The data fields are to be understood as input options,
which are not recorded for every patient

4. ensuring data protection and data security

The APVP internet platform is administered by APST, while the patient-related
data is stored in a protected database. APST ensures that data protection requirements are met. To this end, there is a cooperation between APST and Charité – Universitätsmedizin Berlin. Charité has taken over the hosting of the personal data. The data is stored in the Charité’s data security architecture. In strict contrast to all forms of open Internet applications, the APVP is strictly confidential and only permitted for authorized users. Patients have expressly consented to the use of their data for the purpose of their outpatient care. APST works exclusively with medical partners and care partners who have agreed to the use of patient data for the purpose of care research and strict compliance with data protection. The conditions of data protection are regulated in a separate data protection declaration. Consent to data protection by medical partners is a prerequisite for using the APVP Internet platform.

5. provision and financing free of charge

The APVP’s services and software are provided free of charge for patients and their relatives. The APST services for patients are financed from the fees paid by the care partners and from other forms of revenue (third-party funding of APST). APST services are also provided free of charge to medical partners, as these partners incur additional costs without any corresponding economic benefit. Patients and medical partners contribute to the financing of the AP concept by agreeing to the collection and use of healthcare research data (on the basis of informed consent), which
is used scientifically and economically by the APST (third-party funded projects of the APST). Overall, the financing of the AP concept follows the “shared value concept”, in which the revenues of the APST (through fees of the care partners and third-party funding) are used to create added value for society (free provision for patients).