Here you will find the General Terms and Conditions that apply to you.
Service description for the use of the Outpatient Partner Care Portal by international medical partners
Published on January 1, 2018
For reasons of better readability, the simultaneous use of male and female language forms is avoided. All personal designations nevertheless apply to both genders.
Table of contents
- Concept description
1.1. principles
1.2. medical research
1.3. principle of the open platform - Description of services
2.1. patient assessments
2.2. care coordination
2.3. data management
2.4. document management
2.5. complaints management - Description of the Outpatient Partner Care Portal (APVP)
3.1 User roles and authorizations
3.2 Data provided - Principle of multiple benefits
4.1. Benefits for patients
4.2. Benefits for medical partners
4.3. Benefits for providers
4.4. Benefits for society as a whole - Ensuring data protection and data security
- Free provision and financing
- Concept description
1.1 Principles
Ambulanzpartner Soziotechnologie APST GmbH (hereinafter referred to as “APST”) offers medical research services outside and inside Germany. Care management services are only offered within Germany. The services serve to improve research, coordination, communication and networking between patients (and their relatives), doctors and medical assistants in practices, outpatient clinics and hospitals, scientists (“medical partners”) and providers of drug therapy (pharmacies, manufacturers of drugs and medical devices), nutritional therapy and providers of remedies and aids (“care partners”). The Internet platform “Ambulanzpartner Versorgungsportal” (hereinafter “APVP”) is the communication and management platform on which medical research and care coordination are digitally supported. It combines an electronic care record with digital process control for the purposes of medical research and care management. The outpatient partner concept (hereinafter “AP concept”) includes a combination of services with the APVP internet platform.
The offer to participate in the AP concept is based on the patient’s wish and voluntary cooperation. The patient has full participation rights at all times and is only supported to the extent desired. The patient is entitled, informed and able to terminate participation in APST medical research and care management at any time and without giving reasons.
The AP concept is offered to patients under the following special conditions.
For illnesses with special conditions:
– serious illness
– complex chronic illness
– rare illness
Due to the special medical conditions and care requirements, the AP concept is particularly suitable for patients with the following diagnoses and syn-dromes:
– Amyotrophic lateral sclerosis (ALS)
– Spinal muscular atrophy (SMA)
– Spastic spinal paralysis (SSP)
– Parkinson’s syndrome (severe or specific course)
– Multiple sclerosis (severe or specific course)
– Defect syndrome following stroke (severe or specific course)
– Defect syndrome following traumatic brain injury (severe or specific course) – Dementia syndrome (severe or specific course) – Tetraparesis – HemiparesisTraumatic brain injury (severe or specific course)
– Dementia syndrome (severe or specific course)
– Tetraparesis
– Hemiparesis
– Spasticity syndrome
– Cachexia syndrome
– Dysphagia syndrome
If the patient wishes to participate in the AP concept, the necessary documents will be made available to APST. On the basis of informed consent, the patient instructs APST to provide their data for medical research, care management or individual services. For this purpose, the patient or a legal representative signs a declaration of consent authorizing medical research, care management by APST and the digitalization of personal data on the APVP internet platform. Once the necessary declarations have been submitted, an electronic care record is created.
1.2. Medical research
The AP concept pursues a dual approach: Data generated in the context of medical research and/or care management is used – on the basis of informed patient consent – for a systematic analysis of care and the course of the disease. This creates a “double effect”: the digitization of care data on the APVP directly serves the coordination of care and at the same time medical research through the evaluation of “routine data” (data from standard care) and patient self-assessment data. All patients who make use of the APST’s care management and medical research are also invited to participate in a register in which medical data on medication and nutritional care, the provision of aids and remedies, socio-medical data and patient self-assessment data are scientifically evaluated and published for the purpose of medical research. Consent to medical research in the AP concept is given on the basis of separate study information and a declaration of consent.
1.3. Principle of the open network
Voluntary participation, optional use and the unconditional option to end participation are basic principles of the AP concept. Participation is not an “either/or” decision. This means that care can be coordinated within the AP concept, while – in parallel or at another time – other care can be provided outside the AP concept. Care partners can make use of the APST services or terminate their participation without formal barriers. The entirety of participating patients, care partners, medical partners and coordinators is referred to as the care network. The participation of patients, care partners and medical partners in the AP concept is dynamic and has the character of an open platform.
- Description of services
The services are used for communication and networking between patients, doctors and care partners and can be used together or as individual components. The modular AP service architecture consists of the following components:
2.1. Patient reviews
Patients or persons authorized by them have the opportunity to evaluate the course of their illness, medical devices and medical services. Through the patient’s cooperation, an important contribution can be made to improving healthcare or optimizing future medical devices, treatments and care processes through targeted suggestions for improvement. The assessment involves interviewing patients via the APVP, the ALS and SMA app, by telephone or by email.
Patient assessment includes the following services:
– Creation of interview documents and configuration of interview software
– Conducting telephone interviews, sending online assessments
– Evaluation of patient assessments
– Presentation of patient assessments on the APVP and other communication channels (newsletter; print media, publications)
2.2. Supply coordination
Care coordination is a service provided by non-medical coordinators at APST. It includes organizational tasks in the provision of aids and remedies as well as medication and medical devices.
2.3. Data management
Data management is a service provided by coordinators and data managers. It includes the collection of self-assessment data, medical information and care data as well as their digitization and provision to patients, care partners and medical partners. Data management includes the following services:
– Digitization of master data, medical data and care data in the electronic care file of the APVP
– Readout of doctor’s letters and other medical documents to record and digitize diagnostic data in accordance with ICD-10
– Readout of doctor’s letters and other medical documents to record and digitize care data and medical data
2.4. Document management
Document management is a service provided by coordinators and data managers. It includes the receipt, recording, archiving and provision of medical documents. Document management includes the following services:
– Collection and mailing of print documents (e.g. doctor’s letters, therapy reports, medication plans, care requests, trial protocols)
– Scanning, indexing, uploading and versioning of documents (e.g. doctor’s letters, therapy reports, medication plans, care requests, trial protocols)
– Creation, circulation and versioning of document templates (e.g. medication plans, care requests, forms)
- Description of the Outpatient Partner Care Portal (APVP)
The APVP internet platform (www.ambulanzpartner.de and www.als-center-apst.com) is the digital communication and management platform through which all services are documented and managed. It is the communication medium between the professional coordinators, medical partners and care partners in order to manage medical research and care management. The use of this platform for patients and medical partners is not required; it is optional. Patients can use the medical research and care management services without using 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. Patient and care-related data is recorded on the APVP, which is presented in 4.2. Specific access authorizations have been defined for access to personal data, which are described in 4.1.
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.
3.1.1 Medical partners and care partners
– All data in the portal of those patients for whom there is a research or care mandate (no data availability of patients for whom there is no mandate for action)
3.1.2 Coordinator role
– All data in the portal of those patients for whom a research and/or coordination mandate exists (no data availability of patients for whom no research and/or coordination mandate exists)
3.1.3 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 and care-related data is recorded and stored on the AP Internet portal on the basis of the patient’s detailed consent in a systematic menu navigation using free text or selection lists. The data fields are to be understood as input options that are not recorded for every patient and every care process.
| Data category | Data fields |
| Contact details | – Main address – Secondary addresses – Telephone numbers of the patient (lists) – Telephone numbers of relatives and other authorized persons (lists) – Type of living space (house, apartment; rented, owned) – Living space with number of rooms – Number of steps if stairs are present – Floors – Existence of an elevator – Accessibility |
| Social profile | – Marital status – Number of children – Place of residence or care (selection menu) – Occupation – Last occupation – Care level – Care insurance benefits – Living will – Legal guardianship – General power of attorney |
| Cost unit | – Insurance number – Exemption from co-payment – Name of health insurance (selection menu) – Responsible branch of health insurance – Postal address of health insurance – Date on which the insurance card was scanned |
| Medical profile | – Main diagnosis according to ICD-10 (drop-down menu) – Secondary diagnoses according to ICD-10 (drop-down menu) – Respiratory care (drop-down menu) – Nutritional care (drop-down menu) – Contact details and provider profile of medical outpatient clinics, practices and clinics, nursing teams, social care centers, nursing consultations and other medical facilities involved in the patient’s care – Contact details and provider profile of medical and auxiliary care providers and pharmacies |
| Documents (scans of print documents) | – Doctor’s letters – Consent forms – Care requests – Care trial reports – Medication plans – Therapy reports – Transition forms – Healthcare proxy – Living will – Other documents |
| Provision of remedies | – Ongoing therapeutic products processes (overview) – Completed therapeutic products processes (overview) – Ticket number of the remedy; date of the care request – Prescription outside the standard case; therapy area (selection menu) – Indication key (selection menu) – Type of remedy (selection menu) – Prescription quantity (units) – Frequency recommendation (selection menu) – Therapy duration in minutes – Necessity of treatment at home – Therapy report – Guiding symptoms for the provision of remedies – Therapy goals for the provision of remedies – Date of issue – Date of the planned start of treatment – Prescriber of the remedy – Contact details of the prescriber – Supply partner of the remedy – Contact details of the supply partner – Date and content of the remedy requirement – Date and content of the supply partner’s prescription request – Date and content of the prescription request to the doctor – Date of prescription by doctor – Date of receipt of the prescription by the care partner – Date of start of treatment – Date of completion of treatment – Number of treatment units provided per week – Date and reason for canceling the treatment |
| Provision of aids | – Open resource processes (overview) – Completed aid processes (overview) – Product description; Ticket number – Person who defined the requirement – Main requirement for the provision of medical aids; medical aid group – Product description of the aid – Specification of the aid – Aid name; date of prescription – Supplier of the medical aid; manufacturer of the medical aid – Prescriber of the medical aid – Contact details of the prescriber – Date of the supply requirement – Date of the supply request – Date of first contact between coordinator and patient – Date via supply request – Date and content of the initial contact between patient and care partner – Date and content of consultation and testing of the patient by the care partner – Date of prescription request by supply partner – Prescription text for the provision of medical aids, group, product, specification of the provision of medical aids – Date of prescription request to doctor – Date of prescription issued by doctor – Date of receipt of the prescription by the supply partner – Date of the application for cost coverage submitted by the care partner to the health insurance company – Date of assumption of costs – Date of rejection (if applicable) |
| Medication | – Completed medication (overview) – Current medication (overview) – Ticket number of the medication – Pharmacy central number (PZN) of the medication (if applicable) – Trade name of the medication – Ingredient of the medication – Dose of the medication – Date of the start of the medication (if applicable) – Date of the end of the medication (if applicable) – Dosage schedule Dose of the medication – Start date of the medication – End date of the medication (if applicable) – Dosage regimen – Indication of the medication – Supply partner (pharmacy) – Prescriber of the medication – Contact details of the prescriber |
| Clinical scales | – Amyotrophic Lateral Sclerosis Functional Rating Scale revised (ALSFRSr) with 12 questions – Amyotrophic Lateral Sclerosis Functional Rating Scale extended (ALSFRS-ex) with 15 questions – Functional Ambulation Categories with one question – Questionnaire on health-related quality of life (EQ-5D-5L9) with 5 questions – Measure Yourself Medical Outcome Profile (MYMOP) – Net Promoter Score (NPS) with one question – Treatment Satisfaction Questionaire for Medication (TSQM) with 9 questions |
- Principle of multi-sided benefits
The AP concept is based on the basic principle of a multi-sided platform. In the platform structure, different partners make different contributions to the platform and generate role-specific benefits.
4.1. Benefits for patients
For patients and their relatives, the focus is on support in participating in medical research, finding suitable care providers and relieving the burden of organizational expenses.
4.2. Benefits for medical partners
Medical partners who participate in APST’s medical research and/or care management benefit as follows:
– Promotion of medical research projects (gaining knowledge; supporting medical innovation)
– Strengthening own competencies through statistics on medical research and care
4.3. Benefits for suppliers
For suppliers of medicines, there are considerable time and efficiency gains in data procurement. Furthermore, there are various advantages in quality management and the strengthening of differentiation features.
4.4. Overall social benefit
The overall perspective describes the benefits of medical research and care management that go beyond the perspective of a specific group of participants (patients, doctors, care providers). The focus is on supporting and relieving patients with serious and chronic illnesses through an innovative service architecture.
5. guaranteeing data protection and data security
The APVP internet platform is administered by APST, while patient-related data is stored in a protected database. APST ensures that data protection requirements are met. For this purpose, 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 medical 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 the use of the APVP internet platform.
6. provision and financing free of charge
The APVP services and software are provided free of charge for patients and their relatives. The APST services for patients are financed from the fees of the care partners and from other forms of revenue (third-party funding of the APST).
The services of APST are also made available to the medical partners free of charge, 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 medical research data (on the basis of informed consent), which is used scientifically and economically by APST (third-party funded APST projects). For care partners, the use of care management services and the use of the APVP software is subject to a fee. Overall, the financing of the AP concept follows the “shared value concept”, in which the revenues of APST (through fees from care partners and third-party funding) are used to create added value for society (free provision for patients).