Service description for the use of the APST care portal by international medical partners
Published on January 1, 2018
For reasons of better readability, the simultaneous use of masculine and feminine language forms has been dispensed with. All references to persons apply equally to both genders.
Table of contents
- Concept description
1.1. Principles
1.2. Medical research
1.3. Open platform principle - Description of services
2.1. Patient reviews
2.2. Care coordination
2.3. Data management
2.4. Document management
2.5. Complaint management - Description of the APST Care Portal (APCP)
3.1. User roles and permissions
3.2. Provided data - Principle of multi-party benefit
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
- Provision and financing free of charge
- Concept description
1.1. Principles
Ambulanzpartner Soziotechnologie APST GmbH (hereinafter referred to as “APST”) offers medical research services both within and outside Germany. Healthcare management services are only offered within Germany. The services are designed to improve research, coordination, communication, and networking between patients (and their relatives), doctors and medical assistants in practices, outpatient clinics, and hospitals, scientists (referred to as “medical partners”), as well as providers of drug therapy (pharmacies, manufacturers of drugs and medical devices), nutritional therapy, and providers of remedies and aids (referred to as “care partners”). The “APST care portal” (hereinafter “APCP”) internet platform is the communication and management platform that provides digital support for medical research and care coordination. It links an electronic care record with digital process control for the purposes of medical research and care management. The Ambulanzpartner concept (hereinafter referred to as “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 desire and voluntary participation. The patient has full participation rights at all times and will only receive support to the extent desired. The patient is entitled, informed, and able to terminate participation in medical research and APST care management at any time 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
Due to the special medical conditions and care requirements, the AP concept is offered for use in particular to 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 following stroke (severe or special course)
• Defect syndrome following traumatic brain injury (severe or special course)
• Dementia syndrome (severe or special 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 the APST. On the basis of informed consent, the patient authorizes the APST to use their data for medical research, care management, or individual services. To this end, the patient or a legal representative signs a declaration of consent authorizing medical research, care management by APST, and the digitization of personal data on the APVP internet platform. Once the necessary declarations have been provided, an electronic care file 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 consent from patients—for systematic analysis of care and disease progression. This creates a “double effect”: the digitization of care data on the APCP directly serves to coordinate 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 APST’s care management and medical research services are also invited to participate in a registry in which medical data on medication and nutrition, 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 based on separate study information and a declaration of consent.
1.3. Principle of an open network
Voluntary participation, optional use, and the unconditional option to terminate participation are fundamental principles of the AP concept. Participation is not an “either/or” decision. This means that care can be coordinated within the AP concept while, at the same time or at a different point in time, other care can be provided outside the AP concept. Care partners can use APST services or terminate their participation without any 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 facilitate communication and networking between patients, physicians, 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
s or persons authorized by them have the opportunity to evaluate their course of illness, medical devices, and medical services. Through the cooperation of s, an important contribution can be made to improving healthcare or, through targeted suggestions for improvement, optimizing future medical devices, treatments, and care processes. The assessment includes surveying patients via the APCP, the ALS and SMA app, by telephone, or by email.
The patient assessment includes the following services:
• Creation of interview documents and configuration of interview software
• Conducting telephone surveys, sending online assessments
• Evaluation of patient assessments
• Presentation of patient assessments on the APCP and other communication channels (newsletters, print media, publications)
2.2. Care coordination
Care coordination is a service provided by non-medical coordinators at APST. It involves organizational tasks related to the provision of aids and remedies, as well as medications and medical devices.
2.3. Data management
Data management is a service provided by coordinators and data managers. It involves collecting self-assessment data, medical information, and care data, as well as digitizing and making this data available to patients, care partners, and medical partners. Data management includes the following services:
• Digitization of master data, medical data, and care data in the APVP’s electronic care record
• Reading of doctor’s letters and other medical documents for the collection and digitization of diagnostic data in accordance with ICD-10
• Reading doctor’s letters and other medical documents for the collection and digitization of 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 comprises the following services:
• Collection and mailing of printed documents (e.g., doctor’s letters, therapy reports, medication plans, care requests, trial protocols)
• Scanning, indexing, uploading, and versioning documents (e.g., doctor’s letters, therapy reports, medication plans, care requests, trial protocols)
• Creating, circulating, and versioning document templates (e.g., medication plans, care requests, forms)
- Description of the Ambulance Partner Care Portal (APCP)
The APCP 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 controlled. It is the communication medium between professional coordinators, medical partners, and care partners for the purpose of conducting medical research and managing care. The use of this platform is not mandatory for patients and medical partners; it is optional and voluntary. Patients can use the medical research and care management services without using the APCP software or any other computer application themselves. Consequently, patients can participate in the AP concept even without technical knowledge or access to the internet. Patients and medical partners are given the option of obtaining their own access to the APCP internet portal. This access gives patients and medical partners the option to view the organizational and communication processes. Patient- and care-related data are recorded on the APCP, as shown in 4.2. Specific access permissions have been defined for accessing personal data, as described in 4.1.
3.1. User roles and permissions
A key feature of data protection is the restriction 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. Restrictions on data access have been specified for the following user groups.
3.1.1 Medical partners and care partners
• All data in the portal relating to patients for whom there is a research or care mandate (no data availability for patients for whom there is no mandate for action)
3.1.2 Coordinator role
• All data in the portal for those patients for whom there is a research and/or coordination order (no data availability for patients for whom there is no research and/or coordination order)
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 from patient evaluations (survey management) and participant groups (participant management)
3.2. Data provided
Extensive patient and care-related data is collected and stored on the APCP on the basis of the patient’s detailed consent in a systematic menu navigation via free text or selection lists. The data fields are to be understood as input options that are not collected for every patient and every care process.
| Data category | Data fields |
| Contact | • Main address • Additional addresses • Patient’s telephone numbers (lists) • Telephone numbers of relatives and other authorized persons (lists) • Type of residence (house, apartment; rented, owned) • Living space with number of rooms • Number of steps if there is a staircase • Floors • Presence of an elevator • Accessibility |
| Social profile | Marital status • Number of children • Place of residence or care (drop-down menu) • Occupation • Last job held • Care level • Long-term care insurance benefits • Living will • Legal guardianship • General power of attorney |
| Cost bearer | • Insurance number • Co-payment exemption • Name of health insurance provider (drop-down menu) • Responsible health insurance branch • Postal address of the health insurance company • Date on which the insurance card was scanned |
| Medical profile | • Main diagnosis according to ICD-10 (selection menu) • Secondary diagnoses according to ICD-10 (selection menu) • Ventilation care (selection menu) • Nutritional care (selection menu) • Contact details and provider profile of medical outpatient clinics, practices and clinics, nursing teams, social services, nursing consultations and other |
| Documents (scans of printed documents) | • Doctor’s letters • Declarations of consent • Care requests • Care trial reports • Medication plans • Therapy reports • Transfer forms • Health care proxy • Living will • Other documents |
| Supply of remedies | • Ongoing therapeutic processes (overview) • Completed therapeutic processes (overview) • Ticket number of the therapeutic product; date of supply request • Prescription outside the norm; therapy area (selection menu) • Indication code (selection menu) • Type of remedy (selection menu) • Prescription quantity (units) • Recommended frequency (selection menu) • Duration of therapy in minutes • Need for treatment during home visits • Therapy report • Key symptoms for the provision of remedies • Therapy goals for the provision of remedies • Date of issue • Date of planned start of treatment • Prescriber of the remedy • Prescriber’s contact details • Therapeutic product supply partner • Contact details of the supply partner • Date and content of the therapeutic product requirement • Date and content of the supply partner’s prescription request • Date and content of the prescription request to the physician • Date of receipt of the prescription by the care provider • Date of commencement of treatment • Date of completion of treatment • Number of treatment units provided per week • Date and reason for cancellation of treatment |
| Supply of medical aids | • Open medical aid processes (overview) • Completed medical aid processes (overview) • Product description; ticket number • Person who defined the need • Primary need for assistive device provision; assistive device group • Product description of the medical device • Specification of the medical device • Assistive device name; date of prescription • Supplier of the medical device; Manufacturer of the medical device • Prescriber of the medical device • Prescriber’s contact details • Date of supply requirement • Date of supply request • Date of initial contact between coordinator and patient • Date of care request • Date and content of 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 care partner • Prescription text for the medical aid, group, product, specification of the medical aid • Date of prescription request to doctor • Date of prescription issuance by physician • Date of receipt of prescription by the care provider • Date of cost coverage application by the care provider to the health insurance company • Date of cost coverage • 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 • Dosage of the medication • Date medication started • Date of end of medication (if applicable) • Dosage regimen • Area of application (indication of the medication) • Supply partner (pharmacy) • Prescriber of the medication • Prescriber’s contact details |
| 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 • Health-related quality of life questionnaire (EQ-5D-5L9) with 5 questions • Measure Yourself Medical Outcome Profile (MYMOP) • Net Promoter Score (NPS) with one question • Treatment Satisfaction Questionnaire for Medication (TSQM) with 9 questions |
- Principle of multilateral benefit
The AP concept is based on the fundamental principle of a multi-sided platform. Within the platform structure, various partners make different contributions to the platform and generate role-specific benefits.
4.1. Benefits for patients
For patients and their relatives, the main benefits are support in participating in medical research, finding suitable care providers, and reducing the organizational burden.
4.2. Benefits for medical partners
Medical partners who participate in APST’s medical research and/or care management enjoy the following benefits:
• Promotion of medical research projects (knowledge gain; support for medical innovation)
• Strengthening of own competencies through statistics on medical research and care
4.3. Benefits for providers
For drug suppliers, there are significant time and efficiency gains in data collection. There are also various advantages in quality management and the strengthening of differentiating features.
4.4. Benefits for society as a whole
The overall perspective describes the benefits of medical research and healthcare management that go beyond the perspective of a specific participant group (patients, physicians, healthcare providers). The focus is on supporting and relieving patients with serious and chronic illnesses through an innovative service architecture.
5. Free provision and financing
The services and software of APCP are provided free of charge to patients and their relatives. APST’s services are financed for patients from the fees paid by care partners and 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 consenting to the collection and use of medical research data (on the basis of informed consent), which is exploited scientifically and economically by APST (APST third-party funded projects). Healthcare partners are charged for the use of healthcare management services and the APCP software. Overall, the financing of the AP concept follows the “shared value concept,” in which the APST’s revenues (from fees paid by care partners and third-party funding) are used to create social added value (free provision for patients).
6. Ensuring data protection and data security
The APCP internet platform is administered by the APST, while patient-related data is stored in a secure database. The APST ensures that data protection requirements are met. To this end, there is a cooperation between the APST and Charité – Universitätsmedizin Berlin. Charité is responsible for hosting the personal data. The data is stored in Charité’s data security architecture. In stark contrast to any form of open internet application, the APCP is strictly confidential and only accessible to authorized users. The patient has expressly consented to the use of their data for the purpose of outpatient care. The APST works exclusively with medical partners and care partners who have agreed to the use of patient data for medical research purposes and to strict compliance with data protection regulations. 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 APCP internet platform.