Service description for patients
1. description of the concept
1.1. Principles
People with chronic illnesses can have high and complex needs for outpatient care, medication and nutrition. A critical aspect of outpatient treatment is the coordination of the necessary care and the coordination of the partners involved. The Outpatient Partner addresses these needs and embodies digitally supported care management. The AP concept (hereinafter “AP concept”) includes a combination of coordinative services with the digital management platform “APST care portal” (hereinafter “APVP”). Ambulanzpartner Soziotechnologie APST GmbH (hereinafter referred to as “APST”) offers care management services that serve to improve coordination, communication and networking between patients (and their relatives), doctors and medical assistants in practices, outpatient clinics and hospitals (“medical partners”) as well as providers of drug therapy (pharmacies, manufacturers of drugs and medical devices), nutritional therapy and providers of remedies and aids (“care partners”). The APVP Internet platform is the communication and management platform on which care coordination is digitally supported, linking an electronic care record with digital process control for the purpose of care management and care research. Coordinators implement care management for necessary medications, medical devices, aids and remedies as well as specialized care in personal, telephone or electronic contact with patients (and their relatives), medical partners (doctors, social services) and care providers. The care management offered by APST includes services that are not provided within standard care or are provided to a lesser extent. The standard care provided by doctors and other service providers remains unaffected by the AP concept. The determination of the need for care, including the medical indication for medication and other medical products as well as aids and remedies, is the unrestricted responsibility of the doctor. The assessment of the appropriateness and cost-effectiveness of care also remains the unchanged responsibility of the doctor and payer. The services and use of the APVP only come into effect once the care decisions have been finalized by the doctor in a doctor-patient contact. 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 care management at any time and without giving reasons.\
The AP concept is offered to patients under the following special conditions.\
a) For diseases with special conditions:
b) For a supply with special conditions:
The AP concept is offered for use in particular for patients with the following diagnoses and syndromes due to special medical conditions and care requirements:
1.2. Supply management
In the standard care of patients with chronic, serious or rare diseases, the doctor determines the need for aids and remedies, medication, nutritional therapy or other medical products as part of the treatment. The determination and discussion of the need for treatment takes place independently of the APST concept and the patient’s possible participation in APST care management. The doctor informs the patient about the option of participating in the AP concept if the patient can benefit from digitally supported care coordination. It is made clear that the doctor will not receive any remuneration or other benefits for this recommendation. Another reason for non-binding information about the possibility of participating in the AP concept is if the patient meets the criteria for participation in a care research study (see 1.3.). The designation by the doctor is one of several ways in which the patient can be informed about the AP concept. Other information channels include recommendations from self-help organizations and patient associations, testimonials in blogs and other social media, the APST website and publications about the AP concept in print and online media and scientific publications. If and insofar as requested by the patient, the APST provides services on behalf of patients that would otherwise have to be provided by the patient or relatives themselves but cannot be provided or cannot be provided adequately due to a lack of resources and skills (e.g. searching for suitable care providers; arranging appointments; providing documents, statements, etc.). In addition to care coordination, digital networking across professional groups (via the APVP internet portal) is a further service that has not yet been included in standard care; if the patient wishes to participate in the AP concept, the necessary documents are made available to the APST. On the basis of informed consent, the patient commissions APST to provide the entire care management or individual services. To this end, the patient or a legal representative signs a declaration of consent authorizing 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 file is created and the patient is contacted by a care coordinator from APST or a medical partner. The care process is described in detail in section 2. The order is placed with the care provider regardless of whether the selected care partner makes use of the APST services.
1.3. Health services research
The AP concept pursues a dual approach: data generated in the context of care management is used for a systematic analysis of care based on the informed consent of patients. This creates a “double effect”: the digitization of care data on the APVP directly serves the coordination of care and, at the same time, care research through the evaluation of “routine data” (data from standard care). All patients who make use of APST care management are also invited to take part in a registered study in which medical data on medication and nutritional care, the provision of aids and remedies and socio-medical data are scientifically evaluated and published for the purpose of care research. Consent for health services research in the AP concept is given on the basis of separate study information and a separate declaration of consent.
1.4. Principle of the open network
Voluntariness, optional use and the unconditional option to end participation are the basic principles of the AP concept. It is therefore possible to coordinate care within the AP concept, while other care is provided outside the AP concept, either in parallel or at a different time. Care partners can make use of the 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.
2. supply management
2.1. Provision of medical aids 2.1.1 Addressed needs for the provision of medical aids
For people with chronic neurological conditions, the focus is on aids for mobility, transfer and communication. Identifying a suitable care partner is particularly relevant for rare, severe and progressive diseases. In the case of rare and severe diseases, individual care concepts are necessary in the segments of orthotics, mobility, transfer and communication aids, which require a high level of professional and technical expertise from the care provider. In the case of progressive illnesses, it is advantageous for care providers to have detailed knowledge of the underlying clinical picture in order to anticipate the course of the illness and the expected increase in deficits and to incorporate this into the concept for the provision of assistive devices. The principle of anticipatory provision of assistive devices serves to avoid incorrect provision and requires the provider to have experience in the specific indication. Overall, from the patient’s perspective, there is a justified interest in receiving care from service providers who (in addition to their formal qualifications) have specific expertise in the underlying disease and assistive technology constellation to be treated. Identifying and contacting experts in the provision of assistive technology devices is advantageous in order to maximize experience, quality and efficiency in the treatment of assistive technology devices and to reduce the risk of incorrect treatment. The APST’s services initiate networking with specialized providers on behalf of the patient and support them in the further course of care.
2.1.2. Procedure for the provision of aids
The provision of medical aids is a complex process that involves considerable time, organizational and administrative effort. Fig. 1 shows the necessary chain of action between patient, provider and doctor to ensure that a suitable assistive device is submitted to the health insurance company for reimbursement. The structure of the process is not changed by APST’s care management and follows the formal requirements of healthcare provision. However, the APST’s service consists of taking over, coordinating and digitizing certain organizational steps in the communication between patient, provider and doctor on behalf of the patient and the provider. The coordinative service and the use of the APVP internet platform relieve the burden on patients and care partners.
Fig. 1: Procedure for the provision of aids: The provision of assistive devices follows a structured process that is realized in the following sub-steps. 1) the doctor makes an indication for an assistive device; 2) the patient commissions the coordinator to assist with the provision of assistive devices (request for provision); 3) the coordinator receives the request for provision; 4) the patient confirms the request for provision; 5) the coordinator identifies a suitable provider of assistive devices; 6) the provider receives and confirms the request for provision; 7) the provider visits the patient and draws up a proposal for provision; 8) the patient confirms the care proposal; 9) the provider sends the prescription proposal; 10) the coordinator sends the prescription request to the doctor; 11) the doctor checks the prescription request; 12) the doctor prepares and sends the prescription for the assistive technology device; 13) the coordinator receives and sends the prescription to the provider; 14) the provider receives the prescription; 15) the provider applies for the costs to be covered.
2.2. Provision of remedies
2.2.1. Addressed requirements for the provision of remedies
There is a high demand for specialized physiotherapy, occupational therapy and speech therapy for severe or rare diseases. Therapy practices that have special skills or care options for certain illnesses are of interest. Specialized therapy practices with qualifications and experience in treating the indications listed in 1.1. are of particular relevance. Special care conditions can also arise in the case of common illnesses (e.g. stroke) (physiotherapy after botulinum toxin treatment of spasticity; combination of therapeutic care with the provision of assistive devices). A frequent search criterion is therapy practices that can provide high-frequency therapy (4-5 times per week) in home visits. Patients with specific needs for the provision of therapeutic appliances (special form of therapy; high-frequency therapy, home therapy, specific interdisciplinary experience with accompanying pharmacotherapy, orthoses or palliative aids, etc.) ask the APST to find a suitable care partner. In the further course of treatment, the focus is on organizational support with the provision and sending of necessary reports and other documents as well as the coordination of therapy with other treatment providers (e.g. occupational therapy and speech therapy), aid providers (e.g. orthopaedic mechanical workshops) or care providers (coordination of nursing or therapeutic measures). In the case of severe and chronic illnesses, medical aid providers play a central role in the care concept. Particularly in the case of high-frequency therapeutic care (several times a week), the therapeutic care provider is the professional group that implements the medically indicated care concept in direct contact and with maximum intensity. Due to the direct interaction between patient and provider, detailed specialist knowledge, experience and psychosocial skills that go beyond formal qualifications are required, particularly in the case of progressive illnesses and palliative treatment goals. Against this background, there is a legitimate interest from the patient’s perspective in receiving care from a healthcare provider who has the therapeutic expertise, the necessary experience and the required psychosocial competence.
2.2.2. Procedure for the provision of remedies
The APST care management system helps patients to find and contact specialized physiotherapists, occupational therapists and speech therapists. In the case of long-term or permanent therapy, it is necessary to provide the necessary prescriptions, which in standard care are communicated by the therapist to the patient, who in turn communicates the need for the prescription to the prescribing doctor. Once the indication has been checked, the patient receives the follow-up prescription and submits this document to the provider. This administrative process (especially for patients with mobility and communication barriers and in the case of parallel use of different remedies) is associated with high costs for the patient. Coordinators of theAPST relieve this organizational process — on behalf of the patient – through document management and the use of the APVP Internet platform. The upper part of Fig. 2 shows the necessary organizational steps in standard care. The lower part of the schematic diagram shows those sections of the care process in which patients and healthcare providers receive coordinative support.
Fig. 2: Procedure for the provision of therapeutic products: The provision of remedies follows a structured process, which is realized in the following sub-steps. 1) the doctor provides the indication for the provision of remedies and issues the prescription; 2) the patient instructs the coordinator to assist with the provision of remedies (request for provision) and sends the prescription to the coordinator; 3) the coordinator receives the prescription for remedies; 4) the coordinator identifies a suitable therapist and submits a care request; 5) the therapist accepts the care request; 6) the coordinator proposes a therapist to the patient; the patient confirms the proposed therapist; 7) the therapist receives the care order; 8) the therapist receives the prescription; 9) the therapist treats the patient; 10) the patient requires further treatment after completion of the therapy and a prescription required for this; he instructs the therapist to formulate a prescription proposal; 11) the therapist sends a prescription proposal for further treatment; 12) the coordinator submits the prescription request to the doctor; 13) the doctor checks the prescription proposal, determines the indication for continued (or modified) treatment, prepares and sends the prescription; 14) the coordinator receives and sends the prescription; 15) the therapist takes over the patient’s further treatment.
2.3. Medication supply 2.3.1 Addressed needs of the medication supply
In the case of complex and rare diseases, there may be special requirements for the supply of medicines that relate to the following areas of pharmacists’ responsibilities:
2.3.1.1. Advice on medicines Providing advice on the effects and side effects and supporting the proper use of medicines is one of the pharmacist’s regular tasks. In the case of complex and rare diseases, however, it is advantageous if the pharmacist has special expertise in these diseases. In this way, empirical knowledge of dose-effect relationships and side effects can be incorporated into the pharmacist’s advice on the effects and risks of medicines and their appropriate use. There is a need for specialized advice in the event of an increased risk of adverse drug reactions and in the case of drug therapy in an area of application outside the indication or a changed type of application (off-label use). The AP concept coordinates the care of patients who have a special need for advice, in particular due to the following conditions of use:
In the case of complex and rare diseases, there may be special consultation circumstances and thus special communicative and psychosocial requirements for the pharmacist and other pharmacy staff as well as for the technical infrastructure of the pharmacy. The AP concept coordinates the care of patients who have a particular need for advice due to the following circumstances:
2.3.1.2. Production of recipes The preparation of formulations is one of the pharmacist’s regular tasks. There is a specialized need when rare formulations have to be developed, produced and stocked. In particular, the AP concept coordinates the care of patients who have a special need for the preparation and timely supply of prescriptions for the following groups of medicines:
2.3.1.3. Cooperation with care partners from other healthcare professions
Cooperation with other healthcare professionals is part of the pharmacist’s regular duties. In the case of complex, rare and chronic diseases, there is a particular need for cooperation in order to ensure advice on drug risks and the appropriate use of medication. The AP concept coordinates the care of patients who require special coordination between the pharmacist and care partners:
2.3.2. Procedure for supplying medication The APST care management system supports patients in finding and contacting specialized pharmacists. In the case of long-term or permanent medication treatment, patients are relieved of organizational tasks by APST coordinators and by using the APVP internet platform.Fig. 1 shows the organizational process of medication supply and those stages in the supply process where patients or pharmacists receive coordinative support.
Fig. 3 Medication supply process: The supply of medication follows a structured process, which is realized in the following sub-steps. 1) the doctor provides the indication for the medication, writes the prescription and hands the prescription to the patient; 2) the patient instructs the coordinator to search for a suitable pharmacist (supply request); the coordinator identifies a suitable pharmacist and informs the patient of this; 3) the patient sends the prescription to the pharmacist; 4) the pharmacist receives the supply-relevant data via the outpatient partner supply portal; 5) the pharmacist contacts, advises and supplies the patient; 6) for the follow-up medication, the patient asks the pharmacist for a suggestion regarding the medication requirement; 7) the pharmacist sends his suggestion regarding the medication requirement to the doctor via the outpatient partner care portal; 8) the doctor provides the indication for the continued (or changed) medication supply and sends the prescription to the patient; 9) the patient sends the prescription to the pharmacist (continuation of the process)
2.4. Guaranteeing freedom of choice
The patient’s participation in APST care management requires the patient’s informed and documented consent. This requires the acknowledgement, consent or selection of options and signing of the following documents:
When participating in care management, the patient has comprehensive freedom of choice: they can fill their prescription themselves or choose a specific provider to be commissioned by the care coordinator or instruct the APST coordinator to identify a suitable provider and coordinate the care. In the document “Declaration on free choice of pharmacy”, the patient confirms that they have been informed about the right to choose a pharmacist and about these options and that they have decided in favor of one of these options by signing it. Within the framework of care coordination, it is possible under the legal requirements to deliver medication by courier or by mail order to the patient’s home of origin or to a doctor’s practice where the medication is administered (e.g. injection or infusion therapy). For this purpose, the patient signs the “delivery order” document authorizing a pharmacy or a logistics company commissioned by the pharmacy to deliver the medication by courier or mail order.
3. description of the 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:
3.1. 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. Care coordination includes the following services:
3.2. Data management
Data management is a service provided by coordinators and data managers. It includes the collection of medical information and care data as well as its digitization and provision to patients, care partners and medical partners. Data management includes the following services:
3.3. 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:
3.4. Complaints management
Complaint management is a service provided by coordinators on behalf of patients and care partners. Complaints from patients and medical partners are received, systematically recorded, clarified, evaluated and communicated to the partners involved (patient, care partner and, if applicable, medical partner) via a telephone service as well as an e-mail and inbox. Complaints management includes the following services:
3.5. Patient reviews
Patients or persons authorized by them also have the opportunity to evaluate medical devices and medical services. Through the cooperation of the patient, an important contribution to the improvement of healthcare can be made or targeted suggestions for improvement can be made to optimize future medical devices, treatments and care processes. 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:
4. description of the Outpatient Partner Care Portal (APVP)
The APVP internet platform(https://www.ambulanzpartner.de) is the digital communication and management platform used to document and control all care management services. 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. Patients can make use of the care management services without using the APVP software or any other computer application themselves. 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 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.
4.1. 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.
4.1.2. Medical partners and supply partners
4.1.3. Coordinator role
4.1.4. Network manager, data manager and administrator roles
4.2. 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 provided
| Data category | Data fields |
| Contact date | – 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 a 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 guardian – General power of attorney – Insurance number |
| Cost unit | – Exemption from co-payment – Name of the health insurance company (selection menu) – Responsible branch of the health insurance company – Postal address of the health insurance company – Date on which the insurance card was read. |
| Demographic data | – Age – Gender |
| Diagnoses and classifications | – Main diagnosis – Secondary diagnoses – Classifications – Onset of illness (MM-YYYY) |
| Clinical features and symptoms | – Symptoms – symptom onset (MM-YYYY) – symptom severity – progression variants |
| Measurement parameters, biomarker findings, genotype (if applicable) | – Body Mass Index (BMI) – Slow Vital Capacity (SVC) – Peak Cough Flow (PCF) – Neurofilament light chain (NF-L) in cerebrospinal fluid (CSF) – Neurofilament light chain (NF-L) in serum – Other biomarkers related to the principal diagnosis – Genotype related to the principal diagnosis |
| Respiratory care (if applicable) | – Non-invasive ventilation therapy (start: MM-YYYYY) – Invasive ventilation therapy (start: MM-YYYYY) |
| Nutritional care (if applicable) | – Non-invasive nutrition therapy (start: MM-YYYYY) – Invasive nutrition therapy (start: MM-YYYYY) |
| Provision of aids | – 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 start of medication (if applicable) — Date of end of medication (if applicable) — Dosage regimen—Dose of the medication – Start date of the medication – End date of the medication (if applicable) – Dosage regimen – Area of application (indication of the medication) – Supply partner (pharmacy) – Prescriber of the medication – Contact details of the prescriber |
| 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 start of medication (if applicable) — Date of end of medication (if applicable) — Dosage regimen—Dose of the medication – Start date of the medication – End date of the medication (if applicable) – Dosage regimen – Area of application (indication of the medication) – Supply partner (pharmacy) – Prescriber of the medication – Contact details of the prescriber |
5. principle of multiple 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.
5.1. Benefits for patients
For patients and their relatives, the focus is on support in the search for suitable providers and relief in the organizational expenses involved in the long-term supply of medication. Patients and relatives who take part in care management benefit as follows, depending on the use of the APVP by the respective care partners:
5.2. Benefits for medical partners
Medical partners who participate in APST’s care management benefit as follows:
5.3. 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. The following benefits arise for suppliers who participate in supply management:
5.4. Overall social benefit The overall perspective describes the benefits of care management that go beyond the perspective of a specific group of participants (patients, doctors, providers). The focus is on the support and relief of patients with serious and chronic illnesses through an innovative service architecture as well as the efficiency gain of care processes through digitalization. From an overarching perspective, digitally supported care management generates the following benefits:
6. ensuring 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. 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 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. The 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 healthcare partners is a prerequisite for using the APVP internet platform.
7. provision and financing free of charge
The APVP’s services and software are provided free of charge for patients and their relatives, as charging fees is prohibited for psychosocial reasons. APST services for patients are financed from the fees charged by the care partners and from other forms of revenue (third-party funding of APST). APST services are also made available to 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 APST 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 APST (third-party funded APST projects). The use of care management services and the use of the APVP software is subject to a fee for care partners. Overall, the financing of the AP concept follows the “shared value concept”, in which the revenues of the APST (through fees from care partners and third-party funding) are used to create added value for society (free provision for patients).