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Description of services for patients

1. Concept description

1.1. Principles

People with chronic illnesses may have high and complex needs when it comes to outpatient medical aids, medication and nutrition. One critical aspect of outpatient treatment is the coordination of the necessary care and the partners involved. Ambulanzpartner addresses these needs and embodies digitally supported care management. The APST concept (hereinafter referred to as the “AP Concept”) combines coordinative services with the digital management platform “APST Care Portal” (hereinafter referred to as the “APST Care Portal”).

The Ambulanzpartner Sociotechnology APST GmbH (hereafter “APST”) offers care management services designed to improve coordination, communication and networking between patients (and their relatives), doctors and medical assistants in practices, outpatient clinics and hospitals (referred to as “medical partners”), as well as providers of drug therapy (pharmacies, manufacturers of drugs and medical devices), nutritional therapy and therapeutic aids and appliances (referred to as “care partners”). The APVP internet platform is the communication and management platform that provides digital support for care coordination. It links an electronic care record with digital process control for the purposes of care management and care research.

In personal, telephone or electronic contact with patients (and their relatives), medical partners (doctors, social services) and suppliers, coordinators implement care management for necessary medications, medical products, aids and remedies, as well as specialized care. The care management offered by the APST includes services that are not provided or are provided to a limited extent within standard care. The AP concept does not affect standard care by doctors and other service providers. The doctor has full responsibility for determining the need for care, including the medical indication for medication and other medical devices as well as aids and remedies. The responsibility for checking the appropriateness and cost-effectiveness of treatment also remains with the doctor and the funding agency. The services and use of the APVP only come into play when the doctor has made the treatment decisions in a doctor-patient consultation. The offer to participate in the AP concept is based on the patient's wish and voluntary participation. He has full rights of participation at all times and is only given the support he wants. The patient is entitled, informed and able to end his participation in the APST care management scheme at any time and without stating reasons.

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

a) for illnesses with special conditions:

  • serious illness
  • complex chronic illness
  • rare illness

b) for care with special conditions:

  • high organizational expenses in the care of patients and medical partners
  • high specialization requirement to ensure the quality of care
  • high need for coordination between various medical partners and providers
  • high need for health services research

The AP concept is offered for use due to the special medical conditions and care needs, particularly 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 unusual progression)
  • Multiple sclerosis (severe or unusual progression)
  • Deficiency syndrome after stroke (severe or unusual progression)
  • Defect syndrome after traumatic brain injury (severe or special course)
  • Demential syndrome (severe or special course)
  • Tetraparesis
  • Hemiparesis
  • Spastic syndrome
  • Cachexia syndrome
  • Dysphagia syndrome

1.2. Care management

In the regular care of patients with chronic, severe or rare diseases, the doctor determines a need for care in the form of therapeutic aids and devices, drugs, nutritional therapy or other medical devices as part of their treatment. Determining and discussing the need for treatment is done independently of the AP concept and of a patient's possible participation in the care management of the APST. 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 does not receive any remuneration or other advantages for this recommendation. Another reason for non-binding information about the possibility to participate in the AP concept is when the patient meets the criteria for participating in a study in health services research (see 1.3.). The doctor's recommendation is one of several ways in which the patient can become aware of the AP concept. Other ways of getting information include recommendations by self-help organizations and patient associations, experience reports 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 when requested by the patient, the APST takes on services on behalf of patients that would otherwise have to be provided by the patients or their relatives themselves, but cannot be provided or cannot be provided adequately due to a lack of resources and expertise (e.g. finding suitable providers; making appointments; providing documents, statements, etc.). In addition to care coordination, interprofessional digital networking (via the APVP internet portal) is a further service that is not yet included in standard care.

If a patient wants to participate in the AP concept, the necessary documents are provided by the APST. On the basis of informed consent, the patient commissions the APST to provide the entire care management or individual services. For this purpose, the patient or a legal representative signs a declaration of consent authorizing the APST to manage care and to digitize personal data on the APVP internet platform. Once the necessary declarations have been submitted, an electronic care record is set up and the patient is contacted by a care coordinator from the APST or a medical partner. The care process is described in detail in Section 2. The care provider is awarded the contract regardless of whether the selected care partner uses the services of the APST.

1.3. Health services research

In the AP concept, a dual approach is pursued: data generated in the context of care management are used – on the basis of the informed consent of the patients – for a systematic analysis of care. This has a “double effect”: the digitization of care data in the APVP directly serves the coordination of care and, at the same time, health services research through the evaluation of “routine data” (data from standard care). All patients who make use of the APST's care management are also invited to take part in a registry study in which medical data from the provision of medication and nutrition, the provision of aids and remedies, and socio-medical data are scientifically evaluated and published for the purpose of care research. Consent to the care research in the AP concept is given on the basis of separate study information and a separate declaration of consent.

1.4 Principle of an open network

The basic principles of the AP concept are voluntariness, optional use and the unconditional possibility to stop participation. This makes it possible to coordinate treatments within the AP concept while other treatments are being provided outside of the AP concept at the same time, in parallel or at a different point in time. Care partners can utilize the services of the APST or terminate their participation without formal barriers. The totality of participating patients, care partners, medical partners and coordinators is referred to as the care network. Participation of patients, care partners and medical partners in the APST concept is dynamic and has the character of an open platform

2. Care management

2.1 Provision of assistive devices

2.1.1 Provision of assistive devices

For people with chronic neurological conditions, the focus is on aids for mobility, transfer and communication. The identification of 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 on the part of the care provider. In the case of progressive diseases, it is advantageous for the supplier to have detailed knowledge of the underlying clinical picture in order to anticipate the course of the disease and the expected increase in deficits and to include this in the concept for the provision of medical aids. The principle of anticipatory provision of therapeutic appliances is intended to avoid misuse and requires the providers to have experience and knowledge of the specific indication. Overall, from the patient's perspective, there is a justified interest in receiving care from service providers who (beyond formal qualifications) have specific expertise in the underlying disease and the situation regarding therapeutic appliance provision. Identifying and contacting experts in the provision of therapeutic appliances is beneficial to enable the highest level of experiential knowledge, quality and efficiency in the treatment with therapeutic appliances and to reduce the risk of misuse. The services of the APST initiate networking with specialized providers on behalf of the patient and supports this in the further course of treatment..

2.1.2. The process of assistive devices provision

The provision of medical aids is a complex process involving a considerable amount of time, organization and administration. Fig. 1 shows the necessary chain of action between patient, provider and doctor to ensure that a suitable medical aid is submitted to the health insurance company for cost coverage. The APST's care management does not change the structure of the process, which follows the formal requirements of health care provision. However, the APST 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 internet platform APVP help to relieve the burden on patients and care partners.

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Fig. 1. Process of medical aid provision: The provision of medical aids follows a structured process that is realized in the following sub-steps. 1) the doctor provides an indication for a medical aid; 2) the patient commissions the coordinator for assistance in the provision of therapeutic appliances (care request); 3) the coordinator receives the care request; 4) the patient confirms the care request; 5) the coordinator identifies a suitable therapeutic appliance provider; 6) the provider receives and confirms the care request; 7) the provider visits the patient and draws up a care proposal; 8) the patient confirms the care proposal; 9 ) the provider sends the prescription proposal; 10) the coordinator sends the prescription request to the physician; 11) the physician reviews the prescription request; 12) the physician creates and sends the medical-aid prescription; 13) the coordinator receives and sends the prescription to the provider; 14) the provider receives the prescription; 15) the provider requests requests coverage.

2.2 Provision of therapies

2.2.1 Addressed needs of the therapeutic treatment

For severe or rare illnesses, there is a high demand for specialized physiotherapy, occupational therapy and speech therapy. Therapy practices that demonstrate special skills or care options for certain illnesses are of interest. Specialized therapy practices with qualifications and experience in the care of the indications mentioned in 1.1. are particularly relevant. Even with common illnesses (

e.g. stroke) may give rise to special care conditions (physiotherapy after botulinum toxin treatment of spasticity; combination of therapeutic appliance care with provision of medical aids). A common search criterion is therapy practices that can provide high-frequency therapy (4-5 times per week) in the form of 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 aids; palliative care, etc.) commission the APST to find a suitable care partner. In the further course of treatment, the focus is on organizational support in the provision and sending of necessary reports and other documents, as well as the coordination of therapy with other providers of therapeutic products (e.g. occupational therapy and speech therapy), providers of therapeutic aids (e.g. orthopaedic mechanical workshops) or care providers (coordination of care or therapeutic measures). In the case of severe and chronic illnesses, the providers of therapeutic products play a central role in the care concept. Particularly in the case of high-frequency therapeutic product care (several times a week), the therapeutic product provider is the professional group that implements the medically indicated care concept in direct contact and with the highest intensity. Due to the direct interaction between patient and provider, detailed technical knowledge, experiential knowledge and psychosocial skills that go beyond formal qualifications are particularly necessary for progressive illnesses and palliative treatment goals. Against this background, there is a legitimate interest from the patient's perspective in receiving care from a provider of therapeutic products who has the therapeutic expertise, the necessary experiential knowledge and the required psychosocial skills.

2.2.2 Ablauf der Heilmittelversorgung

The APST's care management team helps patients to find and contact specialized physiotherapists, occupational therapists and speech therapists. For long-term or ongoing therapy, it is necessary to provide the necessary prescriptions, which in the case of standard care are communicated by the therapist to the patient, who in turn communicates the need for a prescription to the prescribing doctor. After the indication has been checked, the patient receives the follow-up prescription and delivers this document to the care provider. This administrative process is associated with a high level of effort for the patient (especially for patients with mobility and communication barriers and when several therapeutic products are used in parallel). APST coordinators 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 representation shows those sections in the care process in which patients and providers of therapeutic products receive coordinative support.

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Fig. 2. Process of therapies provision: Therapies are provided in a structured process that is realized in the following sub-steps. 1) the doctor establishes the indication for the provision of therapeutic products and writes the prescription; 2) the patient requests the coordinator to assist with the provision of therapeutic products (care request) and sends the prescription for therapeutic products to the coordinator; 3) the coordinator receives the prescription for therapeutic products; 4) the coordinator identifies a suitable therapist and submits a care request; 5) the therapist therapist accepts the care request; 6) the coordinator suggests a therapist to the patient; the patient confirms the suggested therapist; 7) the therapist receives the care order; 8) the therapist receives the prescription; 9) the therapist treats the patient; 10) after completion of the therapy, the patient requires further treatment and a prescription for this; he commissions the therapist to formulate a prescription proposal; 11) the therapist sends a prescription proposal for further treatment;

12) the coordinator sends the prescription request to the doctor; 13) the doctor checks the prescription request, determines the indication for continued (or modified) therapeutic appliance care, creates and sends the therapeutic appliance prescription; 14) the coordinator receives and sends the prescription; 15) the therapist takes over further treatment of the patient.

2.3 Provision of medication

2.3.1 Addressed needs of the medication supply

The treatment of complex and rare diseases may involve special requirements for the provision of medication, which relate to the following areas of responsibility for pharmacists:

  • Advice on medicinal products
  • Preparation of formulations
  • Collaboration with supply partners from other health care professions

2.3.1.1 Advice on medicinal products

Advising on the effects and side effects of medicinal products and supporting their proper use is one of the regular tasks of pharmacists. However, in the case of complex and rare diseases, it is advantageous if the pharmacist has special expertise in the diseases in question. In this way, knowledge gained from experience regarding dose-response relationships and side effects can be incorporated into the pharmacist's advice on

 the effects and risks of drugs and their proper use. There is a specialized need for advice in the case of an increased risk of adverse drug reactions and in the case of drug therapy in an indication-unrelated area of application or a modified method of application (off-label use). Furthermore, a specialized need for advice may arise if special conditions for the use of drugs are present. The AP concept coordinates the care of patients who have a special need for advice, particularly with regard to the following conditions of use:

  • Dysphagia (swallowing disorder)
  • Sialorrhea (uncontrolled salivation)
  • Percutaneous endoscopic gastrostomy (artificial feeding via tube)

 For complex and rare diseases, special circumstances may arise during the consultation, resulting in special communicative and psychosocial demands on the pharmacist and other pharmacy staff, as well as on 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:

  • restriction or loss of speech production by the patient during the consultation
  • loss of telephone and necessary use of digital media during the consultation and in the further communication process
  • locked-in syndrome (loss of mobility and communication with retained intellectual functions)

2.3.1.2  Preparation of formulations

The preparation of formulations is one of the regular tasks of a pharmacist. A specialized need arises when rare formulations have to be developed, manufactured and stocked. In the AP concept, the supply of patients is coordinated in particular, for whom there is a special need for the preparation and timely delivery of formulations for the following groups of drugs:

  • Anticholinergics for the treatment of sialorrhea
  • Medications containing cannabis for the treatment of cramps, spasticity and fasciculations
  • Spasmolytics containing 4-aminopyridine for the treatment of spasticity
  • Medications containing dextromethorphan for the treatment of motor disinhibition

2.3.1.3 Collaboration with care partners in other healthcare professions

Cooperation with members of other health care professions is one of the regular tasks of a pharmacist. In the case of complex, rare and chronic illnesses, there is a particular need for collaboration in order to ensure advice on drug risks and the appropriate use of medications. The AP concept coordinates the care of patients for whom there is a particular need for pharmacists to coordinate with care partners:

  • Providers of PEG tubes: The administration of medication via a PEG tube is an interdisciplinary task and requires special expertise from all parties involved, because medical, nursing and pharmaceutical aspects must be taken into account. Patient-specific data collection, an assessment by the pharmacist of the suitability of the medication for administration via the PEG tube, and a final check and prescription by the doctor are optimal. Targeted advice from pharmacists to nursing and nutrition providers ensures proper handling of PEG tubes and drug safety. The harmful effects of drugs on tubes can be prevented.
  • Therapy providers: Information about salivation-modified drugs is important for the success of speech therapy. At the same time, information from speech therapists about sialorrhea is incorporated into the pharmacist's advice on the proper use of oral medications. For physiotherapists and occupational therapists, knowledge about sedative, psychotropic or spasmolytic medications is relevant for therapy planning and ensuring therapeutic treatment success. Conversely, information from physiotherapists and occupational therapists can be important for pharmacists when advising on effects (e.g. improvement of gait disorders with antispasmodic medications) and risks (e.g. risk of falling with antispasmodic medications).
  • Providers of assistive technology devices: Knowledge of sedative, psychotropic or antispasmodic medications is relevant for providers of mobility, transfer and communication aids when testing and selecting assistive technology devices, as well as for avoiding misuse.

2.3.2 Medication supply process

The APST's care management provides support for patients to find and contact specialized pharmacists. For long-term or permanent medication treatment, patients are relieved of organizational tasks by APST coordinators and by using the APVP internet platform. Figure 1 shows the organizational process of medication provision and those sections in the provision process in which patients or pharmacists receive coordinative support.

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Fig. 3. Process of medication provision: The provision of medication follows a structured process that is realized in the following sub-steps. 1) the doctor provides the indication for the medication, creates the prescription and hands it over to the patient; 2) the patient commissions the coordinator to find a suitable pharmacist (care request); the coordinator identifies a suitable pharmacist and informs the patient; 3) the patient sends the prescription to the pharmacist; 4) the pharmacist receives the care-related data via the APST care portal; 5) the pharmacist contacts, advises and supplies the patient; 6) for the follow-up medication, the patient asks the pharmacist to suggest what medication is needed; 7) the pharmacist sends his suggestion regarding the medication requirement to the doctor via the APST care portal; 8) the doctor provides the indication for the continued ( or modified) medication supply and sends the prescription to the patient; 9) the patient sends the prescription to the pharmacist (continuation of the process)

2.4 guaranteed freedom of choice

Participation of patients in the care management of APST requires informed and documented consent. This requires acknowledgement, consent or selection of options and signature on the following documents:

  • General Terms and Conditions for Patients (AGB)
  • Data protection declaration for care management and care research by Ambulanzpartner Sociotechnology APST GmbH and the use of the APST care portal
  • Consent form for participation in care management and care research by Ambulanzpartner Soziotechnologie APST GmbH and for use of the APST care portal
  • Declaration of free choice of pharmacy (if medication supply desired)
  • Supply contract for pharmacies (if applicable)
  • Release from confidentiality for pharmacies (if applicable)

When participating in care management, the patient has comprehensive freedom of choice: He can either fill his prescription himself or personally appoint a specific care provider to be contracted by the care coordinator or to commission the APST coordinator to identify a suitable care provider and coordinate care. In the document “Declaration on the Free Choice of Pharmacy”, the patient confirms that he has been informed about the right to choose a pharmacist freely and about these options and that he has decided on one of the options mentioned with his signature. As part of the care coordination, there is the option, under the legal conditions, of having medication delivered by courier or by mail order to the patient's home or to a doctor's office where the medication is administered (e.g. injection or infusion therapy). For this purpose, the patient signs the “delivery order” document, which authorizes a pharmacy or a third party commissioned by the pharmacy

3. Description of services

The services are designed to facilitate communication and networking between patients, doctors and care partners and can be used together or in individual components. The modular AP service architecture consists of the following components:

3.1 Care coordination

Care coordination is a service provided by non-physician coordinators at APST. It includes organizational tasks related to the provision of therapeutic appliances, remedies, medications and medical devices. Care coordination includes the following services:

  • Receiving care requests by email and fax, as well as by post or online
  • Digital recording of the care request
  • Establishing contact with the patient, relatives or legal representatives by telephone to confirm and specify the care request
  • Identifying a suitable provider on behalf of the patient
  • Sending a care request to a suitable provider on behalf of the patient
  • Providing a telephone service for patients, medical partners and care partners
  • Monitoring and reminder service for unprocessed care requests to care partners

3.2. Data management

Data management is a service provided by coordinators and data managers. It includes obtaining medical information and care data, digitizing it, and making it available to patients, care partners, and medical partners. Data management includes the following services:

  • Contacting patients, relatives or legal representatives by telephone to collect master data, medical data and care data
  • Digitization of master data, medical data and care data in the electronic care record of the APVP
  • Reading of doctor's letters and other medical documents for the collection and digitization of diagnostic data according to ICD-10
  • Reading of doctor's letters and other medical documents for the collection and digitization of care data

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:

  • Collection and mailing of printed documents (e.g. doctor's letters, therapy reports, medication plans, care requests, testing protocols)
  • Scanning, indexing, uploading and versioning of documents (e.g. doctor's letters, therapy reports, medication plans, care requests, testing protocols)
  • Creating, circulating and versioning document templates (e.g. medication plans, care requests, forms)

3.4 Complaint Management

Complaint management is a service provided by coordinators on behalf of patients and care partners. Complaints from patients and medical partners are received via a telephone service and an e-mail and postal inbox, systematically recorded, clarified, evaluated and communicated to the partners involved (patient, care partner and, if applicable, medical partner). Complaint management includes the following services:

  • Provision and evaluation of complaint forms as well as the acceptance of complaints by telephone, provided that no medical or pharmaceutical questions are involved.
  • Processing and communication of criticized care processes to patients, doctors and care providers, provided that no medical or pharmaceutical questions are involved.

3.5 Patient assessments

Patients or persons authorized by them also have the opportunity to evaluate medical devices and medical services. The patient's cooperation can make an important contribution to improving health care or, through targeted suggestions for improvement, optimizing future medical devices, treatments and care processes. Patient assessments are conducted by trained personnel. The assessment includes surveying 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 delivery)
  • Conducting telephone interviews, direct interviews, sending online assessments
  • Evaluation of patient assessments
  • Presentation of patient assessments on the APVP and through other communication channels (newsletter; print media, publications)

4. Description of the APST Care Portal

The APST Internet platform (https://www.ambulanzpartner.de) is a 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 to manage the care of therapeutic appliances and remedies or the provision of medication and nutrition. The use of this platform for patients and medical partners is not required; it is optional and voluntary. Patients can take advantage of the services of care management without using the APVP software or any other computer application themselves. Consequently, patients can participate in the AP concept without technical knowledge and without access to the Internet. Patients and medical partners are given the option of accessing the APVP Internet portal themselves. With this access, patients and medical partners have the option of viewing the organizational and communication processes between the coordinators and care partners. Patient-related and care-related data are recorded on the APVP and are shown in 4.2. Specific access rights have been defined for access to personal data and these are described in 4.1.

4.1 User roles and authorizations

A central feature of data protection is the restriction of access rights to only those data that are necessary for the user role. Thus, not every user of the AP portal can view all the data stored there. The restriction of data access has been specified for the following user groups.

4.1.2 Medical partners and care partners

All data in the portal of those patients for whom a treatment or care contract exists (no data availability for patients for whom no action contract exists)

4.1.3 Coordinator role

All data on the portal for those patients for whom a coordination order exists (no data available for patients for whom no coordination order exists)

4.1.4. Network managers, data managers and administrator role

  • Complete set of data on all patient- and care-related data
  • Complete set of data on all medical partners and care partners
  • Complete data on patient ratings (survey management) and participant groups (participant management)

4.2. Provided data

Comprehensive patient and care-related data are recorded and stored on the AP Internet portal in a systematic menu-driven process using free text or drop-down lists, based on the patient's detailed consent. The data fields are to be understood as input options that are not recorded for every patient and every care process.

Contact Details

  • Main address
  • Subsidiary address(es)
  • Patient’s telephone number (lists)
  • Telephone numbers for relatives and other authorized persons (lists)

Social Profile

  • Advance Health Care Directive
  • Legal guardianship

Payer/Health Insurance Company

  • Insurance number
  • Copayment exemption
  • Name of health insurance company (select from menu)
  • Competent department at health insurance company
  • Health insurance company’s postal address
  • Date of swiping the health insurance card in the card reader

Medical Profile

  • Contact details and profile for medical outpatient departments, doctor’s surgeries/offices and clinics, care teams, social services branch, nursing care advisory services and sundry medical institutions involved in the patient’s care
  • Contact details and profile for providers of therapeutics and assistive technology devices and pharmacies

Documents (Scans of Printouts)

  • Doctor’s letters
  • Patient Information and Consent/sundry assent forms
  • Care provision requests
  • Test reports of care provisions
  • Medication schedules
  • Therapy reports
  • Transition forms
  • Health care proxy
  • Advance Health Care Directive
  • Sundry documents

Provision of Therapeutics

  • Prescriber of therapeutics
  • Prescriber‘s contact details
  • Care partner for therapeutics
  • Care partner’s contact details

Provision of Assistive Technology Devices (ATD)

  • Person who defined the need
  • Name of provider of ATD; name of ATD manufacturer
  • Prescriber of ATD
  • Prescriber’s contact details

Medication

  • Care partner (pharmacy)
  • Prescriber of medication
  • Prescriber’s contact details

Domestic Situation

  • Type of abode (house, flat; for rent; own property)
  • Living space and number of rooms
  • Number of steps of stairs/stairwell (if any)
  • Floor/story
  • Availability of a lift
  • Accessibility

Social Profile

  • Marital status
  • Number of children
  • Place of residence or nursing care facility (select from menu)
  • Profession
  • Profession last pursued
  • Nursing care level/degree
  • Nursing care insurance services

Payer/Health Insurance Company

  • Name of health insurance company (select from menu)

Medical Profile

  • Main diagnosis according to ICD-10 (select from menu)
  • Subsidiary diagnosis according to ICD-10 (select from menu)
  • Ventilation therapy (select from menu)
  • Nutrition therapy (select from menu)
  • Contact details and profile for medical outpatient departments, doctor’s surgeries/offices and clinics, care teams, social services branch, nursing care advisory services and sundry medical institutions involved in the patient’s care
  • Contact details and profile for providers of therapeutics and assistive technology devices and pharmacies

Scan of Print Documents

none

Provision of Therapeutics

  • Current therapeutics processes (overview)
  • Therapeutics processes completed (overview)
  • Ticket number for therapeutics; date of filing the care provision request
  • Prescription outside standard care; field of therapy (select from menu)
  • ICD Diagnosis Code (select from menu)
  • Type of therapeutic (select from menu)
  • Quantity prescribed (units)
  • Frequency recommendation (select from menu)
  • Duration of therapy session in minutes
  • Necessity of home visits for therapy
  • Therapy report
  • Cardinal symptoms indicating the provision of therapeutics
  • Therapy goals for the provision of therapeutics
  • Date of issue
  • Envisaged commencement date of therapy
  • Prescriber of therapeutics
  • Prescriber‘s contact details
  • Care partner for therapeutics
  • Care partner’s contact details
  • Date and content of therapeutics need
  • Date and content of prescription request by the provider
  • Date and content of prescription request submitted to the doctor
  • Date of issue of prescription by the doctor
  • Date of receipt of prescription at provider’s office
  • Commencement date of therapy
  • Completion date of therapy
  • Number of weekly therapy units delivered
  • Date and reason for cancellation of therapy

Provision of Assistive Technology Devices (ATD)

  • Pending ATD provision processes (overview)
  • Completed ATD provision processes (overview)
  • Product description; ticket number
  • Person who defined the need
  • Main need for provision of assistive technology devices; ATD group
  • ATD product description
  • ATD specification
  • Name of ATD; date of prescription
  • Name of provider of ATD; name of ATD manufacturer
  • Prescriber of ATD
  • Prescriber’s contact details
  • Date of care provision need
  • Date of care provision request
  • Date of first contact between coordinator and patient
  • Date of care provision request
  • Date and content of first contact between patient and provider
  • Date and content of the provider’s consultation with the patient and trial period with the patient
  • Date of prescription request by the provider
  • Wording on prescription for the ATD, group, ATD product specification
  • Date of submission of prescription request to the doctor
  • Date of issue of prescription by the doctor
  • Date of receipt of prescription at the provider’s office
  • Date of submission of application for cost absorption to the health insurance company by the provider
  • Date of cost absorption
  • Date of rejection (if any)
  • Date of delivery (if any)

Medication

  • Medication discontinued (overview)
  • Current medication (overview)
  • Medicine ticket number
  • Central pharmaceutical number for medicine (if any)
  • Brand name
  • List of excipients and constituents
  • Qualitative and quantitative composition
  • Date of starting medicine intake
  • Date of discontinuing medicine intake (if any)
  • Dosage regimen
  • Therapeutic indication
  • Name and address of pharmacy
  • Prescriber of medication
  • Prescriber’s contact details

Clinical Scales

  • Amyotrophic Lateral Sclerosis Functional Rating Scale- revised (ALSFRS-r), 12 items
  • Amyotrophic Lateral Sclerosis Functional Rating Scale extended (ALSFRS-ex), 15 items
  • Functional Ambulation Categories, one item
  • Questionnaire on Health-Related Quality of Life (EQ-5D-5L9), 5 items
  • Measure Yourself Medical Outcome Profile (MYMOP)
  • Net Promoter Score (NPS), one item
  • Treatment Satisfaction Questionnaire for Medication (TSQM), 9 items

Applications

  • Disease progression rate in ALS and SMS

5. Multi-sided utility principle

The AP concept is based on the fundamental principle of a multi-sided platform. In the platform structure, various partners provide 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 finding suitable providers and relief in the organizational efforts involved in the long-term supply of medication. For patients and relatives who participate in care management, the following benefits arise, depending on the use of the APVP by the respective care partners:

  • Support in the search for specialized and suitable providers
  • Relief through a point of contact for all care issues
  • Relief through organizational and administrative support in the provision, dispatch and storage of necessary statements, reports and other documents
  • Relief through a point of contact for complaints in the care (complaint management of the coordinators)
  • Strengthening autonomy through the electronic health record (EHR), including a medication plan on the APVP (“empowerment”)
  • Strengthening of autonomy through the display of the status of the provision of therapeutic appliances (“Is the therapeutic appliance in the approval process?”) on the APVP (“care tracking”)
  • Strengthening of the active patient role by inviting patients to evaluate medications, therapeutic appliances, medical devices, medical services and care providers

5.2 Benefits for medical partners

The following benefits arise for medical partners participating in the APST care management program:

  • Quality gain through transfer option to specialized non-medical care for complex, rare and chronic diseases (based on documented patient wishes)
  • Strengthening of own competencies through patient feedback on care (patient evaluation)
  • Strengthening of own competencies by receiving statistics on initiated care per month by email (initiated and delivered care)
  • Promotion of care research projects (knowledge gain; support for care innovation)

5.3 Benefits for providers

Providers of pharmaceutical care benefit from significant time and efficiency gains in the area of data collection. Furthermore, there are various advantages in quality management and the strengthening of differentiating features. The following benefits arise for providers participating in care management:

· Time and efficiency gains as well as quality improvement in care through structured information on diagnoses, specific care objectives and medical indications for care

· Time and efficiency gains in the provision of care through the digital provision of patient and care-relevant data, including logistics data

· Quality improvement in care through the digital provision of patient and care-relevant data on special application conditions

· Quality improvement in care through digital provision of patient- and care-relevant data on special circumstances

· Time and efficiency gains as well as quality improvement through digital support for the care provider's collaboration with members of other healthcare professions

· Quality control through structured patient assessments (satisfaction surveys on the care provider's services; benchmarking with other care providers)

Risk reduction of uneconomical misuse (through insight into existing and planned care for the same patient)

Strengthening of the provider profile and one's own specialization (through patient evaluations and numerical display of previous care on the APVP)

Participation in care research projects (reputation gain; optimization of care processes)

5.4 Societal benefits

The overall perspective describes the benefits of care management that go beyond the perspective of a specific participant group (patients, physicians, providers). The focus is on supporting and relieving the burden on patients with severe and chronic illnesses by means of an innovative service architecture, as well as on the efficiency gains in care processes through digitization. From a higher-level perspective, digitally supported care management generates the following benefits:

  • Relief for patients and their relatives with complex, rare and chronic illnesses
  • Strengthening of patient empowerment through patient assessments and coordinative services on behalf of the patient
  • Strengthening of specialization and differentiation processes in non-medical service provision (neurological specialized or sub-specialized therapy centers, medical supply stores and pharmacies)
  • Efficiency gains for all players in complex care through coordinative services and an internet platform (one-time collection of patient and care-related data, but multi-sided use of the same data)
  • Efficiency gains through digital transformation in care processes (digital support for data and document management)
  • Collection of “routine data” for the purpose of optimizing care and care research (data across all payers and service providers)

6. Ensuring data protection and data security

The APST administers the APVP internet platform, while patient-related data are stored in a protected database. The APST guarantees that data protection requirements are met. To this end, the APST and the Charité – Universitätsmedizin Berlin are working together. The Charité has taken over the hosting of personal data. The data are stored in the Charité's data security architecture. In strict contrast to any forms of open internet applications, the APVP is strictly confidential and only accessible to authorized users. The patient has explicitly consented to the use of his data for the purpose of his outpatient care. The APST works exclusively with medical and care partners who have agreed to the use of patient data for the purposes of care research and strict compliance with data protection. The conditions of data protection are set out in a separate data protection declaration. Consent to data protection by care 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 to patients and their relatives, as the imposition of fees is prohibited for psychosocial reasons. The services of the APST are financed for patients from the fees of the supply partners and from other forms of revenue (third-party financing of the APST). The services of the APST are also provided to the medical partners free of charge, since these partners incur additional expenses without a corresponding economic advantage.

The patients and medical partners contribute to the financing of the AP concept by consenting to the collection and use of data from care research (on the basis of informed consent), which is scientifically and economically utilized by the APST (third-party funded projects of the APST). Care partners are liable to pay costs for using the care management services and the APVP 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 added social value (free provision for patients).