Teleconsultation to Improve Epilepsy Diagnosis and Therapy [original]

4 Teleconsultation to

Improve Epilepsy

Diagnosis and Therapy

Krüger, Björn 1

Weber, Christian 2

Müllers, Johannes 1

Greß, Hannah 1

Beyer, Franziska 2

Knaub, Jessica 2

Pukropski, Jan 1

Hütwohl, Daniela 3

Hahn, Kai 4

Grond, Martin 3

Jonas, Stephan 5

Surges, Rainer 1

1 University Hospital Bonn, Department of Epileptology

2 University of Siegen, Institute of Knowledge Based Systems and

Knowledge Management

3 Klinikum Siegen, Department of Neurology

4 University of Siegen, Department of Electrical Engineering and

Computer Science

5 University Hospital Bonn, Institute of Digital Medicine

ORCID:

Krüger, Björn: 0000-0002-1596-6487

Weber, Christian: 0000-0001-6606-5577

Müllers, Johannes: 0009-0000-4883-4459

Greß, Hannah: 0009-0009-7841-5111

Knaub, Jessica: 0009-0000-4308-3094

Pukropski, Jan: 0000-0002-8280-6475

Jonas, Stephan: 0000-0002-3687-6165

Surges, Rainer: 0000-0002-3177-8582

4Introduction

The successful diagnosis of epilepsy necessitates close collaboration

between physicians like general practitioners, pediatricians, neurolo-

gists and epileptologists. Pfäfflin et al. (2020) summarized in a review

study based on direct surveys of healthcare professionals that the

estimated prevalence of treated epilepsy in Germany was 4.7 per 1000

individuals in 1995 and increased to 5.5 per 1000 individuals in 2010.

“The estimated number of patients referred to or treated by neurolo-

gists increased from 193,000 to 266,000.” (Pfäfflin et al., 2020). In 2022,

the German Brain Foundation approximated that “10 percent of all

individuals experience a seizure in their lifetime, with approximately

0.6 percent affected by epilepsy.” (Deutsche Hirnstiftung, 2022)

Of utmost importance is the continuous exchange and

enrichment of available specialized knowledge. The German Society

of Epileptology emphasizes from a reverse perspective, “a substantial

part of the epilepsy problem lies in the fact that existing knowledge

about epilepsy is not being applied.” (Deutsche Gesellschaft für Epi-

leptologie e.V.) Teleconsultations have the potential to significantly

enhance the application of existing knowledge in epilepsy beyond

specialized centers. By facilitating remote communication between

healthcare professionals, teleconsultations break down geographical

barriers, ensuring that individuals in remote or underserved areas

have access to the latest advancements in epilepsy care. Feldmeier et

al. (2022) showed that teleconsultations were well received by patients

and that they “appreciated the time saved and the organizational con-

venience compared to a visit to a university outpatient clinic”. In the

following exploration, we will delve into the potential improvements

that teleconsultations can bring to various processes, examine the

necessary requirements for their successful implementation, and high-

light emerging research questions stemming from the introduction of

teleconsultation services.

Promoting Exchange with Teleconsultation

The continuous exchange of specialized knowledge and treatment

experiences, and the resulting essential connection of expertise, are

vital for the anamnesis, diagnosis, and ongoing support necessary for

early recognition and long-term reduction of personal suffering. Fig-

ure 1 outlines a typical process without possibility of teleconsultation.

Patients with suspicion of epilepsy can be referred to non-specialized

clinics (local clinic) by general practitioners or emergency services and

4undergo locally established anamnesis interviews. They are diagnosed

by local physicians, naturally with a bias on the clinic’s specialization.

Patients may receive initial medication treatment, and are referred

back to the general practitioner, or in severe cases to a specialized

center for seizure disorders (specialized clinic). Appointments for ex-

aminations and referrals may be associated with varying and extended

waiting times that are not well-aligned with the individual urgency.

This diagnostic delay is to the patient’s disadvantage, as it can lead to

anxiety, confusion, and frustration on a personal level, and in more

severe cases to misdiagnosis and progression of untreated seizure

condition (Alessi et al., 2021). Consultation with specialists are neces-

sary for a confirmed diagnosis, since cases in the context of epilepsy

are highly unique.

Employing teleconsultation between a local clinic and a specialized

clinic is outlined in Figure 2. The local clinic can rely on diagnostic

assistance from the specialized clinic and start an appropriate therapy,

possibly with no need to transfer the patient to the specialized clinic.

This will benefit the patient, the local clinic, and the specialized clinic.

The patient will undergo medically sensible examinations and receive

tailored therapy. The local clinic can focus their resources based on

effective recommendations from the specialized clinic and assimi-

late knowledge in the process. The specialized clinic might be able to

provide care for a patient who might otherwise have to be transported

and admitted to it.

local

clinic

admission

anamnesis

diagnosis

therapy

general

practicioner

emergency

services

specialized

clinic

admission

anamnesis

diagnosis

therapy

general

practicioner

further

treatment

referral

after seizure

dis-

charge

Figure 1: Process without teleconsultation.

transfer

referral

follow-

up visit

dis-

charge

Focusing on clinical processes, we specifically see the following po-

tential benefits arising from a teleconsultation: 1. Ruling out differen-

tial diagnosis such as syncopes or dissociative disorders. 2. Identifying

treatable causes for epilepsy (e.g. autoimmune inflammation).

3. Collective assessment of therapy options during the different stages

of the condition (onset, after second medical trial, in chronic phase).

4. Collective evaluation of additional diagnostic tests (such as electro-

encephalography (EEG) and magnetic resonance imaging (MRI), which

require specific expertise for interpretation. 5. Enhanced preparation

for referrals through additional examinations that can be conducted

locally during waiting times at the local clinic.

Requirements for Teleconsultation

Teleconsultation is often technologically limited, meaning only a

procedure for e-mails, phone, or video calls is established, and the

document exchange is limited to specific file formats or a specific

platform, making it impossible or tedious to share and evaluate patient

data. We want to outline the requirements for a modern teleconsul-

tation. The technological basis for any teleconsultation is a secure

channel between both parties, usually realized by a virtual private

network (VPN). This secure channel may be provided by an exter-

nal company responsible for the software solution, or the clinic’s IT

department, or another entity. The exchange of data between clinics

is not straight-forward, as there is no nationwide all-in-one solution

Figure 2: Process with teleconsultation.

local

clinic

admission

anamnesis

therapy

general

practicioner

emergency

services

specialized

clinic

diagnosis

recommendation

for therapy

general

practicioner

further treatment

tele-

consultation

request

tele-

consultation

response

referral

after seizure

discharge

4offering to transfer all required data through one platform. The project

“Virtuelles Krankenhaus Nordrhein-Westfalen”, which uses the elec-

tronic case file (Elektronische Fallakte, EFA) to share data (Dohmen et

al., 2021), might be a promising solution in the future. At this time, the

project is limited to only a few specialized departments and is current-

ly not available for epilepsy specialists, but represents an expandable

base structure for epilepsy support.

Medical patient data, such as master data, anamnesis

and recorded vital parameters, are saved in the hospital’s hospital

management system (Krankenhausinformationssytem, KIS). Direct

sharing between two KIS is feasible if hospitals use the same product,

or exchange through a common standard (Health Level Seven (HL7),

Fast Health Interoperability Resources (FHIR)). Expert exchanges have

shown that in many teleconsultation projects, data still has to be cop-

ied manually into a separate forms, hindering the acceptance by medi-

cal personnel and increasing the risk of errors in the manual process.

Anamnesis needs to be standardized to guarantee a

streamlined communication between the involved partners. Such stan-

dards ensure that already in first consultations, relevant base informa-

tion for a distributed diagnosis are collected to minimize communica-

tion overhead between the requesting and specialized clinic, as well as

preventing repeated anamnesis. In addition, the process of standardiz-

ing the anamnesis already transfers first knowledge to the requesting

entity by raising awareness for critical questions and observations.

Image data, such as computed tomography (CT) and

MRI, are saved in a picture archiving and communication system

(PACS) in the Digital Imaging and Communications in Medicine (DI-

COM) format, with the same implications as for KIS: Sharing between

the hospitals may be possible with little or no obstacles, or it is again

required to export data and send it through another platform. In the

case of epilepsy, EEG traces and associated surveillance videos are of

high interest. They often use proprietary formats with no standardized

way to exchange them between hospitals that are equipped by differ-

ent vendors. It is either necessary for both sides of the teleconsulta-

tion to have respective viewers or software licenses, or the data needs

to be converted into the DICOM format (Lang et al., 2023; Halford et

al., 2021).

Even in cases where processes are established on the

technological side, taking into consideration all points mentioned

above, teleconsultation can be hindered by missing training or limited

acceptance by medical personnel. Thus, it is indispensable to include

medical staff into the planning stage of any teleconsultation project.

Especially user interfaces and user experience have to be catered to

4their needs. It is therefore required to interview clinicians on both

sides to understand their work flow, preferred way of communication,

and expectations towards the technological implementation of a tele-

consultation.

Legal Boundaries

Apart from technological requirements, various regulations need to be

considered when setting up the infrastructure and conducting a tele-

consultation in Germany. These are listed in the following.

Digitale-Versorgungs-Gesetz (DVG):

The DVG allows physicians to prescribe health application (digitale

Gesundheitsanwendungen, DiGA), it regulates the integration of the

electronic health record and facilitates the use of telemedical applica-

tions. Apps need to undergo a validation procedure of the Bundesin-

stitut für Arzneimittel und Medizinprodukte (BfArM) to be listed in the

DiGA catalogue.

Bundesmantelvertrag-Ärzte (BMV-Ä):

The BMV-Ä is an agreement between the Kassenärztlichen Bundes-

vereinigung (KBV) and the GKV - Spitzenverband (Spitzenverband

Bund der Krankenkassen) about contract medical care. It’s legal basis

is § 82(1) SGB V.

Röntgenverordnung (RöV):

The RöV contains security guidelines regarding x-ray damages. Since a

CT cannot be excluded during examination, the initiator of a telecon-

sultation takes the responsibility in cases of liability as further speci-

fied in § 630(h)(4) BGB.

(Muster-)Berufsordnung für die in Deutschland tätigen Ärztinnen

und Ärzte (MBO-Ä):

According to §7(4) of the MBO-Ä, teleconsultations realized with

telemedical solutions are only allowed if their application is medically

justifiable, the physician’s diligence can be adhered and if the patient

agreed on an informed consent.

General Data Protection Regulation (GDPR):

Several articles of the GDPR apply when using teleconsultation: §4(7)

highlights the importance of the responsibility when using medical

data (e.g. health insurances, medical practices, hospitals); §4(7) and §26

4cover the shared responsibility of data processing when using telecon-

sultations; §9(2) regulate the patient’s consent.

Bundesdatenschutzgesetz (BDSG):

The BDSG complements the GDPR and regulates how misuse of pa-

tient-related data processing can be prevented.

Fünftes/Zehntes Sozialgesetzbuch (SGB V/X):

The SGB V contains regulations for statutory medical insured indi-

viduals; SGB X serves the protection of social data and regulates legal

relationships in Germany.

Licenses and certifications for telemedicine need to be considered

for each region separately.

Teleconsultation in Epilepsy in Germany

Mues et al. (2021) share experiences with their implementation of a

teleconsultation at the Ruhr-Epileptologie Bochum clinic (Tele-Epi-

leptologie Ruhr (TE Ruhr); since 2018) and compare themselves to

four other employed teleconsultations. These are Telemedizinisches

Netzwerk für Epilepsie in Bayern (TelEp; since 2013), Epilepsiezentrum

Greifswald (EPI-TEL; funding 2020-2023), Akut-neurologische Ver-

sorgung in Nord-Ost-Deutschland mit telemedizinischer Unterstützu-

ng (ANNOTeM/ANNOTeM-Epi; funding 2017-2021) and EpilepsieNetz

Hessen Evaluation (ENHE; funding 2017-2021).

In the projects, the consultation is between clinics (TE

Ruhr, TelEp, EPi-TEL) or between clinics and medical practices (TelEp,

ANNOTeM-Epi, ENHE). TE Ruhr and TelEp also include national clinics,

and TelEp and ANNOTeM-Epi employ teleconsultations between a

physician and their patient. All participating entities use a web plat-

form for the teleconsultation, and all except for ANNOTeM-Epi use

it also for media upload. The representation of the EEG data on the

specialized clinic’s side was realized in different ways: TE Ruhr con-

verted the (Video)-EEG ((V)EEG) data into the DICOM standard, TelEp

uses a virtual EEG client which is a network-based hosted EEG ser-

vice, ANNOTeM uses the vendor-specific software of their EEG system

(VIMED) and ENHE an EEG reader.

Evaluations of the conducted studies showed an overall

satisfaction, both on the practitioners’ and the patients’ side. All par-

ticipants profited from the knowledge exchange with led to a higher

patients’ satisfaction, a better therapy outcome and therefore a higher

4quality of life for the patients . Some of the participating clinics criti-

cized the time consuming effort and the technical complexity for set-

ting up a teleconsultation which led to a less frequent utilization. Also

the installation of such a system and the integration of the local EEG

system was seen as an impediment. In addition to that, the remunera-

tion played a roll which is not regulated yet (Audebert et al., 2022; Mues

et al., 2021a; Mues et al., 2021b; Universitätsklinikum Erlangen, 2018).

Resulting Research Questions

When setting up the teleconsultation, the following research questions

emerge, which we are going to explore during this project:

How can a teleconsultation between clinics be technically imple-

mented in a way that aligns with security and diligence standards

while remaining open to future developments?

Various forms of teleconsultations are already estab-

lished nationwide and can serve as examples. Different technical im-

plementations and safeguards are utilized, including dedicated direct

connections and flexible participation concepts that require extended

integration with the telematics infrastructure standards and other Ge-

matik standards. Furthermore, the purpose and scope of applications

may impose varying requirements on data transmission, presentation,

description, and continuous data extension. Therefore, the technical

implementation of teleconsultation should be designed to accommo-

date future concepts and aim to create a shared digital medical space.

How should anamnesis, diagnosis, and therapy be designed, docu-

mented, and practiced across clinics to establish teleconsultation

and long-term, improved, patient-oriented care?

To support a targeted and flexible diagnosis, stan-

dardized processes are employed to ensure the desired diligence,

quality documentation, and tracking, thus relieving the central med-

ical decision-making. These processes are partly implicit and partly

explicit, taking into account factors such as the frequency of individual

diagnoses or cases. Processes may vary between clinics. How should

an anamnesis and diagnosis process be designed to include all nec-

essary information in the case of an indication for epilepsy? How can

this process be made explicit, integrated into practiced documenta-

tion, digitally preserved, and supported? How can it be developed in

interactive formats, and how can the insights gained be integrated into

collaborative exchange and training?

4How can the emerging processes be established, supported, and eval-

uated in terms of healthcare and economics?

Even through an exploration of existing data and pro-

cesses, the awareness and explicit sharing of knowledge are expected

to impact anamnesis, diagnosis, and therapy. Further changes are

anticipated based on the implementation of teleconsultation and

technical support. To assess these changes, ongoing documentation

and evaluation are essential. In the initial step, historical case data

must be collected and analyzed as a baseline. Additionally, the planned

steps need to be mapped onto an overarching healthcare process.

This healthcare process is then to be assessed in terms of health and

economic factors.

Conclusion

Epilepsy is a common and severe disease which needs specialized

knowledge to be diagnosed and appropriately treated. Since this is not

given in every clinic, an exchange between practitioners in specialized

and non-specialized clinics for better and faster diagnosis as well as

tailored therapy is desirable. Several teleconsultation projects have al-

ready shown that this is possible and beneficial. We aim to implement

such a system, too, by considering the patients’ and practitioners’

needs, the existing telematics infrastructure and Gematik standards,

as well as legal boundaries.

4References

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