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 Table of Contents  
ORIGINAL ARTICLE
Year : 2017  |  Volume : 4  |  Issue : 3  |  Page : 118-125

A web based national registry for facial anomalies (DFA) in Bulgaria: An Electronic Medical Record for Facial Anomaly


1 University Hospital of Plovdiv, “St. George”, Plastic and Craniofacial Unit, Plovdiv 4000, Bulgaria
2 ALA-Georgui Izmirliev Street 63, Plovdiv 4000, Bulgaria

Date of Web Publication21-Nov-2017

Correspondence Address:
Youri Constantinov Anastassov
University Hospital of Plovdiv, “St. George”, 4th Floor East, Blvd Peshtersko Chausse 66, Plovdiv 4000
Bulgaria
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jclpca.jclpca_56_17

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  Abstract 

Introduction: An original software platform was developed as a partnership between a Parent Organization (www.ALA-BG.org) and a Cleft Center (Medical University Hospital of Plovdiv, Bulgaria). Methods: The software platform enables both the multidisciplinary team and patients to access and update the information referring to certain treatment stages, the treatment plan and the outcome of a stage in a patient's treatment. The information includes data provided by different specialists involved in the multidisciplinary treatment who work at different geographical locations by using the Internet and the original software platform in conformity with the confidentiality and personal data protection requirements. The patient and family are in charge of their own personal data. The patient specifies which specialists can have access and what they may access. All specialists can add their notes and data (text, audio, pictures, video and PDF files) into the patients database. Results: In 2014 the funding for DFA has stopped and ALA receive the rights to develop the database DFA in an Electronic Medical Record, www.emrfa.org. EMRFA was put into operation in 2015, and in 2017 all target functionalities in the system were completed. More than 800 patients are included and the following of the patients have improved substantially. Conclusion: EMRFA can be easily translated into another language and modified for multidisciplinary treatment of other disorders; furthermore, there is a provision for connection and information exchange with other electronic medical records.

Keywords: Cleft lip and palate, electronic medical record, facial anomalies, register


How to cite this article:
Anastassov YC, Gigov K, Khater RH, Velikova RV, Kazakova MS, Hashova NA, Bojinov MT, Tsarvulanova PS. A web based national registry for facial anomalies (DFA) in Bulgaria: An Electronic Medical Record for Facial Anomaly. J Cleft Lip Palate Craniofac Anomal 2017;4, Suppl S1:118-25

How to cite this URL:
Anastassov YC, Gigov K, Khater RH, Velikova RV, Kazakova MS, Hashova NA, Bojinov MT, Tsarvulanova PS. A web based national registry for facial anomalies (DFA) in Bulgaria: An Electronic Medical Record for Facial Anomaly. J Cleft Lip Palate Craniofac Anomal [serial online] 2017 [cited 2022 Jan 27];4, Suppl S1:118-25. Available from: https://www.jclpca.org/text.asp?2017/4/3/118/218876


  Introduction Top


The treatment and monitoring in facial anomalies should continue throughout a patient's life and involve different specialists joined in a multidisciplinary team such as a surgeon (maxillofacial surgeon, otolaryngologist, plastic surgeon, and neurosurgeon), an orthodontist (and/or dentist), a feeding specialist (nurse, midwife, and speech therapist), an ear, nose, and throat (ENT) specialist, a speech therapist, and others, if required. A psychological approach is essential to permit a global care, and for practical purposes, the team should include evaluation of psychosocial risk factors that may focus the attention of the psychologist and to have an evaluation of these risk factors in the final outcome in each patient. Treatment of facial anomalies should be centralized, but some of this treatment (speech therapy, orthodontic treatment, etc.,) are more easily done near the home of the patient which requires a good communication between the center, the local specialists, and the patient-parents.

Government institutions in Bulgaria have not yet recognized the existence of a center specialized in facial anomalies in our country. To some extent, the Department of Plastic and Craniofacial Surgery at St George University Hospital in Plovdiv, Bulgaria, receive 90% of the cases in the country. With the assistance of the ALA Association (http://ala-bg.org/), the department maintains a multidisciplinary team for facial anomaly treatment which provides consultations on a weekly basis; however, in view of the national character of the disorders, the specialist–patient communication is impeded. When a specialized center exists, the treatment has to be controlled both at the center and in the periphery. Hence, a location (although a virtual one) needs to be created where patients and specialists can meet and exchange information. In facial anomalies treatment, the leading specialist is a surgeon, who performs the surgery and also decides on each patient's need for additional treatment. The rest of the treatment (e.g., orthodontic and speech therapy) is provided by specialists at the patient's place of residence and takes years; therefore, the communication between the leading specialist and the other specialists involved in the treatment is difficult due to the difference in geographical location. Through the computer program developed for the Electronic Medical Record for Facial Anomaly (EMRFA) purposes and placed on an internet server, this software enables patients and specialists to register as EMRFA users, to contact each other, and to write posts in the patients' records. Thus, the efficiency of each patient's treatment can be assessed more easily and accurately, and measures can be taken promptly if any change in the treatment is needed. At the beginning of 2017, there were over 800 registered patients and over 65 specialists in the different specialties. The software features a browser and detailed filters for easy search and processing of data from the EMRFA. The electronic record for facial anomalies covers between 80% and 90% of the cases in Bulgaria.


  Materials and Methods Top


The site EMRFA includes a public section and a section for registered users. The public section contains general instructions regarding the system features and registration options, a demo video, and login for registered users. There are also sections with information on facial anomalies, a library divided by specialty, a specialists' list, a specialists' map, and contacts. There is a page for frequently asked questions and generally accessible statistics on the registered number of patients by year, diagnosis, and location [Figure 1] and [Figure 2].
Figure 1: Initial page in the public section

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Figure 2: Example of how a patient can choose a specialist

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The registered users' section[Figure 3] is the essential part of the EMRFA where the connection between the specialists and patients registered in the EMRFA is made in conformity with the personal data protection requirements.
Figure 3: Page in the patient section where patient searches can be performed by name and psychosocial risk factors

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There are four user types in the EMRFA: Administrator, specialist, patient, or patient's parent/legal guardian (for minor patients or patients placed in residential care institutions). The last two types differ because of the different registration holders, and because each patient's parent/legal guardian can add several patients to one registration. Participation in the EMRFA is voluntary. All participants make their own registrations, and patients sign a declaration of informed consent to their voluntary participation in the EMRFA. There is also a provision for withdrawal from EMRFA participation; the system user needs to submit a written declaration of withdrawal from participation, whereupon his/her registration is terminated, all personal data deleted, and only anonymous data preserved for statistical purposes. The registration management is under the remit of the administrator. The administrator is the user who sets the system up for operation by creating the specialty types and the nomenclatures for each one of them, describing the patient's status and therapy. Status and therapy are publication types on the patient's wall and differ according to the specialty and diagnosis types. The administrator also develops in advance the diagnosis nomenclature referring to the respective disorder [Figure 4].
Figure 4: Diagnosis according to nomenclature

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After a patient has registered and has been approved by the administrator, he/she searches the list of specialists in the EMRFA and selects those in charge of his/her treatment by sending a contact request [Figure 2]. The specialist needs to approve the contact request. Once the specialist–patient connection has been accomplished, each one of them can write posts on the patient's wall, and the publications will be accessible to the patient and all specialists involved in his/her treatment. A very important point is to first make the patient–surgeon connection. In his/her capacity of leading specialist, the surgeon needs to establish the patient's diagnosis [Figure 4] and [Figure 5][1],[2],[3] and thus enable the classification of nomenclatures so that all specialists can post therapy and consultation publications. Practically, patients are diagnosed and give their consent to participation in the electronic record, on their own or through their parents, at the multidisciplinary treatment center, and they can select specialists for their place of residence electronically and after a consultation with the specialist.
Figure 5: Example of a patient's wall with posts from different specialists and the patient

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The system includes the following publication types: commentary, consultation, and therapy. Patients only have the right to post commentaries containing free text and attached files (photographs, text, videos, etc.) [Figure 6] and [Figure 7]. Specialists have the right to use the other two publication types as well, consultation and therapy, working with forms developed in advance for the purpose of standardized completion of documents and subsequent generation of EMRFA reports, but they can also provide free text and attach files. All posts are arranged chronologically, making it easy to track the treatment progress when viewing a patient's record. The dropped out of sight category is created when a patient has not attended a multidisciplinary consultation in person for >2 years after the age when a meeting with the center team was due, or when there has been no consultation or therapy post for the same period. These patients are automatically transferred to the at-risk patient group.
Figure 6: Example in the Files section which allows uploads of video files

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Figure 7: Administrator's panel for reminder addition

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A therapy publication is posted when a patient undergoes therapy, i.e., a surgery, shunting by an ENT specialist, placement of an orthodontic appliance by an orthodontist, etc. When such an event occurs in the course of the treatment, a message of the therapy type is published. The subsequent therapy monitoring or checkups performed in relation to the scheduled treatment are recorded as a consultation post.

Patients can access the information published about them by specialists and can post comments related to their treatment, thereby becoming active participants in their own treatment [Figure 6]. Furthermore, their participation guarantees the authenticity of the EMRFA data. This manner of record maintenance ensures the maximum protection of the rights of patients with facial anomalies, which is the main goal of the organization that has created and maintained EMRFA, i.e., the ALA Association.

An important part of the EMRFA is the developed system of reminder messages (reminders) [Figure 5] and [Figure 8]. Pursuant to the effective European and world standards for facial anomaly treatment, patients need to undergo regular checkups by a multidisciplinary team at certain ages.[4],[5] This plan is different for the different diagnosis types. For each of the EMRFA diagnoses, a reminder has been created with the respective ages when a scheduled regular checkup is due. The reminder system checks the diagnoses and ages of all registered patients on a weekly basis. If, within the forthcoming 1 month, a patient is about to complete the age when a checkup is due according to the diagnosis, he/she will receive a message in his/her electronic mail reminding him/her to make an appointment with the multidisciplinary team.
Figure 8: Messages received in a user's electronic mail regarding new posts in the EMRFA

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In the section statements and reports, the specialists from the center can perform a selective search by different criteria [Figure 9].
Figure 9: Search by different criteria in the Statements and Reports section

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A statistics section [Figure 10] has also been developed in two versions: public and for specialist users only. It makes it possible to assess and analyze morbidity by region and gender, the treatment progress, the number of specialists involved, etc.
Figure 10: The Statistics section

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  Results Top


EMRFA has >950 users and >850 patients included. It has been certified as an intellectual property IS 055 from August 09, 2017.[6]


  Discussion Top


The EMRFA is a new method for collaboration between specialists in a multidisciplinary team with the participation of the patients themselves, and no work organization of this kind has been created in the work methodology of multidisciplinary teams so far. The main goal of the health registers in Bulgaria is to retrieve statistical and epidemiological analyses of morbidity, prevalence rate, mortality, etc., and maintain databases of patients registered with a disease. None of these registers provides possibility for communication between the specialists involved in the treatment and the patients so as to reflect a patient's current state, the treatment plan, and results at each stage. A large number of the existing national health registers[7],[8] aim to make statistical and epidemiological analyses of morbidity, prevalence rate, and survival rate; to maintain a national database of patients registered with a certain disease, for example, http://www.sbaloncology.bg/bg/bulgarian-cancer-registry.html. There are also epidemiological rare diseases registers, ttp://raredis.org/pub/Epi_Reg_Report_2012_BG.pdf, but they have a predominantly epidemiological focus or refer to patients registered and treated at a certain health facility.

The EMRFA involves an inventive step: For its implementation, medical specialists need to possess extensive knowledge both of the different medical specialties to use it for all diseases which need multidisciplinary treatment and of information technology to utilize the possibilities of integrating all ideas into the computer program which operates the EMRFA.

Industrial applicability: the conceptual design is industrially applicable as far as it can be used repeatedly in any area of medicine where multidisciplinary teams work. The model can also be applied to the multidisciplinary treatment of facial anomalies in other countries since its translation into a foreign language has been integrated as a feature during the software development. The feasibility of the conceptual design has been demonstrated by its implementation as an EMRFA, www.emrfa.org .


  Conclusion Top


The model or framework of the program has been standardized to the maximum extent possible so that it could be used for the creation of an Electronic Medical Record for each disease that needs multidisciplinary treatment when the parties are at different geographical locations. Apart from the possibility for its adaptation to different diseases, the model can also be translated into another language and used in another country.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
  References Top

1.
Mortier P, Martinot V, Anastassov Y, Kulik J, Duhamel A, Pellerin P. Evaluation of the results of Cleft Lip and Palate Surgical Treatment: Preliminary Report. Cleft Palate Craniofacial Journal 1997;43:1-9.  Back to cited text no. 1
    
2.
Anastassov Y, Chipkov C. Analysis of the nasal deformities in cleft lip and palate patients by a new rating scale: A preliminary report. Journal of Cranio-Maxillofacial Surgery 2003;31:299-303.  Back to cited text no. 2
[PUBMED]    
3.
Anastassov Y. Facial Anomalies. Polygraph Commerce 2006, Plovdiv, Bulgaria ISBN-10:954-91865-1-2.  Back to cited text no. 3
    
4.
Shaw B, Semb G, Nelson P, Brattström V, Mølsted K, Prahl-Andersenet coll. The EUROCLEFT PROJECT 1996-2000. Standards of Care for Cleft Lip and Palate in Europe. IOS Press. 2000. ISSN: 0929-6743.  Back to cited text no. 4
    
5.
Technical Report of CEN TR 16824. Early care for babies born with cleft lip/palate. Available from: http://europeancleft.org/wp-content/uploads/2016/02/CEN.pdf. [Last accessed 2017 Sep 26].  Back to cited text no. 5
    
6.
Anastassov Y. Un registre clinique des anomalies de la face en Bulgarie. Editions universitaires europeennes ISBN 978-3-639-54031-4. 2016.  Back to cited text no. 6
    
7.
Mark Hammond, L. Stassen. Do You Care? A National Register for Cleft Lip and Palate Patients. Journal of Orthodontics 1999;26:152-7.  Back to cited text no. 7
    
8.
Becker M, Svensson H, Sarnäs KV, Jacobsson S. Computing data about patients with cleft lip and palate. Scandinavian Journal of Plastic and Reconstructive Surgery and Hand Surgery 1999;33:203-8.  Back to cited text no. 8
    


    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7], [Figure 8], [Figure 9], [Figure 10]



 

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