Romanians want to know everything that concerns their health.
- FACIAS encourages the Romanian government to expedite the development and activation of medical files, DESI (Electronic Medical File), so that patients have immediate access to their own medical records regardless of where they were treated.
- FACIAS also acts to ensure that the Patient has the right to the Observation Sheet from the hospital without the need for a court order.
One of the goals of the project "Romanian patient - fair laws and maximum transparency" is to generalize access to the medical file in real time, including the observation sheet.
FACIAS, the Coalition of Organizations of Patients with Chronic Diseases in Romania (COPAC), and the Patients' College collaborate on the project.
Why did FACIAS decide to devote resources to this goal?
The goal was created in response to complaints received from approximately 1000 citizens via the FACIAS questionnaire, as well as messages received. When FACIAS ran the "Be Informed, Don't Abuse" project for the Health component between April 2021 and February 2022, we were asked for assistance with the following:
- Simple access to a list of personal medical expenses
- ● Easy access to the Medical File and the Observation Sheet
- ● Surgical interventions to be captured on video.
- ● The dangers posed by intrahospital infections to patients, as well as the lack of transparency on the subject
- ● Laws are not being applied because of a lack of methodological application norms.
Why do we believe it is necessary to make this Objective a reality?
- The patient has real-time access to his medical file and history, and doctors can see his entire medical history if necessary, without the need for additional documents .
- Medical personnel would no longer have to waste time searching for and analizing the patient's papers, that is if he has them, instead of treating him.
- The observation sheet (the one on which the doctors record everything) is concerning the patient directly and romaninan cicizens are bewildered as to why they require a court order to obtain it.
Situation Prior to the Project
The Health Center has an active Medical File on its website, which each of us can access by typing our NCP.
The data and information in the DESI are organized into modules, which are as follows: the "Emergency Summary" module, the "Medical History" module, the "Patient-declared history" module, the "Medical documents (including observation sheets)" module, and the "Personal data" module (Article 346^6 of Law . 95 / 2006).
Everything works in theory, but in practice, doctors do not activate our file for a variety of reasons: their software does not communicate/is incompatible with that of CNAS/they are unaware that this DESI exists and what it does.
Another problem raised is that of access to the Observation Sheet - the patient has access to it, only by court decision, although it concerns him directly!
Today, the following practice is common in hospitals:
- Medical file:
The patient has been admitted to Hospital A. The patient's medical history is taken upon admission (investigations).
Hospital A's staff can only see data from their database; they cannot see what the patient did in other hospitals (B,C,D...).
The patient is asked to bring paperwork from previous hospitalizations or doctors.
At admission and discharge, but also along the way, medical personnel spend about 30-40% of their time on paperwork and bureaucratic procedures, rather than allocating all of their time to patient care/treatment.
The patient is given the Discharge Form upon discharge, which states: the patient presented himself at the hospital for...with the symptoms.... He was given/performed....x, y, z operations/Upon discharge, his condition is........ and they are recommended....
REIMBURSEMENTS - expenses/patient - patient has no access to it (FACIAS encountered only one exception, the other days, during the research)
- Observation record (opens on admission)
It is only accessible to doctors, medical personnel involved in the patient's medical care, and medical/doctors requested for interconsultations.
Except by court order, the patient does not have access to the Observation Record.
The statistics departments in the hospitals enter the observation records into the database by code.
We are not sure if it's common practice, but there are hospitals that don't have Statistics connected to the Internet in order to avoid viruses and secure information.
The observation records are also archived in the hospital for many years.
All treatments, investigations, analyses, and interventions are listed on the discharge form for the patient.
The situation regarding access to the observation record by court decision is an anomaly, as long as Art. 24 of Law No. 46/2003 provides that we have access, without specifying this condition.
In any case, we will notify you as soon as we have a definitive answer on this matter.
Legislation that partially regulates the Objective's field
Article 346 of Law No. 95/2006:
https://legislatie.just.ro/Public/DetaliiDocument/71139
Art. 24 of Patient Rights Law No. 46/2003:
https://legislatie.just.ro/Public/DetaliiDocument/41483
(1) The patient has access to his or her personal medical information.
(2) The patient has the right to designate, through an agreement recorded in the annex to the general clinical observation record, a person who will have full access to the confidential information from the observation record both during the patient's life and after the patient's death
Order No. 1123/849/2016 of the Minister of Health and the President of CNAS for the approval of the data, information, and operational procedures required for the use and operation of the patient's electronic health file, with subsequent amendments and additions (https://legislatie.just.ro/Public/DetaliiDocument/182511)
What have we done until 8th of August?
We sent project-related questions to several institutions with management and legislative authority in the field, including the Ministry of Health and CNAS.
The answers are also posted in full on the website as we receive them.
To collect even more information from citizens, we created the Objective Questionnaire. You can fill out the questionnaire here:
What did the institutions tell us that we were unaware of?
- The Ministry of Health has yet to respond.
- CNAS level:
currently more than 16.8 million people are insured in the social health insurance system in Romania
DES (Electronic Health Record) is attached to the health card
Health cards do not register the costs per patient in the health system; rather, they confirm the identity of the patient who received services
There is data at the CNAS level; available statistical data can be found in the annual activity report, which is published on the CNAS website and can be accessed at the following link
https://cnas.ro/rapoarte-de-activitate/
Guardians can request cost/patient information for minors.
TITLE IX1 is governed by the provisions of Law No. 95 of April 14, 2006, relating to health reform, with subsequent amendments and additions. The patient's electronic health record is established, as is the obligation of all medical service providers to transmit documents in the DES system, without distinction based on the existence of a contract with CAS, state or private, including sanctions for non-transmission of documents, regardless of supplier type. Legii nr. 95 din 14 aprilie 2006 privind reforma în domeniul sănătăţii cu modificările și completările ulterioare, TITLUL IX^1 Dosarul electronic de sănătate al pacientului, este instituită obligaţia tuturor furnizorilor de servicii medicale de a transmite documente în sistemul DES, fără a face distincție între aceștia pe criteriul existenței unui contract cu CAS, de stat sau privat, fiind prevăzute inclusiv sancțiuni pentru netransmiterea de documente, indiferent de tipul de furnizor.
Because the DES system is health related, it does not process financial information even though it collects all medical documents regardless of source
CNAS has access to the Electronic Health Card system (CEAS) and has purchased maintenance, administration, and technical support services to ensure the system's functionality.
What actions have we proposed in support of the Goal until September 2022?
- The other requested responses are also being received and will be brought to your attention.
- We will compile the survey responses and publish the research results.
- We will hold an online public debate, to which we will obviously invite hospital representatives and doctors who will be responsible for activating our electronic medical records.
- We will continue to request immediate access to the Observation Record and will have our electronic medical files activated as soon as possible.
- We will create an online petition with the question: "Do you want instant access to DESI?" - we will send the results to family doctor associations, hospitals, clinics (associations), patient associations, and the Ministry of Health, in order to create pressure that will lead to the mobilization of those who activate the electronic medical files.
As is customary, we will keep you updated on all aspects of the "Romanian patient - fair laws and maximum transparency" Project.