PaRIS (Patient Reported Indicator Survey)

By taking part in the project, you will be part of this change towards a more holistic medicine, with an integrated care approach and a focus on patients’ needs.

For you, as a general practitioner, this is about subscribing to a process of self-evaluation and continual improvement of the quality of your care. In this sense, you will receive a report of the anonymised and aggregated resultats from your patients. 

Primary care plays an essential role in the care management of chronic patients. At the national level, the information collected from your practice and your patients will be useful in understanding how the organisation of care meets patients’ needs.  

Your participation is split into two phases :

1. You fill in the questionnaire (15 minutes) for general practitioners on this link (link is external) and login with the survey code you received by e-mail. If you have lost your code, you can request it by e-mail. You can fill in the questionnaire until de 31^th of September 2023. 
2. You draw a list of eligible patients from your software (15 minutes). The patients must be aged 45 years old and older, and have had contact with a GP from your practice in the last six months. You have until the 31th of June 2023 to complete this task.

To draw the list of eligible patients, please follow theses steps. This task can be done by any employee at your practice.

1. Select your software program to see the procedure you need to follow to draw the list of patients:  Care connect, Daktari, HealthOne,  Medinect  HealthOne, medispring_fr, medispring_nl  Omnipro Unfortunately, practices working with the Nexuzhealth software cannot participate because this software does not yet allow for the sorting of patients. This list must contain the following information: surname, first name, address, number, postcode, municipality, mobile phone number, age and gender.
2. Select 260 patients randomly in Excel by following  these instructions.
3. Check and adjust your list if necessary: remove the information that accompanies a telephone number, replace patients who do not wish to be included in surveys, patients who are going through a difficult event at the time of the survey (hospitalisation, palliative care, death of a relative, …), as well as patients you no longer follow (moving, death, …).
4. Transpose your list into the .scv file received by mail from Symeta Hybrid. If you wish to receive this file again, contact us by mail.
5. Send the completed template to Symeta Hybrid following the procedures described in the email received from Symeta Hybrid. If you wish to retrieve this information or if you have any issues, please send us an e-mail.

You can find more information on the legal framework of the patient recruitment method in this toelichting.pdf note_explicative.pdf.

We encourage you to fill in the questionnaire online. However, a paper version of the questionnaire is also available (See the “Frequently Asked Questions” section: “How can I get a paper version of the questionnaire?”). 

1. To participate via internet, click on this link (link is external) and enter the identification code (2BEXXXXXXXXX) you received in the letter or by text message, to identify yourself. 
2. To participate in the survey on paper, complete the paper questionnaire you received and return it free of charge in the pre-addressed and stamped envelope provided for this purpose. You will receive the paper questionnaire by post in the next (and last) reminder letter.

Your participation is voluntary, unpaid and confidential. The survey questionnaire will take approximately 20 minutes to complete. You only have to fill it in once. So that you don’t receive a reminder, we advise you to fill it in as soon as possible. If you do not wish to take part, you can ignore the reminders. 

Your participation requires you to sign a document declaring your consent, you will find it attached to the online questionnaire or to the paper version, depending on the method used. To ensure your participation remains anonymous, you will sign using your identification code rather than your name.  

All general practices can participate. However, you need an identification code to participate. You can request this via this form. Participation is voluntary and unpaid. It is done at the level of all GPs in the practice because all patients are concerned. 

Your participation is on a voluntary basis. It concerns a process of self-evaluation and improvement of the quality of care, and not a control or monitoring of the quality of your work by a third body. 

Your participation is confidential, and your data will be analysed in a pseudonymised manner.  

Your participation comprises two activities: 

1. Filling in the questionnaire (by a general practitioner of the practice): 15 minutes.
2. Draw a list of eligible patients (see the steps in the above section “Participating in the survey as a general practitioner”). This task can be carried out by any employee at your practice: 15 minutes. 

The questionnaire must be completed before 31 September 2023. The list of eligible patients has to be sent to Symeta Hybrid SA before the 30 June 2023. (The patients will be invited to participate from early September.)

Inviting patients randomly rather than during an appointment, enable to avoid selection bias. It also guarantees greater confidentiality regarding the patients’ participation, as well as reducing your workload related to your participation.

In accordance with the law of 30/07/2018, in order to strengthen the security and protection of personal data, the data controller (Sciensano) must use a Trusted Third Party, in this case Symeta Hybrid SA, to pseudonymise the data. Symeta Hybrid SA assigns a unique code to each patient so that Sciensano will never have access to the identity of the patients. Symeta Hybrid SA is also responsible for sending the invitation letters to the patients.

An agreement will be signed between you and Sciensano for the processing of this data. 

Symeta Hybrid SA sends out the invitations to the patients on the basis of the list you sent them and in respect of the legal frame. 
Your patients will receive at maximum 3 communications: a first invitation letter, a sms reminder and a second and final postal reminder with a paper version of the questionnaire.  A brochure with more detailed information about the processing of their data is attached to the letters, allowing them to make an informed decision about their participation. 

Your name or your practice’s name will be mentioned in the letters. 

We encourage you to work with Symeta Hybrid for patient recruitment as this method allows for more confidentiality regarding patient participation. However, we understand that you do not want to share these data with a third party. 
An alternative method is therefore possible but it increases the workload of your practice. We will provide you with the necessary materials for invitation (letters, envelopes, stamps) and you will be responsible for completing the envelopes (name and address) and sending them. 
If you would like to work with this method, please contact the team by email.

We aim to have 75 patients per practice. With an estimated participation rate of 30%, 260 patients should be invited (this participation rate was confirmed during the pilot phase of the study).

Yes, in order to make the survey more accessible to a large number of patients, the questionnaire is also available in English, Spanish, Italian, Turkish and Arabic, both online and in paper version. For the paper version, the patient has to request it, or if you think that a significant proportion of your patients would be interested in certain languages, we can send you translations for patients to collect at the practice.

Patients who do not have a chronic condition may be on the list of eligible patients. They can still participate in the survey and will provide a reference group. According to the two inclusion criteria (≥45 years old and ≤6 months since the last consultation), we estimate that the sample will include a majority of patients with at least one chronic condition. 

You have been invited to participate in the PaRIS survey because your general practitioner is taking part in the survey. You have been randomly selected among the patients of the practice aged 45 years old and more and who have visited a doctor in the last 6 months. Only people who have received an invitation can participate via the unique identification code assigned to them. 

Your participation is voluntary and free from all constraints. Your decision to participate in the survey or not, will not influence the quality of care you will receive. Your doctor will not be aware of your participation.

Go to the secure website by clicking on this link (link is external) and enter your identification code shown in the box on the top left of the letter and the sms inviting you to participate in the PaRIS survey.

This code serves several purposes. Primarily, it makes it possible to pseudonymise your data, i.e. to replace your details with a code, and thus prevent your responses from being linked to your identity, in order to guarantee the confidentiality of your participation. Your code is also linked to your doctor’s code, which will enable to link your doctor’s questionnaire to yours anonymously during the data analysis. 

For reasons of data protection and to ensure the confidentiality of your participation, we do not have access to your identification code. If you have lost it, you can wait to receive the sms or the postal reminder in which your code will be mentioned.

We strongly encourage you to complete the questionnaire on the secured website to ensure better processing of your data. You can also ask a friend or relative to help you fill in the questionnaire. However, a paper version of the questionnaire is available. It will be sent to you automatically in a reminder letter. You do not need to request it.

Yes, in order to make the survey more accessible to a large number of patients, the questionnaire is also available in English, Spanish, Italian, Turkish and Arabic. We encourage you to use the online version of the questionnaire where you can directly select the language of your choice. However, if you prefer to receive a paper questionnaire, you can request one by phone (02/642.54.56) or by e-mail.

You can access your data to change or delete it, by submitting a request by  e-mail or by phone (02 642 54 56) to the person responsible for the project. Your data will be accessible for a period of three months after it has been collected. 

Yes, you can stop and close the web page at any time, your progress is automatically saved. When you are ready to continue completing the survey, take your ID code and return to the survey login page via this link (link is external), you will be taken back to where you left off.

Please note that although your answers will be saved automatically, they will not be sent to us if you do not press the “Send” button at the end of the survey.

Yes, patients without a chronic condition are also invited to participate. They make up what we call a reference group, which means that their results will be compared to those of patients who have chronic diseases. 

The questionnaire will allow you to reflect on how you experience care services and the impact of your care on your health.
Your doctor will receive a report, with anonymised data from all participating patients, to help him or her better understand how you perceive the care they provide and to improve the quality of their work. 
At a national level, your responses will also help us to understand how well the current healthcare system is meeting the needs of patients, and to draw conclusions that will help the policy system to make it more responsive to patients in your situation.

No, your doctor will not even know if you choose to participate or not and does not have access to your responses. However, he/she will receive a report of the aggregated and anonymised statistical results, which will enable him/her to understand how to improve the quality of the care he/she provides.

We will not be able to link your responses to your name at any point. 

Your participation is not mandatory. However, as long as you have not expressed your refusal to participate on the online website of the questionnaire (via this link (link is external)), you will continue to receive reminders which you can then ignore. In addition to the first invitation letter, you will receive an SMS and a reminder letter. 

The PaRIS survey has been designed to protect the privacy of the participants in the survey, all personal information will be kept confidential. In accordance with the conditions imposed by the GDPR within the context of the collection of personal data, the OECD’s and Sciensano’s DPOs have checked that all parties adhere to the highest regulatory standards in terms of the legal and secure processing of sensitive personal health data, data protection and the European directives on data protection, as well as adhering to all of the applicable national legislation. You can consult the privacy policy by clicking on this link:  privacy_notice.pdf

For further information on the protection of your personal data, you can consult the Sciensano Data Protection Officer by e-mail. 

Patient data (surname, first name, address, telephone number, month and year of birth and gender) are collected solely for the purpose of inviting them to participate in the PaRIS survey and to check the representativeness of the participants. It is stored securely for a period of 6 months on the database of Symeta Hybrid SA and is then securely deleted. None of this data will be shared with international partners who process data from the questionnaires.

No data about your health is collected.

The data will be processed in accordance with the GDPR and the international standard for the security of information (ISO 27001).

Sciensano is responsible for conducting the PaRIS survey in Belgium. The survey has been approved by the Ethical Committee of Université Libre de Bruxelles, Brussel, Belgium (reference number: B4062021000203) prior to the beginning of the recruitment.

Your responses are sent directly to the databases of the Ipsos MORI research institute and the OECD where they are stored and analysed. The OECD will publish indicators from the survey, the oublic data will be anonymised and aggregated. 
Only the pseudonymised data are sent (which is linked to your identification code and not to your name). 

However, each participating country will maintain access to their national anonymised data. Access will be subject to a data-sharing agreement that specifies the data security and privacy protection rules.