This page is intended for clinicians working on BADBIR to find more information about our Patient Portal. If you are a patient looking for more information, please visit this Patient Portal information page.
You can use the following links to jump to specific sections:
- Introduction and demonstration video
- How the Portal works
- Starting to use the Portal at your centre
- Inviting patients to use the Portal
- Tracking patient completion of questionnaires
Information for clinicians
We have introduced the Patient Portal to provide another method for BADBIR participants to complete questionnaires for us. Previously, we only asked participants to complete the questionnaires on paper when they're attending routine clinic appointments. However, with more appointments being carried out remotely and to allow more flexibility, we have created the Patient Portal so that the questionnaires can be completed easily from their phones, tablets or computers.
Use of the Patient Portal for completion of our questionnaires is optional, and paper copies of the questionnaires can still be used and entered onto the database as before.
Here is an introductory video guide to the portal aimed at participants to demonstrate how to use it:
How the Patient Portal works
At the moment, patients can complete the following information through the Portal:
- DLQI questionnaire
- Patient PGA score
- EuroQol questionnaire (EQ-5D)
- Medical problems questionnaire
- Lifestyle factors questionnaire
- CAGE questionnaire
Newly registered patients can also complete the Patient Baseline Questionnaire through the portal. If the patient logs into the Portal within two months of being consented to BADBIR and you have added them to the database, they will be able to see the Patient Baseline Questionnaire.
Any data entered through the Portal is placed into the most appropriate follow-up based on date. The data will be placed into a follow-up for that patient with a due date in the last two months or the next four months.
Once a patient is into annual follow-up (follow-up 7 onwards), they can still create a Patient Portal account, but they won't be able to enter any questionnaires. To save them time, please confirm that they are still in six-monthly follow-up (follow-ups 1-6) before asking them to register with the Portal.
At the moment, paediatric questionnaires are not available within the Portal. If a paediatric patient accesses the Portal, they will see the same questionnaires listed above. They will not see the CDLQI, EQ-5D-Y, or the CHAQ questionnaires. We are planning to add these to the Portal in the future, but we don’t currently have an estimated date for this.
Starting to use the Portal at your centre
Once you've decided you want to start using the Patient Portal at your centre, you can do so straight away without any input from BADBIR. We just recommend reading the information available on this page which we hope will give a good overview of how the Portal works. Please contact us if you have any further queries.
The addition of the Portal as an alternative method of data collection directly from patients was covered in amendment 12. Amendment 12 was implemented on 06/10/2020. No further regulatory approvals are required outside of this amendment for you to begin inviting patients to use the Portal.
The use of the Portal does not require any patients to re-consent to the study. This is because the use of the Portal is optional and the data we're collecting is the same as we collected previously through different methods (i.e. questionnaires completed in-clinic or posted to the patient).
As the Portal is a new addition to BADBIR, we are currently offering optional training sessions where we will show you a demo of the Portal and answer any questions you may have. You can register your interest for one of these sessions here.
Inviting patients to the Portal
You are allowed to contact patients outside of their normal appointments to invite them to use the Portal. A BADBIR non-substantial amendment was approved on 15/07/2021 allowing you to make this contact. A copy of this amendment and the approval is available in section 3 of your site file to view.
You can contact patients however you wish (e.g. letter, phone, email, etc.) and advise them that more information is available on the BADBIR website on how to register and use the Portal. For your own reference, the participant information page can be found here.
We have created some Portal information handouts that you may find useful. These contain a basic introduction to the Portal and details on where the patient can find more information. They also have blank spaces for you to complete with the patient's identification number and follow-up dates, to help the patient register easily and complete questionnaires when necessary. These handouts come in three sizes, but contain the same information. Click on the links below to download them:
To make it easier to direct patients to the Patient Portal, we've also added a feature to the database where you can optionally email an invitation to a patient containing links to the Participant webpage and the Portal itself. You can access this feature by following the "Invite patient to Portal" link on your centre homepage.
Here is some guidance for using this feature:
- Please only email patients after you've discussed the Portal with them separately, so that they don’t receive any unsolicited emails from BADBIR.
- Only patients who have already been consented to BADBIR and have been registered onto the database should be emailed an invitation. If a patient hasn't been registered onto the database, they won't be able to access the Patient Portal.
- There is no validation on the email addresses that can be used on this page, so please double check the email you enter is correct before clicking send.
- We don't store any email addresses contacted using the feature, nor do we keep a record of any emails sent.
Patients do not have to have received an email invitation in order to register for the Portal. They can also navigate to the website and Portal by themselves and register independently.
You can tell if a patient has registered for the Patient Portal in three ways:
- On the View All Patients page within the database, they will have a phone symbol next to their study ID number. If you hover over this symbol, it will tell you that they're registered with the Portal. You can also filter this page to only view patients who have registered for the Portal.
- On the Patient Summary page for an individual patient, there is a section in the information bar at the top of the page that tells you if the patient has registered for a Portal account or not.
- If the patient has registered for the Portal, they will also have a 'Patient Portal activity log' section below any queries/feedback on the Patient Summary page.
Please note that the above three ways of telling if a patient has registered for the Portal will not be added to the database until towards the end of September 2021. We apologise for the delay. In the meantime, you can use the 'Manage patient questionnaires' page to see if an individual patient has entered questionnaires through the Portal. More details are available below.
Tracking patient completion of questionnaires
There are several ways for you to track if patients have completed questionnaires through the Patient Portal.
Any follow-up that contains data entered by a patient through the Portal will have a green phone symbol next the follow-up number on the Patient Summary page. If you hover over this symbol, it will tell you that the follow-up contains some data entered through the Portal.
If a patient has registered for the Portal, they will also have a 'Patient Portal activity log' below any queries/feedback on their Patient Summary page. This gives you a full history of which questionnaires they have entered through the Portal – it tells you when they completed any questionnaires and which follow-up they were assigned to. Please note that this feature will not be added to the database until the end of September 2021.
Finally, we have added a new page onto the database to help you decide if you need to prompt a patient to log into the Portal to complete questionnaires. This page can be found by following the 'Manage patient questionnaires' link on your centre homepage. It lists the current/next follow-up for each individual patient at your centre (i.e. the first valid follow-up with a due date within the last two months or any time in the future), lets you know if questionnaires need to be completed for this follow-up number, and finally whether or not the questionnaires have already been entered into this follow-up (either by a clinician at your centre or through the Patient Portal).