Patient Portal

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.

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.

Email invitation to the Patient Portal

To make it easier to direct patients to the Patient Portal, we've added a feature to the database where you can email invitations to patients 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 at their appointment, 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. Emails cannot be recalled once 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.

Tracking patient completion of questionnaires

We have added a new page onto the database to allow you track whether a patient still needs to complete questionnaires for BADBIR, and also whether or not they have already completed the questionnaires for their current/next follow-up through the Patient Portal. This page can be found by following the "Manage patient questionnaires" link on your centre homepage.

Here is an explanation of the columns you can find on this page:

  • Study number, NHS number, First name, Surname – to allow you to find a specific patient or easily identify the patient you're looking at in the list. Each individual patient at your centre has one entry in this table.
  • Follow-up – The current/next follow-up for this patient. The follow-up displayed is the first valid follow-up for that patient with a due date in the last two months or any time in the future. Questionnaires for a patient follow-up can be entered through the patient portal within four months before the due date or within two months after the due date.
    You can also use this as a rough guide to see where you might enter data if you collected information on the patient today. However, deciding where and when to enter data is dependent on how often a patient has clinic appointments, whether they are on six-monthly follow-up or annual follow-up, and when we last received data for them, so do not take the follow-up suggestion given here to heart. E.g. If a patient were on annual follow-up and their next follow-up was follow-up 10 due in 8 months, the table would list follow-up 10 as the "current" follow-up. However, we wouldn't want this data to be entered into the follow-up until nearer the due date, by which point potentially even more data would have been collected for entry.
  • Status – The current status of the follow-up. Questionnaires can still be completed through the Patient Portal even if the follow-up has already been entered by a clinician through the database.
  • Due date – Due date of the follow-up for reference.
  • Information – This column provides advice about questionnaire completion for this patient. Firstly, it lets you know if the patient still needs to complete questionnaires for BADBIR, based on their follow-up number. If the patient does need to complete the questionnaires, it lets you know if these have already been entered through the Portal or database. This will help you easily identify if you need to prompt the patient to log into the Portal, or if you need to give them paper questionnaires at their appointment.