Guidance

Clinical user guide: newborn outcomes solution

Updated 21 September 2021

Access the solution

As a clinical user, you don’t need to log in directly to the sickle cell and thalassaemia (SCT) newborn outcomes solution. You can gain access through a link in the National Haemoglobinopathy Registry (NHR) providing your centre name is listed on the NHR either as an individual centre or part of a merged network.

Existing NHR Users

To add the SCT newborn outcomes solution to your NHR account, contact the helpdesk.

National SCT newborn outcomes system helpdesk

Email [email protected]

Telephone 0161 277 7917

The helpdesk will let you know when the newborn outcomes solution module has been added to your NHR access.

New NHR users

To get access to the NHR complete the online form. Use an NHS email address if you have one.

In the section titled ‘comments’, add a note asking for access to the SCT newborn outcomes solution. Please include:

• the name of your treatment centre
• your line manager’s name and email address

How to use the solution via the NHR

1. Login to the NHR.
2. Select the patient data tab.
3. Select SCT newborns portal.

Referral data is held in the SCT newborn outcomes solution until the newborn pathway is complete and the data is transferred by selecting the ‘end SCT pathway’ function and then choosing ‘patient transitioning to haemoglobinopathy care’ from the drop-down list. Data will not transfer to the NHR unless the user has accessed the newborn outcomes solution via the NHR.

Lost or forgotten password

If you have lost or forgotten your password for the solution, use the ‘forgotten your password?’ link below the login section to reset it.

The solution will prompt you to enter your registered email address and will send an email containing a link to reset your password.

What to use the solution for

As a treatment centre, you will use the solution to:

• receive screen-positive notifications from the laboratory
• enter SCT pathway details for the children in your care
• refer children to other centres for continuing treatment
• end the pathway when data is complete
• transfer data to the NHR if SCT diagnosis is confirmed and parents give consent

Receive a screen positive referral

When you receive a new referral from a laboratory or other centre, you will:

• get a notification by email
• identify a new notification within the solution (see the notifications bell icon at the top-right of the screen)
• see new referrals highlighted on your patient listing

Accept a referral

Before you can do anything else with a referred patient record, you must accept the referral. This will:

• record the date of receipt within the solution
• send a notification back to the referring laboratory or centre to let them know that the referral was accepted

To accept a referral, click the NHS number link on the highlighted record in the patient listing. This will take you to the patient details page, where you will be prompted to accept the referral.

All data entry fields on this page are disabled until the referral is accepted.

The ‘date screening result received’ will default to today’s date and may need to be amended.

You must click ‘save’ to save any changes you have made before leaving the page.

The referral must be accepted as soon as possible after receipt in order to notify the laboratory that the referral has been accepted.

Add clinical data

Once you have accepted the referral, you can continue to enter patient information and pathway data (such as date result given to parents).

A clinical user may be required to enter data in the ‘organisation responsible for reporting to parents’ field and/or the ‘organisation responsible for first treatment appointment’. If more than one centre has been associated with the child’s record, there will be a drop-down list that includes all centres that have accepted the record previously.

If the final diagnosis is unknown while additional testing is performed, the user can choose ‘not yet confirmed’ from the drop-down list in the diagnosis field.

You do not have to enter this information all at once. You can return to the record at any time to add further information or make amendments.

You must click ‘save’ to save any changes you have made before leaving the page.

If you have any trouble locating a specific patient record, you can use the search function.

Search for a child

To find a specific child’s record in your patient listing, use the search box above the patient listing to search for a record by:

• NHS number
• laboratory reference number
• surname

If you do not see the record you’re looking for, select the ‘include historic patients’ box under the search button. This will show records for children who have been discharged from the pathway or referred on to another centre.

Decline a referral

There is a simple process for declining a referral.

1. Open the record referred to you.
2. Select ‘no’ when asked ‘do you wish to accept this referral?’
3. Type a clear reason why you would like to decline the referral. The record will remain on your view until the MDSAS helpdesk have reverted the decline back to the referrer.

Duty of care is not transferred between users unless referral is accepted.

Refer patients to another centre

To refer a patient to another centre, for example when the patient moves, go to the child’s patient details page by clicking their NHS number and use the ‘refer’ button at the top right.

Enter the referral details and click ‘refer patient’ on the pop-up to send the referral.

When you refer a patient, the destination centre will receive a notification and will need to accept the referral just as when you received the initial referral. The solution will automatically track patient records as they move from centre to centre.

A patient who has been accepted by another centre will no longer appear on your patient listing by default. If you want to monitor or amend data for a patient you have referred, you can use the search function and tick the ‘include historic patients’ box to find their record.

Register an infant who presents clinically

If an infant is first seen in centre without being referred through blood spot screening, you can create a record for them directly from the patient listing page.

Use the ‘create patient’ button at the top right to enter details of the new patient and click ‘submit’ to save the new record. The child’s record will now appear on your patient listing and you can continue to enter data and refer the child on as for any other record received through screening.

Required fields are marked with an asterisk ( * ) and certain fields have checks to help avoid data entry errors.

End pathway

When the record is complete you can end the patient pathway on the solution. To do this, enter the record and select ‘end SCT pathway’ from the top right-hand corner.

This will allow you to select a reason from the drop-down list.

You can end the pathway if:

• the patient transitioned to haemoglobinopathy care
• treatment is not required (result not clinically significant)
• the patient moved abroad
• the patient was entered in error
• the patient died

By selecting ‘patient transitioned to haemoglobinopathy care’ and entering the required data, the record will transfer to the NHR. For this to happen, the user must be logged in to the newborn outcomes solution via the NHR.

Complete the fields in the solution.

The solution will create the NHR record and pull data through from the newborn outcomes solution record, so that the child’s progress through the screening pathway into a haemoglobinopathy centre can be recorded and you will no longer be required to manually enter this information separately.

Other options

When you have duty of care of the child you are also responsible for ending the pathway correctly. Ensure that you select the correct option for ending the pathway if the record no longer needs to remain open.

Save clinical information securely

There are two easy ways to save the clinical form.

You can save it as a PDF:

1. Right click your mouse on the form.
2. Select ‘print’.
3. Select ‘save as PDF’.
4. Choose a secure destination.
5. Name the file and select ‘save’.

You can save it in HTML format:

1. Right click your mouse on the form.
2. Select ‘save as’.
3. Choose a secure destination.
4. Name the fine and select ‘save’.

Monitor your referrals

Should you need to refer the child onto another centre, the patient will no longer appear by default and will have to be searched for using ‘include historic patients’. The record is updated as further information is entered by counsellors and clinicians along the screening pathway.

Notifications and reminders

The solution will send notifications to users to update them on the progress of patients through the pathway, or to alert them to take action (for example when receiving a new referral).

In addition, the solution will automatically monitor key pathway dates to assist with standards 8 (timely reporting of newborn screen positive results) and 9 (timely receipt into haemoglobinopathy centres) of the NHS Sickle Cell and Thalassaemia Screening Programme.

When the relevant dates have not been entered into the newborn outcomes solution within the time limit specified in the standards, the solution will generate reminders on a set schedule until the data is completed or the patient is discharged.

Immediate notifications

Key events in the patient pathway will generate an automatic notification to any involved centres when they are recorded. In particular, centres will be notified when:

• a child is referred to another centre, including the initial referral
• dates for standards 8 (results given to parents) and 9 (child seen in medical centre) are entered

Scheduled notifications

In addition to immediate notifications when an event is recorded, the solution will automatically monitor patient records to provide reminders when key data has not been entered, or when a patient referral is outstanding.

This ensures that all centres involved in the child’s care are prompted to complete pathway data, without need for manual chasing by labs.

Users will receive reminders from the solution:

• daily when a referral has been created but not accepted
• weekly when the result has not been reported to parents within the Standard 8 timeframe
• weekly when the child has not had a first treatment appointment within the Standard 9 timeframe

Reports

The solution provides a suite of automatic reports. You will see a ‘reports’ link on the top navigation menu on all screens.

The list of available reports is tailored to each type of user, depending on their role and the centre they are attached to.

Currently, reports are available in the solution to give users:

• a summary of patients by result type and demographic details
• a data quality report
• performance against standards 8 and 9

Reports can be:

• filtered by date
• exported in a variety of formats such as Word, PDF and Excel

Audit history

Every patient record includes an audit history. This details any changes made to the record since the creation of the record.

1. Open the patient record.
2. Scroll to the bottom of the form.
3. Select the ‘audit history’ button to view the list of all changes made to the record and who made them.

Training

Training can be accessed by contacting [email protected]

Training can be held via MS Teams and will take up to 30 minutes to complete.