epiCentre
Data Set and Collection Protocol Manual
Nicolas Fenwick and David Webster, August 2013
Reviewed by Nicolas Fenwick, October 2013
Contents
Introduction ............................................................................................................................................ 4
Structure of ePPOC Data ......................................................................................................................... 5
Collecting Patient Reported Outcomes ................................................................................................... 5
Referral and Initial Patient Questionnaire........................................................................................... 7
Episode Start and Pathway Start ......................................................................................................... 7
Pathway Review .................................................................................................................................. 8
Pathway End ........................................................................................................................................ 8
Concurrent Pathway Data Collection .................................................................................................. 8
End of the Episode .............................................................................................................................. 9
Episode Follow up ............................................................................................................................... 9
Collection Protocol: a more formal description .................................................................................... 10
ePPOC Data Items: Further Details ....................................................................................................... 11
Patient ............................................................................................................................................... 11
Episode .............................................................................................................................................. 11
Business Rules for Episodes .......................................................................................................... 12
Pathway ............................................................................................................................................. 12
Business Rules for Pathways ......................................................................................................... 12
Service Event ..................................................................................................................................... 13
Conclusion ............................................................................................................................................. 13
Creating and Managing Questionnaires................................................................................................ 14
Options when prompted to create a questionnaire ......................................................................... 14
Action ................................................................................................................................................ 14
Sent Status ........................................................................................................................................ 15
Questionnaire Mode ......................................................................................................................... 15
Forwarding a questionnaire to a patient............................................................................................... 16
Email.................................................................................................................................................. 16
Post.................................................................................................................................................... 16
Telephone.......................................................................................................................................... 17
In clinic .............................................................................................................................................. 17
After completing the questionnaire online ....................................................................................... 17
After a questionnaire has been sent: Completed Status ...................................................................... 18
Expiration and follow-up of questionnaires .................................................................................. 18
Receipt and completion of a questionnaire .................................................................................. 19
Cancelling a questionnaire ............................................................................................................ 19
Tracking and following up questionnaires ............................................................................................ 20
Required (Sent Status: Required) ...................................................................................................... 20
Scheduled (Sent Status: Scheduled).................................................................................................. 20
Awaiting Response (Sent Status: Sent, Completion Status: Awaiting response) .............................. 21
Requires Follow-up (Sent Status: Sent, Completion Status: Expired) ............................................... 21
Received (Completion Status: Received) .......................................................................................... 21
Completed (Completion Status: Completed) .................................................................................... 22
Final Thoughts ....................................................................................................................................... 22
Introduction
Welcome to epiCentre! epiCentre is the software for entering and managing data relating to ePPOC
(the electronic Persistent Pain Outcomes Collaboration).
ePPOC is a program whose purpose is to provide outcomes based benchmark reporting for pain
management clinics throughout Australasia. It involves a development of a standardised dataset,
data collection protocol and regular submissions of de-identified data for analysis and reporting.
As the software at the heart of ePPOC, epiCentre provides an easy-to-use way of collecting data
which conforms to the ePPOC dataset. In the ePPOC dataset, there are really two types of data
collection: clinician provided data and patient reported outcomes. In order to create a flexible
solution epiCentre is integrated with an online data collection tool called ‘REDCap’.
REDCap is written and maintained by Vanderbuilt University in Tennessee, USA and is an online
survey tool. REDCap is hosted on a web server in a secure data centre at University of Wollongong.
epiCentre is able to create instances of these questionnaires on the REDCap server, and to
automatically synchronise the data between REDCap and your hospitals epiCentre database. This
integration has been implemented in such a way that REDCap never stores, or even sees, any
identifiable data about the patient.
The patient questionnaires are created in REDCap. epiCentre and REDCap support the completion of
these questionnaires by either the patients themselves or by clinical staff, depending on the
preference of each facility. This means that in practice, patient reported outcomes in ePPOC can be
collected via a variety of methods.
The purpose of this document is to equip you, the user, with the knowledge to use epiCentre for
collecting and reviewing ePPOC data.
The ePPOC dataset is described in detail in another document, the ePPOC Data Dictionary. The
purpose of this section is to give you an overview of the main elements and structure of the dataset,
so that you understand what you see in epiCentre, and where to go to find each element of
information.
As mentioned earlier, there are two types of data in in ePPOC – data supplied by the clinician and
patient reported outcomes. The data supplied by the clinician gives the dataset its structure and
describes the timing and nature of services provided to a patient. Patient reported outcomes are
collected at specific points in time and are focused on the patient’s experience of their pain. These
outcome measures include use of standardised tools such as the DASS21 and BPI.
Structure of ePPOC Data
The diagram below describes four levels of structural data in ePPOC. If you think of left to right as a
timeline it will help visualising how ePPOC data structure and collection works. We will begin with a
brief description of each data level, and follow that with a discussion of the protocol for collecting
patient reported outcomes. After that, there will be a more in depth discussion about which data
are collected at each level, and the relevant ‘business rules’.
Patient
Episode 1
Pathway 1A
Individual
Episode 2
Pathway 1B
Concurrent
Pathway 2A
Group
Service
Events
Levels in the ePPOC data set:
-
-
-
-
Patient: A patient is the person being treated. Once a patient is created in epiCentre,
Episodes, Pathways and Service Events may be added. epiCentre collects basic details about
a patient, some demographics and may also store contact details such as phone numbers,
email and physical address details if your facility does not record this information elsewhere.
Episode: An episode corresponds to the medical concept of an ‘episode of care’. In other
clinical contexts, an episode would usually apply to a hospital admission, or course of
treatments in a community clinic. In ePPOC, an episode represents a continuous period of
care for a patient in one pain management service.
One patient may have multiple episodes, reflecting the fact that a patient may undergo
treatment for a period of time, conclude that episode of care, and later be referred again for
further treatment for the same or another pain condition.
Pathway: Pathways sit within an episode and represent the period of time for which a
particular treatment strategy is in place, for example a group pain management program or
individual appointments with a psychologist and pain specialist. An episode may contain one
or more pathways. One important fact to note is that patient reported outcomes are
collected at the start and end of a pathway, with the intention of being able to evaluate the
effectiveness of each pathway in improving patient outcomes.
Service Event: Episodes and pathways represent a period of time, that is, they have start and
end dates. A service event simply captures a discrete service provided by the clinic to the
patient – an appointment with a physiotherapist for example. It is very likely in some
facilities that this (or similar) data is already collected in a hospital eMR system. If this is the
case, it may not be necessary to ‘double enter’ this information into epiCentre. More
information about this situation will be provided later.
Collecting Patient Reported Outcomes
The ePPOC data collection protocol states that patient reported outcomes should be collected at
specific points in time, related to the timing of episodes and pathways. This allows patient outcomes
to be assessed in relation to the start and end of an episode, and to different treatment strategies
within that episode.
Please note that we’ve included a particularly detailed description of a complex example. If you
already have a basic understanding of the ePPOC dataset and protocol you may want to skip this
section and move forward to ‘Collection Protocol: a more formal description’.
Episode Referral: 15/11/2013
Episode Start Date: 10/1/2014
Pathway Start Date: 10/1/2014
Pathway 1A
Individual
Pathway Review: 10/4/2014
Pathway Review: 10/7/14
Episode 1
Pathway End Date: 15/7/2014
Pathway Start Date: 1/8/2014
Pathway 1B
Concurrent
Group Start Date: 5/9/2014
Group End Date: 5/11/2014
Pathway End Date: 5/11/2014
(after episode)
Episode Follow up: 5/2/2015
Our purpose here is to give you enough understanding about ePPOC data structures to follow the
procedures for using epiCentre described later. The following diagram displays the key dates relevant
to ePPOC data structure and collection. We’ll begin with an example and then explain the protocol
and rules behind it more succinctly.
Referral and Initial Patient Questionnaire
In this example there is a single episode with two pathways. The patient was referred to the pain
clinic on 15/11/2013. At referral a few things occur:
-
-
The Patient is created in epiCentre based on information provided in the referral. Basic
details such as name, MRN and contact details are entered by a staff member into epiCentre.
epiCentre also stores other information about the patient which is collected in the ‘Initial
Patient Questionnaire’ (e.g. country of birth).
The first Episode is created for the patient. epiCentre will prompt for an ‘Episode Referral
Date’ and a ‘Referral Source’.
epiCentre will prompt the user to create an ‘Initial Patient Questionnaire’. This causes the
questionnaire to be created on REDCap and allows the user to forward the questionnaire to
the patient for completion (either by post or email).
The Initial Patient Questionnaire contains some demographic questions (e.g. indigenous status,
height, weight) and a series of tools which measure the patient’s experience of pain (e.g. health
service use, medication use, BPI, DASS21, PSEQ and PCS).
If the questionnaire is completed online in REDCap the responses can be synchronised back to
epiCentre. This means that if the patient completes the referral questionnaire online (or if
completed on paper, once the data is entered by a staff member) the responses will be stored in
epiCentre. Some of the responses to the initial patient questionnaire are stored on the patient
record, some on the episode record and some relate purely to that ‘moment in time’. Refer to the
ePPOC Data Dictionary for further detail about this.
One benefit of this process is that as long as the questionnaire is entered into REDCap one way or
another, these responses will be available to clinical staff at any time, particularly for their first
appointment at the clinic. The completed and scored questionnaire can be printed from epiCentre,
and also saved as PDF for inclusion in the patient electronic medical record.
Episode Start and Pathway Start
Although the episode is created at the time of referral, it is not regarded as ‘started’ until the patient
begins treatment or is assessed at the clinic. The start of an episode is defined as the first-face-toface contact with the patient at the clinic, for either assessment by a single clinician, a multidisciplinary team assessment, or for the start of treatment. In this example let’s consider a situation
where the facility does not begin an episode with an assessment, and the patient is going to begin a
series of individual services, alternating between appointments with a physiotherapist and a
psychiatrist.
The first appointment occurs on the 10/1/2014. This date is both the Episode Start Date and the
Pathway Start Date. In epiCentre a few things need to happen:
-
The Episode must be started. epiCentre will prompt for an ‘Episode Start Date’ and an
‘Episode Start Mode’. Starting an episode does not require a collection of patient reported
outcomes.
-
-
A Pathway must be started. epiCentre will prompt for a Pathway Start Date and a Pathway
Type. There are 4 pathway types: Individual, Group, Concurrent and One-off Intervention
(these will be described in detail later).
epiCentre will prompt the user to create a ‘Pathway Start’ questionnaire. Again, the
questionnaire is created on REDCap and although it contains less content than the initial
patient questionnaire, the process of completing it is the same as for the initial
questionnaire.
The questionnaire completed at pathway start (and all subsequent occasions) is a Follow up
questionnaire. This questionnaire does not repeat demographic questions, instead only capturing
data which are likely to have changed. The effect is to create a time series of responses to these
items, synchronised to milestones in the patient’s treatment.
Pathway Review
The data collection protocol requires that the follow-up patient questionnaire be completed every
three months during treatment. This is described as a ‘Pathway Review’ questionnaire. epiCentre
includes a survey scheduler which will notify you when a patient is due for a Pathway Review
questionnaire.
In our example, the patient is receiving individual treatments on an ‘Individual’ pathway for a little
over six months. Since the pathway was started on 10/1/2014, on the 10/4/2014 epiCentre will
prompt the user to send the patient a Pathway Review questionnaire.
epiCentre implements the agreed ePPOC protocol but is not intended to dictate an individual
facility’s clinical practice. Therefore, while epiCentre will prompt you to create questionnaires at the
appropriate milestones, it allows a number of responses to this reminder – including ‘cancelling’ that
particular questionnaire. These options will be detailed later in the documentation.
Pathway End
As illustrated on the diagram, technically a second pathway review for Pathway 1 is required on
10/7/14. In our example we will assume this ‘reminder’ was ignored because the clinician knew the
patients final treatment for that pathway was going to occur very soon.
At the time of the final treatment for Pathway 1 (15/7/2014) two things need to be done in
epiCentre:
-
The Pathway must be ended. epiCentre will simply prompt for a ‘Pathway End Date’.
epiCentre will prompt the user to create a ‘Pathway End’ questionnaire.
If all questionnaires are completed, epiCentre will have a comprehensive tracking of the patient’s
outcomes so far: Referral, Pathway Start, Pathway Review and Pathway End.
Concurrent Pathway Data Collection
As mentioned above, a pathway represents a period of time in which a particular treatment strategy
is being applied. After the series of treatments with a physiotherapist and psychiatrist, our example
patient’s treatment strategy was changed to ‘concurrent’. Concurrent refers to a treatment strategy
which involves a mix of individual and group pain management program(s). For example a patient
may attend a group pain management program one day a week for 10 weeks, interspersed with
individual appointments with a physiotherapist who addresses physical functioning.
The Pathway Start Date for this ‘concurrent’ pathway was 1/8/2014. As you will soon see, the
collection protocol states that questionnaires should be not be collected if the previous
questionnaire was completed less than one month earlier. When a user creates this pathway, they
will be shown a dialog asking if they want to create a Pathway Start questionnaire, but advising that
the protocol suggests they do not do this.
When a patient is on a ‘concurrent’ pathway, it may be desirable to measure the effectiveness of the
group program specifically. For this reason, you have the option of telling epiCentre when the group
program starts and ends. If you do this, the protocol requires that a Group Program Start and Group
Program End questionnaire be completed by the patient. As usual, this is subject to the one month
business rule, and the discretion of the facility.
In our example we have opted to send the Group Program Start questionnaire when the patient
begins their group interventions on 5/9/2014. The analysis/reporting possiblity that this creates is to
differentiate between the effectiveness of individual interventions versus group interventions.
The patient’s treatment ends on 5/11/2014. This date forms the ‘Pathway End Date’ and the ‘Group
Program End Date’. While the protocol allows for collection of separate questionnaires for Group
Program End, and Pathway End, it is clearly not appropriate in this case.
A Pathway End questionnaire is created.
End of the Episode
At the conclusion of Pathway 1B (or the second pathway), it is decided that the patient’s treatment
has come to an end. In epiCentre, the user needs to end the episode and enter the Episode End
Date, and Episode End Mode. There is no patient data collection corresponding to the end of the
episode because, it would generally occur at the same time as a Pathway End.
Episode Follow up
Similar to the Pathway Review, an Episode Follow Up Questionnaire is required three months after
the end of the episode. Again, the reminder for this is created by epiCentre’s survey scheduler – so
that as a user you do not have to search the system for episodes which ended three months ago!
Collection Protocol: a more formal description
You can probably see from this ‘story’ of a patient’s experience in a pain clinic the skeleton of a
protocol.
In epiCentre, the user interface and data collection protocols are ‘event’, or ‘milestone’ driven. This
means that epiCentre tries to make it convenient to perform ‘live’ data entry, by recording the
essential information about the event at the time the event occurs. Usually an ‘event’ only requires
the date and one or two other items to be recorded. Similarly, data collection of patient reported
outcomes is calibrated by these ‘milestones’. Here is a point by point description of the milestones in
ePPOC which require data collection
Milestone
Questionnaire
Type
Episode Referral
Episode Referral
Initial
Pathway Start
Pathway Start
Follow up
(every 3 months during pathway)
Pathway Review
Follow up
(if Concurrent Pathway - Group Program Start)
Group Program Start
Follow up
(if Concurrent Pathway - Group Program End)
Group Program End
Follow up
Pathway End
Pathway End
Follow up
Episode Followup
Follow up
Episode Start
Episode End
3 months after Episode End
epiCentre will prompt for each of these questionnaires when the appropriate milestone is created.
For each questionnaire the caveat in the protocol is that the previous questionnaire was completed
at least one month previously. epiCentre’s ‘Create Questionnaire’ screen will inform you of the type
and key dates of the most recent questionnaire sent and/or completed by the patient to allow an
easy decision about whether or not to send the questionnaire.
Each of these events is created in epiCentre by a simple button click on the ‘Medical History’ screen.
To minimise confusion, each event creation action will prompt you only for the relevant data, as seen
in the next table:
Milestone
Data Required
Create Patient: Patient name, MRN, D.O.B, and contact details
Patient Referral
Create Episode: Episode Referral Date, Episode Referral Source
Episode Start
Episode Start Date, Episode Start Mode
Pathway Start
Pathway Start Date, Pathway Type
Pathway Review questionnaires are created by the survey scheduler which has its own convenient
interface
(if Concurrent Pathway - Group Program Start)
Group Program Start Date
(if Concurrent Pathway - Group Program End)
Group Program End Date
Pathway End
Pathway End Date
Episode End
Episode End Date, Episode End Mode
Episode Follow up questionnaires are also created by the survey scheduler
ePPOC Data Items: Further Details
Patient
The Patient level is the top data level in ePPOC. A patient record is created when the patient is
referrred to a facility for the first time. In epiCentre, Patient data items can be grouped into 3
categories:
-
-
-
Clinician supplied mandatory items: MRN, Name, Gender and Date of Birth
o These must be supplied when a patient is created as the bare minimum amount of
information required to uniquely identify a patient.
o MRN, Gender and Date of Birth are part of the ePPOC data set and will be extracted
for analysis and reporting.
Clinician supplied optional items: Residential address and contact details (phone and email)
o These are optional as the same data may already be kept in eMR or some other
facility administration system.
o In practise it will be most convenient if at least phone and email are recorded so that
epiCentre can be an effective tool for communicating with patients regarding
questionnaires.
o Identifying data is not extracted and is stored in the epiCentre database using
encryption which prevents compromise of patient privacy.
Questionnaire sourced items: Demographics and communication items
o These are provided by the patient in the Initial Patient Questionnaire. After being
completed in REDCap the relevant responses from that questionnaire are reflected
on the patient record.
Episode
An episode is defined as a continuous period of care for a patient in one pain management service
As with the patient record, the episode record contains a combination of data items provided by
both the clinician and in the patient questionnaire.
Below is a list of the episode data items, grouped by the event at which they are required to be
entered.
-
Episode Referral: an episode is created when a patient is referred to a facility. The data
items relevant to this milestone are Episode Referral Date, Referral Source and whether or
not the episode is for the management of cancer pain.
epiCentre also provides fields for information about compensation cases. These include
compensation case type and insurer/claim details. The insurer and claim details are
considered identifiable and are not part of the data extract.
-
-
-
Episode Start: an episode is considered to start when one of two events occur:
o When a single or multi-disciplinary team assessment is performed
o When treatment begins (if a pre-treatment assessment is not performed).
Data items relevant to Episode Start are Episode Start Date and Episode Start Mode,
to capture which of the above events was the reason for starting the episode.
Episode End: episode end occurs when the patient’s treatment with the clinic is completed.
The required data items are Episode End Date and Episode End Mode which is a selection of
possible values including:
o Pain management service treatment completed
o Referral to another pain management service
o Did not complete treatment
o Died
o Primary treatment completed (with ongoing review)
Questionnaire sourced items: ‘Pain duration’, ‘Cause of pain’ and a list of tick boxes for comorbidities. These are provided by the patient in the Initial Patient Questionnaire.
Business Rules for Episodes
- Only one episode may be ‘active’ at a time for each Patient.
- Episodes do not have to be contiguous. A patient may complete treatment with a service,
only to be referred again some time later.
Pathway
A pathway represents a period of time during which a particular treatment strategy is in place. There
are four pathway types:
-
Individual appointments
Group pain management program
Concurrent (group and individual appointments)
One-off intervention
A pathway is started when treatment begins on that strategy and ends when treatment is concluded.
A possible scenario is that a patient begins with individual appointments, and during the course of
these it is determined that a group program would also be appropriate. In this case there are two
choices:
-
end the ‘individual’ pathway and begin a ‘group’ pathway
change the type of the ‘individual’ pathway to ‘concurrent’ and record the group program
start date
In terms of data entry, pathways are very simple. When a pathway is started, the user records the
Pathway Start Date and the Pathway Type. When the pathway is ended, the user records the
Pathway End Date. If the pathway type is concurrent, the group program start date and group
program end date should also be recorded. epiCentre will prompt for the required data items when
the appropriate milestone button is clicked on the ‘medical history’ screen.
The purpose of the pathway concept is to provide start and end points for collection of patient
reported outcomes. The changes in outcomes between pathway start and end (and, if relevant,
group program start and end) will be one source of ePPOC data analysis and reporting.
Business Rules for Pathways
- Only one pathway may be active at any time.
-
Pathway start and end dates must sit within the start and end date of their ‘parent’ episode.
Pathways do not have to be contiguous. There is likely to be a time gap between the end of
one pathway and the start of the next pathway.
Service Event
A service event represents a particular service provided to a patient in the course of their treatment
by a facility. epiCentre requires four data items for a service event:
-
-
Date of service: the date the service was provided
Service type: a list of potential services.
Telehealth (yes/no): because many of the service types may be provided via telehealth, this
is provided as a separate ‘flag’. For example you could have ‘Service Type: Individual
appointment with medical practitioner’, ‘Telehealth: Yes’ to represent a phone or video
conference consultation with a patient.
Duration: captures the total amount of time spent with the patient by all practitioners
involved in the service.
As mentioned earlier, Service Events may already be captured in the eMR or other data entry system
in a hospital environment. It is not necessary to double enter this information if you are entering it
elsewhere. However, ePPOC uses a particular codeset for ‘Service Type’ defined in the ePPOC Data
Dictionary, and the definition for the ‘Service Event’ extract. If the data is entered in another system,
it will be necessary for your facility to provide an extract using the Service Type codeset and meeting
the specifications of the ePPOC data dictionary.
Conclusion
This concludes our section on the ePPOC data set and collection protocol. Details on how to enter
this information in epiCentre are provided in the ‘Using epiCentre’ section of this User Manual. The
next section describes how to create and manage questionnaires.
Creating and Managing Questionnaires
Options when prompted to create a questionnaire
The protocol for when patient-completed questionnaires are required has been described in detail
earlier in this manual. However, whenever an event/milestone occurs which epiCentre determines
requires a questionnaire, you as a user have options about how to respond to that prompt.
Whenever a questionnaire is required, the above dialog will be displayed.
Note that epiCentre tells you the following information:
-
Type of questionnaire to be created: in the above example, ‘This action will create an ad-hoc
questionnaire’.
Last questionnaire completed: the date on which a questionnaire was last completed by a
patient (or by a clinician on behalf of a patient).
Last questionnaire requested: the date on which a questionnaire was last created by
epiCentre.
Sent Status and Completed Status: these will be explained shortly
For example the patient may have completed the ‘Episode Referral’ questionnaire on 1/4/2013, and
a Pathway Start questionnaire was requested on 5/7/2013. This questionnaire was ‘sent’ to patient
on that date, but has not been completed. In this case the Sent Status will be ‘Sent’ and the
Completed Status will be ‘Awaiting Response’.
Action
Whenever a questionnaire is requested by epiCentre (according to the protocol) you have four
options (as seen in the ‘Action’ section of the above dialog):
-
Send Now: this will create the questionnaire on REDCap, send the requesting user (not the
patient) an email containing a ‘hyper-link’ which can be used to complete the questionnaire.
This ‘link email’ can be forwarded to the patient’s email address. There are a few ways to
forward this link to the patient which will be detailed later.
-
-
-
o This will set the ‘Sent Status’ of the questionnaire to ‘Sent’.
Schedule for later: if you are sure you want this questionnaire to be sent, but do not have
time to forward the email or deal with the issue in general, you can use the action ‘Schedule
for later’. This means the questionnaire will not be generated at this moment, but it will go
into a queue to be dealt with later.
o This will set the ‘Sent Status’ of the questionnaire to ‘Scheduled’.
Ask me Later: at the time you trigger an action which requires a questionnaire you may not
have time to consider whether or not to send the questionnaire. For example, you may just
want to ‘Start Pathway’ for a set of patients and deal with whether or not to send the
questionnaires at a later time. In this case, you can usee the ‘ask me later’ option.
o This will set the ‘Sent Status’ of the questionnaire to ‘Required’.
Cancel this questionnaire: you may be certain that you do not want to send a questionnaire
at this time. For example, it may only be 2 weeks since the previous questionnaire was
completed. In this case use this option.
o This will set the ‘Sent Status’ of the questionnaire to ‘Cancelled’.
Sent Status
From this list of possible actions you can see there are four possible values for sent status:
-
Sent: means the questionnaire has been created on REDCap
Scheduled: means it has been determined that the questionnaire should be sent, but it has
not yet been sent.
Required: means that the decision about whether or not the questionnaire should be sent
was deferred for later.
Cancelled: means that it was decided that the questionnaire should not be sent.
Questionnaire Mode
The other piece of information epiCentre asks for when a questionnaire is created is ‘How do you
want to send your questionnaire’. There are 4 possible responses to this question:
-
-
Post: you intend to post a printed copy of the questionnaire to the patient. They will
complete it and return it. A clinic staff member will enter the responses on REDCap.
Email: you intend to email the patient a link to the questionnaire for them to complete
online. The patient will complete the questionnaire online and the results will be
synchronised back to epiCentre.
Telephone: you intend to conduct a phone interview with the patient and complete the
questionnaire in REDCap during or after the interview.
In Clinic: you are creating the questionnaire for the patient to complete in the clinic.
REDCap’s questionnaires will work on a web browser on an iPad or in clinic terminal.
The answer to this question does not affect how epiCentre or REDCap work, but is provided for your
information. When you have a list of outstanding questionnaires to follow up it is useful to have
information about how they were originally delivered to the patient.
Forwarding a questionnaire to a patient
After you have chosen the ‘Send Now’ option on the ‘Create Questionnaire’ screen, you will need to
inform the patient. How you do this depends on the ‘Questionnaire Mode’. Regardless of
questionnaire mode there are two things to note:
-
You will receive an email containing a link to the questionnaire
You can use the ‘Questionnaire Details’ screen as a convenient way to view the patient
details and to forward the questionnaire to the patient. To view this screen:
o Go to the ‘Questionnaires’ or ‘Patient Questionnaires’ screen.
o Select the questionnaire whose sent status is ‘Sent’ and whose ‘Completed Status’ is
anything other than ‘Received’ or ‘Completed’.
o Click the ‘Edit’ icon.
o You will see the ‘Questionnaire Details’ screen as per the following screen shot
Email
If you are going to send the questionnaire to the patient by email this screen contains the standard
text of the email, the link to the questionnaire and the patient’s name and email address. You can
click the ‘Copy’ links and paste these into an email to send to the patient. If you are sending the
email immediately it may be more convenient to simply forward the email sent to you by REDCap.
Post
In this case, you will need to print a copy of the relevant questionnaire and post it to the patient. You
can print the questionnaire by clicking the ‘Initial Questionnaire’ or ‘Follow-up Questionnaire’
buttons on the Questionnaire list screen, which will open the PDF version of the questionnaire.
When the completed questionnaire is returned, you can click the ‘Link’ from the ‘Questionnaire
details’ screen which will open the questionnaire in your web browser. You can then enter the
information from the printed questionnaire.
Telephone
During a phone interview you may to choose to first note the responses on the paper form, or do the
data entry directly. You can click on the ‘Link’ on the ‘Questionnaire Details’ screen to open the
questionnaire in your web browser. You can then use this to enter the information from your notes
or during the interview.
In clinic
If you are using an iPad or some other device to allow a patient to complete the questionnaire in
clinic, you will need to manually enter the URL provided in the questionnaire details screen e.g.
https://eppoc.ahsri.uow.edu.au/redcap/surveys/s=?6pJbe
After completing the questionnaire online
Once the questionnaire has been completed online, clicking ‘Refresh Questionnaires’ will synchronise
the data between REDCap and epiCentre, allowing you to view and/or print the questionnaire
responses in epiCentre.
After a questionnaire has been sent: Completed Status
Separate from the consideration of whether or not the questionnaire has been sent, is whether or
not the questionnaire has been completed. Completion status is only relevant for questionnaires
whose sent status is ‘Sent’. Completion status is used to inform you whether or not the
questionnaire has been completed AND to provide a way for you to follow up on questionnaires.
The following flow chart explains how completion status works:
Sent Status: Sent
Any status in the
followup workflow
Patient or Clinician
completes questionnaire in REDCap
Awaiting Response
Any status in the
followup workflow
User Cancels the questionnaire or
Subsequent questionnaire is created
Cancelled
Received
2 weeks without response
Clinician completes ‘medicine’ section
of received questionnaire
Expired
Completed
User records follow up action
Re-issused awaiting
response
2 weeks without response
Not received
Expiration and follow-up of questionnaires
When a questionnaire is created, it is available to be completed online by either a patient or clinician
at any time. If the patient ignores the email or the paper questionnaire which is sent to them, the
questionnaire will require follow-up. epiCentre’s survey scheduler reviews the sent dates and status
of all questionnaires to progress them through a workflow as displayed in the above flow chart. For
the first 2 weeks, the questionnaire has a status of ‘Awaiting Response’.
Once the current date is > 2 weeks from the ‘Generation Date’ for a given questionnaire, its status is
changed to ‘Expired’. From there it is up to a user to follow-up, or record a follow-up action. The
user may perform the ‘re-issue’ follow-up action which will set the status to ‘Re-issued awaiting
response’. After a questionnaire has been at a status of ‘Re-issued awaiting response’ for 2 weeks,
the scheduler will set its status to ‘Not Received’.
Once a questionnaire has reached a status of ‘Not Received’, epiCentre will no longer automatically
try to synchronise the responses of that questionnaire. A user can still try to synchronise the results
of such a questionnaire by going to the specific patient’s ‘Patient Questionnaire’ screen and use the
‘Refresh Questionnaires’ button.
Receipt and completion of a questionnaire
If a clinician or patient completes the questionnaire in REDCap, the responses will be synchronised
back to epiCentre. This will cause the ‘Completion Status’ to be set to ‘Received’. One final data
entry step is required by the clinician. This is to fill out the ‘Complete Questionnaire’ screen which
asks the user to review the list of medicines recorded by the patient and record details about
analgesic and opioid medications. After this final data entry is completed, the status of the
questionnaire is set to ‘Completed’.
Cancelling a questionnaire
At any point in the workflow of awaiting response and follow up of a questionnaire, the
questionnaire can be manually cancelled by the user. This may be done because the user
accidentally generated the questionnaire in the first place, or because you are certain the
questionnaire will not be completed by the patient and want to get it out of an ‘awaiting response’
or follow-up queue.
The second event that may cause a questionnaire to be cancelled is the creation of a subsequent
questionnaire. Only one questionnaire may be outstanding for a patient at any given time. For
example, if the patient has not completed the ‘Pathway Start’ questionnaire by the time the
‘Pathway End’ questionnaire is required, epiCentre will create the Pathway End questionnaire and
automatically cancel the outstanding Pathway Start questionnaire.
Tracking and following up questionnaires
There are two reasons you will need to ‘follow-up’ on questionnaires.
-
-
Following up on questionnaires which are required but have not yet been sent. That is,
were marked as ‘schedule for later’ (status: Scheduled) or ‘ask me later’ (status: Required).
The action you will need to take here is to actually send the questionnaire.
Following up on questionnaires which have been sent, but a response has not yet been
received.
The ‘Questionnaires’ and ‘Patient Questionnaires’ screens in epiCentre provide an easy to use
interface for following up questionnaires at any status. Here is a screenshot of that screen:
When you first view the screen, it will show a list of all questionnaires in the system, regardless of
sent or scheduled status. Under the header bar, you see a list of boxes with labels in them,
representing each case for questionnaire follow up.
We will now explain each case, when it occurs, and what you can do in that case.
Required (Sent Status: Required)
How do questionnaires arrive at here? This will show you a list of all the Questionnaires where the
option ‘Ask me later’ was selected as the action in the ‘Create Questionnaire’ screen.
Why: This indicates the user who originally triggered the event for creating the questionnaire was
not sure whether or not the questionnaire should be sent.
What should you do? You can click the ‘Issue/re-issue’ button, which will show the ‘Create
Questionnaire’ screen again, allowing you to schedule, send or cancel the questionnaire.
Scheduled (Sent Status: Scheduled)
How do questionnaires arrive here? This will show you a list of all the Questionnaires where the
option ‘Schedule for later’ was selected as the action in the ‘Create Questionnaire’ screen.
Why: This indicates the user who originally triggered the event for creating the questionnaire was
sure they wanted to send the questionnaire but did not have time to follow through (by printing and
posting the questionnaire, or forwarding the email link).
What should you do? You can click the ‘Issue/re-issue’ button, which will show the ‘Create
Questionnaire’ screen again, allowing you to send or cancel the questionnaire.
Awaiting Response (Sent Status: Sent, Completion Status: Awaiting
response)
How do questionnaires arrive here? This is a list of questionnaires which have been sent, but
responses have not been received. Refer to the flowchart earlier for a full view of this workflow.
Questionnaires will remain in this category for 2 weeks after the date which they are sent.
What should you do? This is where you will go if, as a clinician, you want to do the data entry for a
questionnaire based on a telephone interview or a postal questionnaire, provided it has been less
than 2 weeks since you originally sent the questionnaire.
Requires Follow-up (Sent Status: Sent, Completion Status: Expired)
How do questionnaires arrive here? This is a list of questionnaires which were sent more than 2
weeks ago, a response has not been received and no follow-up action has been performed.
What should you do?
This is where you will go if you want to find a list of questionnaires which may require follow-up (e.g.
a follow-up email or phone call) to remind the patient about the questionnaire. After doing the work
of follow-up, you should use the ‘Issue/Re-issue’ button and choose ‘Send Now’. This will set the
status the questionnaire to ’Reissued Awaiting Response’.
If the questionnaire is not completed after two more weeks, the sent status will be set to ‘Not
Received’. There is not a specific category for viewing ‘Not Received’ questionnaires because
according to the protocol they are basically ‘dead’. The logic is that if a patient has not completed a
questionnaire in the first month of receiving it, it is very unlikely they will complete it. Secondly,
should they complete it, say 5 weeks after it was originally sent, the responses cannot be very
strongly associated with the milestone (e.g. Pathway Start) which triggered the questionnaire in the
first place.
Received (Completion Status: Received)
How do questionnaires arrive here? This is a list of questionnaires which have been completed
online by either the patient or a clinician. The responses have been synchronised back to epiCentre
and are available for you to view.
What should you do?
You will need to perform the final step, which is to click the ‘Edit’ button and answer the questions
on the ‘Complete Questionnaire’ screen. This screen displays the medication list as provided in the
patient questionnaire, and asks the user to answer a few questions about analgesic and opioid
medications, which were too technical for a patient questionnaire. After completing this screen, the
completion status of the questionnaire will be upgraded to ‘Completed’.
You can also click the ‘View’ icon to view a report containing the summary page and detailed
responses to the questionnaires, though it is recommended that you fill out the ‘Complete
Questionnaire’ screen first.
Completed (Completion Status: Completed)
How do questionnaires arrive here? This is a list of questionnaires which have been completed by
the patient or clinician online, synchronised back to epiCentre and had the ‘Complete Questionnaire’
screen filled out as per the previous step.
What should you do?
There is nothing that you need to do with this list, but it is a convenient way of viewing the
completed questionnaires. You can click the ‘View’ icon to view a report containing the summary
page and detailed responses to the questionnaires. This report can be saved as a PDF file to be
included in the patient’s eMR, viewed for reference during a consultation or printed.
Final Thoughts
Management of patient data and questionnaires in epiCentre has been designed to be as flexible and
easy as possible. Despite this, some effort will be required by users to properly follow up on
questionnaires. A few regular procedures will need to be implemented in order to use epiCentre
effectively. These include:
-
Timely data entry for creation of patients, episodes and pathways.
Reviewing and sending of questionnaires which have been marked as ‘schedule for later’ and
‘ask me later’.
Review and follow-up of questionnaires in the category of ‘Requires Follow-up’
Filling out of the ‘Complete Questionnaire’ screen for questionnaires in the category of
‘Received’.
We hope this part of the documentation leaves you with a good understanding of the ePPOC data
set, how it is used in epiCentre and how questionnaires work.
The next section of the documentation will explain the user interface of epiCentre in detail.