FAQs

Here you will find answers to many frequently asked questions that have been raised by services taking part in the project. These cover the following areas and are grouped under each heading. If you cannot find the answer to your question below, please get in touch with us.

  1. General Queries
  2. Events & Clinician Training
  3. The Current View Tool
  4. Data Collection 
  5. Assessment and Outcome Measures
  6. Data Submission
  7. Data Sharing and Consent
  8. Compatible IT Systems
  9. Feedback for Sites
  10. Data Analysis
  11. Cluster Development

1. General Queries

Q: What are the aims of the pilot project?

The Key Aims of the project are to:

  • Capture a more complete picture of the work done by clinicians (and therefore its cost)
  • To inform the development of a system by which payment for CAMHS is determined according to need

Our Key Questions are:

  • Can we predict required resource usage from assessment information? (i.e. can we cluster, and if so, what influences those clusters)
  • Can we identify groups of cases that need similar amounts of resource overall?
  • How much input is required by whom to get what outcome?

Q: What is a pilot project?

A pilot is a preliminary study. The project is not about rolling out PbR in CAMHS, but is looking at how best payment by results can be implemented in CAMHS. The first stage of this is gathering sufficient information about cases seen in CAMHS, the resources they use, and the outcomes they have, to inform the development of groups for clustering.

Q: How long is the pilot project going to last for?

The pilot phase of the project is currently expected to run for 18 months, to enable sufficient data to be collected. This means the data collection at pilot sites will be likely to last until summer 2014. The overall project will report at the end of March 2015.

Q: How does the project address the issue of transition to Adult mental health services (AMHS)?

We are committed to helping ensure appropriate and smooth transition between CAMHS and AMHS, and are aware that currently this is frequently lacking nationally. We are also equally committed to facilitating appropriate and smooth transition between child mental health and child physical health, learning disability, forensic and social care services. We anticipate that our assessment and future clustering model will be applicable to those clinical services that offer input to adolescent/adult transitional services, e.g. early onset psychosis teams, learning disability services, or other late teen to early adulthood services. If such specialist services considered that their population would be more appropriately served by the use of AMH clusters however, then our suggestion is that the service would be able to make a decision in collaboration with their commissioners as to which clustering framework makes most sense.

Q: Why is this approach different to the proposal for adults with mental health problems?

The CAMHS PbR approach has been designed to meet the needs of the CAMHS user population, which differs in important ways from the Adult MH population. The needs of children do not easily map onto the service configuration implicit in the Adult MH PbR cluster model. For example, developing clinically meaningful clusters for primary school age children with emotional, behavioural or neuro-developmental disorders is unlikely to map in any clear way onto AMH clusters.

Q: What is IAPT?

Improving Access to Psychological Therapies (IAPT) is a national NHS programme offering NICE (National Institute of Health & Clinical Excellence) approved interventions for people with mental health difficulties. See the IAPT site for more information.

Q: What is CYP IAPT?

The Children and Young People’s IAPT project is a service transformation project for existing CAMHS, which seeks to improve the quality of care by training clinicians on evidence based treatments, on service development and leadership, and through the introduction of session-by-session routine outcome monitoring. It differs from adult IAPT as it is not about setting up new services, but working to transform existing ones. See the CYP IAPT site for more information.

Q: We are a team/service interested in taking part in the PbR pilot, is it too late?

We have limited capacity in the project and are already working with 22 sites nationally, representing a broad range of services. This means that it is very unlikely we can take on any further sites. However please contact us if you would like to register your interest for being involved in the CAMHS PbR project in the future.

Q: How easy do you think it will be to learn from other sites? For example, CYP IAPT sites are ahead of us on this and would be good to get in touch with them.

With your permission, we will be sharing learning through forums and other avenues including networking events. At the induction events in September 2012, service and data leads also agreed to share email addresses and these have been shared. If you have not received these contact details then you can contact us to request them. Please also see our Events Calendar for upcoming events.

Q: Do trusts have to approach ethics for this project?

No services have had to approach ethics as this is seen as part of routine care and service development, and we have put forward no specific research proposal at this stage. However it is up to your service whether you think this is necessary.

Q: Can forensic and super specialist services be involved?

Yes, we are keen for specialist service involvement so we can model what happens to these CYP, however we may need to liaise directly with you on this.

Q: Will you be differentiating between the different Tiers (2-4)?

The pilot will differentiate between all tiers and capture information about all levels. We have services involved in the pilot that cover all tiers.

Q: Are you including data from 18-21 year olds in the pilot?

Yes, we are particularly keen to include data from this group as one of our key questions is around the resources used by those cases that transition to adult services.

Q: What will be the real costs of implementing what is required for the pilot?

We are aware there will be costs involved for pilot sites in updating their IT systems. This is why our dataset links (and is compatible) with other mandated requirements (CAMHS minimum dataset) and national iniatives (CYP IAPT, CORC).

Q: Will the data from this project be used for performance monitoring?

We do not have control over how your services will use the data collected for this project. We will not be looking at efficacy in this project but may focus on costs involved by professional groupings (i.e., in trying to understand the average the cost for CYP with OCD by looking at the amount of input by professionals involved, with reference to professional staff grouping).

Q: How will consultation/supervision services provided by CAMHS for non CAMHS cases be funded when tariffs are introduced?

This is a question which is out of scope for the current phase of the project, however we are aware of this issue and will be feeding this back to the Department of Health.

Q: Are overheads being taken into account as part of the project?

Considering the cost of overheads is not part of the current phase of the project. Any funding system used for CAMHS in the future will however consider overheads. The purpose of this project at this stage is to identify clusters based on the resources needed by children that enters CAMHS. This is based on the resources they use, counted in terms of clinical time, to reach a good outcome.

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2. Events & Clinician Training

Q: Are slides and materials from the Induction Events available?

These are available on our Induction Events page. You can also refer to our Useful Links and Documents page.

Q: Where can I find materials from the Data Events that took place in Spring 2013?

These are available on our Event Resources page.

Q: What is going to happen in the clinician training?

Our training focuses primarily on how to fill in the Current View tool. There will be a brief introduction to the aims and methods of the pilot and then the majority of the session will involve discussion around the Current View tool and practice of filling in the tool using worked examples.

Q: What is in this project for clinicians?

Engaging clinicians will be very important. We will hope to get across at the training sessions that the data from this pilot may be central in shaping CAMHS going forward and should contribute to ensuring that CYP receive sufficient levels of support to reach successful outcome wherever possible.

Q: Who needs to attend the clinician training event?

The training is aimed at all staff who will be involved in assessing children and young people. It may also be useful for key administration staff to attend if they will be involved in entering the information onto patient databases.

Q: How do you need the room set up for your training events?

We will need you to ensure that the venue provides the following:

  • Access to a projector and screen
  • Access to a flipchart
  • Sufficient chairs for all your attendees plus our trainers
  • Chairs set up in cabaret or classroom/lecture style

Q: We’ve had some training from the team but would like more, is this possible?

Unfortunately we do not have sufficient resources to offer further training at the current time. However online training modules in using the Current View will be available online from March 2013. We may also undertake further face-to-face training later on in the pilot.

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3. The Current View Tool

The answers to many of your questions about the Current View tool will be answered in our Current View Completion guide on the Pilot Site Training Materials page. Other questions are addressed below.

Q: When do I fill in the Current View?

As a minimum, we require clinicians to complete the Current View tool immediately following whatever their organisation considers to be “first contact”. The Current View tool also needs to be checked to ensure it is up to date at formal review periods and case closure. We also encourage regular updating of the Current View as per the guidelines in the Current View Completion Guide on the Pilot Site Training Materials page.

Q: When do I update the Current View?

The tool should be updated:

  1. Whenever new information comes to light (changed situation).
  2. When your understanding of a case has changed as a result of further reflection and/or team discussion (changed understanding).

The reason for updating the  tool should be logged on the patient database.

We strongly encourage you to complete updated Current View tools as often as necessary as these updates will be invaluable in better understanding how long it takes for clinicians to have sufficient information about a CYP to make accurate and effective treatment decisions.

Q: I work for a Looked After Children service and there is a lot of consultation work that goes on before we see the child or young person. When do I first fill in the form?

This should be decided locally. If there is significant consultation work that takes place prior to seeing the child, we would encourage this to be filled in during the consultation period. For example, there may be lots of information on the referral letter and some completed questionnaires. This would be sufficient to fill in your first Current View. This should be updated once you have seen the child however.

Q: Do we just fill in the problems that are the reason for referral, or do we indicate other problems that may be a part of the CYP’s profile but are not the reason they are accessing the service?

If the problem is having an impact, or causing distress to either the child or the family then it should still be recorded. If at the current time it is not having an impact on the CYP or family, then it should not be indicated as present.

Q: Do I fill in a Current View for a child or young person that is deemed an inappropriate referral at first assessment?

Yes, we are asking that you do this wherever possible. For referrals deemed inappropriate at or after first assessment, we would like you to fill in the Current View, record evidence of the assessment appointment and any other activities that took place, and the reason for case closure (e.g. Transferred to other healthcare provider). However if the referral is deemed inappropriate earlier, i.e. when the referral is received, we would not expect this information to be collected.

Q: Do I fill in a Current View if the first assessment is done on the telephone?

Yes, all information should be recorded as it would be for a face to face appointment. You may have less information available to you to fill in the Current View, but you can come back and update this at a later point.

Q: If clinicians rate self-harm (item 10 on the problem description list) as “Not Known” then wouldn’t they be asked why they haven’t done a risk assessment?

Please be aware that this tool does not replace or constitute an alternative to the risk assessment that you are required to do as part of your work. You must ensure you do this separately.

Q: What if more than one clinician is involved in the “first contact” with a CYP, who fills in the Current View tool?

If there is more than one person present at first contact, the lead clinician (e.g. key worker or care-coordinator) should fill out the Current View tool. If there is no lead clinician present, then you must decide on one person to fill this in; or you may choose to fill it in as a team. Your service may wish to specify the protocol in this case. Please speak to your service lead if you have any concerns about this. It is important however that we do not have multiple copies of the form completed by different clinicians for one case at one time point.

Q: What should I do if a patient DNAs the first appointment?

If the patient DNAs, you must still ensure that you have opened a ‘period of contact’ for the case and entered all demographic information (e.g. DOB, ethnicity) that you have. You will then need to ensure you log the appointment as a DNA. If you feel you have enough information from the referral to fill in a Current View form, then this is encouraged, however if not you should fill in the Current View following the first appointment that they do attend.

Q: When we come back to update the Current View form, will we be able to see the previous forms we have completed?

This should be possible, however it will depend on which IT system your service uses to capture this information.

Q: How does the Current View tool link with the ICD-10 and making diagnoses of problems?

The Current View tool is not a diagnostic tool and should not be used in this way. The diagnostic names of problem descriptions are provided to aid those clinicians that prefer to use diagnostic categories when thinking about a CYP’s difficulties.

Q: When filling in the problem descriptions,  does impact and specifically “distress” refer to the family or the child?

“Impact”, which includes distress, can refer to either the family or the child’s level of distress.

Q: What identifier should we use if we don’t have a child’s NHS ID at first referral (e.g. from a self-referral?)

You can also use a local service ID and service allocated patient ID, and update the NHS number at a later date.

Q: How can we record a presenting problem that doesn’t fit under any of the 30 problem descriptions provided?

The 30 problem descriptions are not exhaustive, and we are aware that there may be some presenting problems that don’t fit neatly into this list. In these cases, the information may covered by the complexity or contextual factors. Otherwise, please use your clinical judgement to make a “best fit” to the nearest problem descriptor or combination of problem descriptors.

Q: How can I record a complexity factor that is not on the form? Some examples are a young mum, or someone from the travelling community.

The complexity factors selected are not intended to represent the wealth of factors that increase complexity of cases seen in CAMHS. The 14 factors selected are those that are, based on expert consulation and some analysis of retrospective data, considered most likely to increase resource use.

With regards to the examples given:

1. A young mum could be recorded under “young carer” as this includes caring for any family member

2. Seeing someone from the travelling community cannot be specifically captured on the form, but the possible increase in resource use as a result of this, could be rated under the following contexctual factors (examples for illustration only)

  • ‘Community issues’ might cover issues around travellers being a marginalised group
  • ‘Home issues’ could be used to record multiple moves of home (or any other issue to do with the physical circumstances of home life that appears to be impacting on the young person)
  • ‘School issues’ could cover a multiple moves of school or inadequate school provision due to the travelling lifestyle
  • ‘Service engagement issues’ could cover difficultly locating medical records due to the family moving around a lot

Q: Why is “Not Known” an option?

We need clinicians to have this option as there will be aspects of a presentation that they don’t know about initially but intend to assess further at future meetings. Additionally we would like to be able to see how information comes in over time.

Q: Is the Current ViewTool being used as a rating scale?

Not currently. It is being used to gather data to help us better understand how the information provided on the form relates to resource use and outcomes.

Q: How does the Current View tool capture complexity around cultural background, e.g. language barriers/ use of interpreters etc.?

These will be captured under the Service Engagement contextual problem. This category is intended to represent the additional resource related to difficulties engaging with or accessing the service for any reason.

Q: Are we required to complete the Current View for all urgent referrals to CAMHS staff including those that are emergency and out of hours?

Yes, Current Views should be completed for all referrals as soon as possible including those referrals that are out of hours/emergency. It is important that only one member of staff does this however, so it would be a good idea to decide on a local procedure for who this should be following an emergency/out of hours referral, and when this should be done.

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4. Data Collection

Q: What data do we need to collect for the pilot project?

Please go to our Dataset Requirements page all the information you need to know about what data is essential for the PbR Pilot. For the project, we are drawing on the CYP IAPT data specification to collect all the information we require. We have also produced a Data Collection Guidance Document available on the Pilot Site Training Materials Page, which can be used to help clinicians understand the areas of information we are asking to be collected for the project.

Q: Where can I find paper forms that clinicians can use to collect all the required information for the project?

These can be found in the Practitioner Resources (Practitioner Forms) section (pages 87-96) of the Tracking Outcomes Resource Pack on the CYP IAPT website. This includes The Current View, Case Closure Form, Event/Session recording forms, information about Interventions and Medication and the Goal progress chart.

Q: What data do I collect for a child or young person that is deemed an inappropriate referral at first assessment?

For referrals deemed inappropriate at or after first assessment, we would like you to fill in the Current View, record evidence of the assessment appointment and any other activities that took place, and the reason for case closure (e.g. Transferred to other healthcare provider). However if the referral is deemed inappropriate earlier, i.e. when the referral is received, we would not expect this information to be collected.

Q: Are we collecting data about the work done by administrative staff?

No, for the PbR project we do not require information about administrative staff’s duties, as these will eventually be costed as part of service’s overheads. We are only looking to record the resource each case takes up with regards clinician/practitioner time.

Q: What is my Service ID?

All sites should have been allocated a unique Service ID to allow submission through the CORCNexus system. If you need this ID and don’t have this information, please contact corc@meganexus.com

Q: What is my Team ID?

Your Team ID is something that your service needs to assign locally. The PbR team do not have or decide that information. Please speak to your Service or Data Lead to request this information. If you don’t know who your service or data lead are, please contact us.

Q: What is my “Team Type”?

The CYP IAPT data specification outlines the different Team Types. These can be found on the input variables sheet of the version 2 Data set on the CYP IAPT website. For ease, these are also copied below.

Multidisciplinary Generic/Locality CAMHS Team Paediatric Liaison
Single Discipline Generic/ Focus Locality CAMHS Team Young Offenders
Adolescent ADHD
Education Other
Psychiatry Special Tier 4 CAMHS Team
Psychology In-Patient Unit
Infant Mental Health Service Day-Patient Unit
Targeted CAMHS Teams Intensive Treatment Unit
Social Services / Looked After Children Other Non-CAMHS Team
Moderate / Severe Learning Disability Missing

Q: My team type is not on the list above, what do I do?

The list of team types is taken from the CAMHS Minimum Dataset, to ensure consistency. However we have received some feedback to indicate that certain team types are not sufficiently represented. Please make a “best fit” if you are able, and contact us to let us know.

  • HDUs (High Dependency Units) should be recorded under Intensive Treatment Units. The team are aware of this issue.

Q: What are the different types of practitioners that are listed in the CYP IAPT data specification?

The CYP IAPT data specification outlines the different types of professionals. These can be found on the input variables sheet of the version 2 Data set on the CYP IAPT website. For ease, these are also copied below.

Nursing professionals Social work professionals
Medical professionals Other therapy qualified professionals
Psychology professionals Creative therapy professionals
Primary mental health professionals Educational psychology professionals
Child and adolescent psychotherapists Other education professionals
Family therapy professionals Other qualified staff
Counselling professionals Other unqualified/in-training staff
Occupational therapy professionals

Q: Why is the CYP-IAPT data specification code different to the code for national mapping data?

The codes should be the same. If you do notice any differences, please get in touch with us.

Q: Is there alignment with the CYP IAPT and CAMHS Minimum dataset that is mandated from 2013?

Yes, there should be no incompatibility.

Q: Are the IAPT data specifications consistent with the NHS data dictionary?

Yes these are consistent where the specifications are the same.

Q: Why has the CYP IAPT dataset used its own form of consultation medium (event contact medium) when there is a standard set of national codes for this?

The national codes (“Consultation medium used”) miss out certain variables that the team felt were useful to help answer the pilot’s key questions. Two examples are, in anticipation of future developments, the addition of “web” and “mail” type mediums. The project team also felt “video link” was a more useful and accurate description than ”telemedicine web camera”. By creating a new  set of codes instead of adding levels to existing codes, we avoid potential clashes of numbers if the NHS dictionary is updated in future.

Q: Will the dataset support Scottish GP practices, Scottish NHS numbers and Non-English local authority codes? 

There is no validation currently on GP practice codes or local authority numbers so this will not present a problem. Scottish NHS numbers (CHI numbers) are validated and will be supported by the dataset.

Q: What are the derived variables for on the CYP IAPT data set? I cannot see these on the File Output Specification.

The derived variables sheet is for reference only, to tell you what we’ll be calculating from the input variables you send us. So for example, we would calculate an SDQ Prosocial score (SDQ_ASS_PROSOC) by adding up the scores of the items that relate to this from the input variables sheet (in this example, SDQ_ASS_CONSIDERATE + SDQ_ASS_SHARES + SDQ_ASS_HELPFUL + SDQ_ASS_KIND + SDQ_ASS_VOLUNTEERS). The input variables sheet does not have a “prosocial score” on it.

This means that you do not have to be submitting anything directly from the derived variables sheet for the PbR project, but these items will be calculated at our end.

Q: How much time will it take per child to fill out all the information needed?

From feedback from CYP IAPT sites, assessments will take about 15 minutes, and 10 minutes for follow ups. This will be slightly longer at the beginning as clinicians get used to the tools.

Q: Will you be able to capture re-referrals into the service?

In time we will be able to capture this information, as we are holding NHS IDs in order to link the data. The ability to track CYP through care pathways in this way is the key reason that data will be uploaded to the secure data facility (MegaNexus) un-anonymised initially.

Q: How will you be including multi-agency packages, i.e. any work that goes on outside of my service that is within the same period of contact?

This will be recorded by asking clinicians to record the number of hours of input from an external agency.

Q: What data do inpatient services need to collect?

For inpatient units we are asking for demographic information, period of contact information, Current View and outcome measures to be completed. We are not currently asking for activity data. It may be additional data from inpatient services is needed in the form of case study information, and we will be discussing this directly with inpatient services on a site by site basis.

Q: How do you define a “period of contact”?

This is equivalent to a ”care spell” or “episode of care”, covering the point at which the referral for the case is received to the point at which the case is closed. For the purposes of PbR, the “period of contact” should start when the resource-heavy work begins for a child or young person.  This is likely to be either when the referral is received or when it is accepted.

Q: When a child moves from one team to another within the same service, do I need to open a new “Period of Contact”? For example, if a child moves from a Tier 3 service to an inpatient unit?

Yes you should open a new period of contact, so that we can identify that the Team Type has changed (e.g. to “inpatient unit”). We need this information, which is only recordable at the period of contact level, to track movement accurately within CAMHS. This may not fit how you define a “Period of Contact” but is necessary for the purposes of the pilot project.

Q: How can we record all the work that goes on for a child before the referral is passed over officially to our team?

The period of contact should start as soon as resource heavy work for the child begins. We want to account for all work that goes on for a child, so this may mean you need to move where your period of contact starts.

Q: What do you mean by collecting “activity” information?

“Activity” refers to anything you do for child or young person that can be considered “clinically meaningful”. This includes both work you do directly with the child or things you do on behalf of the child that are not directly with them. It is very important that you record both types of activity information.

Q: How do you define indirect and direct activity?

“Direct activity” could include contact with a child or their family that is face-to-face, by phone, text, email or letter. It also includes web or video-based contact. “Indirect Activity” could include writing a report or having a meeting with other professionals to discuss the child or young person.

The categories of indirect and direct activity, as per the data specification, are:

Indirect Contact Categories Direct Contact Categories
Contact with professional about child, young person, or carers (e.g., consultation, case discussion) Direct contact with child, young person, or carers (e.g., assessment/treatment)
Travel Observation of child, young person, or carers
Report writing  
Administration  

Q: Can my service take part in the pilot if we only collect direct activity?

It is essential that information is collected about both direct and indirect activity that takes place on behalf of a child or young person. This is because without this information we are unable to fully understand the amount of resource that goes into each case, which is one of the key aims of the pilot. Please see the Dataset Requirements page for links to information about the essential data items we require to be recorded for each event that takes place (including date, time etc.), and what the different event categories are (face to face, observation, travel etc.).

Unfortunately if you are not able to use one of the systems that will allow you to collect this information, or are not able to update your system to fit the required specification, it may mean that your service cannot take part in the pilot.

Q: What is the difference between “Event Contact-Type” and “Event Contact-Medium” on the CYP IAPT data specification?

The difference is that the type of contact refers generally to the type of work done, and the medium is the way in which this piece of work is completed. So for example, a direct contact with a child (event contact type), could be carried out either face to face or by phone (event contact medium). Another example could be that administrative work (event contact type) could be carried out by phone or email (event contact medium).

Q: Do I record onto the patient database any letters that I’ve written and sent?

Letters should be recorded as an event if they are related to a named child or young person, are resource heavy and therefore cost related, and clinically meaningful.

Q: Should I record telephone calls?

As with letters, telephone calls should be recorded as an event if they are resource heavy, relate to a named child or young person, and have a cost implication. They should also be clinically meaningful.

Q: Is travel time recorded on the patient database?

You should only record a journey if it is related to a specific child or young person that you work with. Any usual journeys that you take (e.g. to and from work) should not be recorded.

Q: Do the events entered have to be put in chronological data?

No, these can be entered in any order, but you do need to make sure there is not double entry of the same activity.

Q: Do I have to record every single phone call I make or can I add up the time spent on phone calls and enter this as one event?

Although we need to collect this information, we are also aware of the burden this places on clinicians. Because of this, if it is easier you can add up the time you spent making phone calls, writing letters and reports, and enter this as one event/contact. For example, at the end of the day you might add up the amount of time you spent that day writing a report for a named child, which was 45 minutes over the whole day, and enter this as one event.

Please note the duration of events should be rounded to the nearest 15 minutes and you should enter the event time as when you entered the information.

Q: Can there be several overlapping periods of contact for one case?

This is possible, however currently they cannot start on the same date as the start-date is part of the unique ID of the period of contact. For this reason, please ensure you change the date of one of the periods of contact by one day, and ensure a note is made that you have done this in your patient database.

Q: Can there be overlapping events?

In order to record two or more events that have taken place at the same time for one CYP, you will need to ensure the start time of the events differ. This may mean that you need to change the start time of one of the events by 1 minute. One example of this is if you are seeing the child whilst another clinician sees the child’s parents at the same time.

Q: In the list of Case Closure reasons, why isn’t there an option for if a patient has “recovered”?

This would be recorded under “Discharged on professional advice”. The closure reasons list is taken from the CAMHS minimum dataset, and we are trying to align the two datasets as much as possible. Information about  whether a patient has “recovered” will be indicated by data collected from outcome measures, e.g., the SDQ, CGAS, RCADS.

Q: Do we need to record ICD-10 codes for each case?

No, this information is not required for the PbR project.

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5. Assessment and Outcome Measures

Q: Which outcome measures are mandated by CYP IAPT?

The SDQ and RCADS are mandated at assessment. There is a choice of measures available for outcome review (with associated norms) which are available in the Tracking Outcomes Resource Pack on the CYP IAPT website. At least one chosen measure must be used at least twice (first contact and case closure), however we would recommend using sessional measures to routinely inform clinical work.

Q: Are any other measures going to be added to the CYP IAPT data set?

The following information is taken from the CYP IAPT Consultation responses document (November 2012) on the CYP IAPT website:

CYP IAPT have suggested inclusion of the following measures for data specification v3 (due April 2013), subject to developer agreement and provision of relevant psychometric information and guidance as to use:

  • SCORE 15 for family therapy
  • Woolgar et al’s parent efficacy measure for parenting
  • SLDOM for learning disabilities
  • Conner’s questionnaire for ADHD (note: not mandatory and people have to pay for this measure)
  • The Short Warwick-Edinburgh Mental Well-being Scale to be added for Tier 1 or where there are no mental health symptoms
  • EDE-Q for eating disorders
  • YP-CORE and CORE for adolescents and young adults as a non-mandated measure of general functioning – subject to agreement that those using this are prepared to share anonymised data with the tool developers
  • Add HoNOSCA and CGAS to the Resource Pack (already in data specification)

Note: The CYP IAPT project is in the process of seeking permission to use the new tools from tool owners.

Q: Which SDQs should I try and get on to our electronic system. e.g. different ages/ parent versions?

We are not mandating any one particular outcome measure for the PbR pilot, we only require sites to collect outcome measures that are compatible with the CYP-IAPT dataset (which the SDQ is). More information about the SDQ can be found here: SDQ Info

Q: What recommendations do you have for tools we can use for learning disability teams?

We are not mandating specific outcome measures for the pilot however we could recommend SL-DOM, Developmental Behaviour Checklist (not free), Goals-based measures and the SDQ for milder LD. The SL-DOM will be put into the updated CYP IAPT data set by April 2013.

Q: Have you got suggestions on what tools you recommend for eating disorder services as part of the pilot?

We are not mandating specific outcome measures for the pilot; however the Eating Disorders Examination Questionnaire (EDE-Q) could be used. The EDE-Q is being added to the CYP IAPT dataset in April 2013.

Q: What measures should be used for infant mental health teams? 

For younger children you could use goals measures, YCORS and YCSRS.

The  document below also includes the suggested way forward that came out of an infant measures think tank held by CORC in 2009. The measures in the attached document are not currently part of the PbR or CYP IAPT data specification, but if there are measures you would like to suggest for inclusion, please contact us for them to be put forward as suggestions for the next consultation phase.

Infant measures CORC consultation 2009

Q: What is the maximum period of time there can be between completion of questionnaires?

We do not stipulate the amount of time between initial and follow-up questionnaire completion, although we would encourage you to consider some session-by-session completion as part of collaborative working. The minimum requirement for the PbR project is that at least one questionnaire, which can be patient or clinician reported, must be completed at a minimum of two time points (i.e. first contact and case closure).

Q: Which measures are available for the 18-21 year old age group?

We are not mandating any outcome measures for any age group, so this is something your service needs to think about. Some recommendations for measures you could use however are the Core, PHQ, GAD and EET.

Q: Are any of the assessment and outcome measures copyrighted?

The copyright depends on which measures you are planning to implement. For the majority of the measures, there are no restrictions to building them into electronic care record systems, but there are a few exceptions. Namely, there is an agreed set of item headings for the SDQ, which must be used if you would like the build this in (see here: SDQ labels for electronic scoring) and the copyright for the CORE measures (CORE, CORE-10, YP CORE) and ORS/SRS measures are held with CORE-IMS (admin@coreims.co.uk) and Scott Miller (info@scottdmiller.com) respectively. Your informatics department will need to liaise with them directly.

Q: Do we have to pay to use the Outcome Rating Scale (ORS) and Session Rating Scale (SRS)?

The ORS and SRS measures are free to use. There is a cost if you want to score and store the data in a database, which services will need to negotiate with Scott Miller, unless they are using CODE or COMMIT, in which case, we are currently in talks about having these measures added to. To download the ORS and SRS go to Scott Miller’s website.

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6. Data Submission

Q: How do we submit data?

Data will be submitted to the CORCNexus secure online Drop Box. Each service should have a designated Data Manager with a user account that has access to the Drop Box. If you have any questions about this, please contact MegaNexus: corc@meganexus.com

The Data Manager will upload the Service’s data in the form of a .zip file via a secure encrypted connection to the Drop Box. The .zip file will contain all the Service’s data as CSV files. For more information please see the CYP IAPT Import File Definition v2.0 on the CYP IAPT website.

Q: What format does the data need to be in when submitted?

Comma Delimited files (CSV) are the required format for delivery. For more information please see the CYP IAPT Import File Definition v2.0 on the CYP IAPT website. This includes an example file.

Q: The data submission window is quite tight, is there any movement on this?

There are two windows for submitting data, but we are strict on these. There will be an opportunity after 1 year to clean up and resubmit data. After this there will be a freeze of the data and you won’t be able to resubmit after this. Please see our Data Submission Calendar on the Data Submission page.

Q: Does it matter how many times we partially upload data to create final complete dataset? How would you deal with partial upload?

Currently this is a problem, but MegaNexus are looking into this. MegaNexus is going to work on this to make sure that repeated partial uploads won’t over-write.

Q: Will data be anonymised?

Un-anonymised data will be sent to MegaNexus, who will send us the data in a pseudonymised form for analysis. For more information on MegaNexus please contact corc@meganexus.com or visit the MegaNexus website. Please also see our information about data sharing and consent, and information about the data submission process.

Q: Is MegaNexus able to accept two sources of data with a local identifier? E.g. RIO and CODE

Yes, as long as the data you provide is consistent with the CYP IAPT data specification (i.e., the codes used are the CYP IAPT codes). We will not be able to do the coding ourselves and we cannot accept diagnostic codes.

Q: How many submissions do you expect during the life of the project?

We expect to receive quarterly submissions over an 18-month period.

Q: Are you going to freeze the data?

Yes, there will be an opportunity for an annual refresh and then it will be cut-off from further submission.

Q: Our past experience is that data validation processes can be tricky and time-consuming; do you anticipate any difficulties with this?

The CYP IAPT experience to date is of it being a straightforward process. However if everyone is trying to submit data at the same time then it will be slow, therefore we’d advise you not to wait until the last minute to do this. If you have concerns about this, one suggestion is that you use the free CODE database as a test bed and try out downloading all your data from CODE as this will put data into the required format.

Q: Can we submit test data to MegaNexus to check our systems are up and running properly?

Yes, we strongly encourage services to submit data to MegaNexus’ test system.

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7. Data Sharing and Consent

Q: What are we asking consent from children and their parents for?

We are asking consent for the child’s personally identifiable information to be held by MegaNexus along with their questionnaire responses, for the purposes of linking data (for example, to link data if a child moves between services). It is your responsibility to ensure that consent is sought (and that it is indicated when consent is not given). You must not upload data to the CORCNexus system for anyone who has not given consent. Please see our Consent and Data Sharing page for more information and links to the consent forms we are using.

Q: Is the data going to be anonymised?

The data will be pseudonymised before it reaches the team for data analysis. It is held by MegaNexus (secure data holding company) in an unanonymised form however, to ensure data can be linked so we can track children in care pathways and re-entering services. For more information about the submission and pseudonymisation process please see the steps of data submission on the Data Submission page.

Q: How many consent forms do we need to have completed for the PbR project?

For the PbR project, we require one consent form to be given by either the child, if deemed “gillick competent”, or the parent. Please see the guidance in the Consent and Data Sharing section.

Q: If a child is looked after, who do we ask for consent from?

You should ask whoever has parental responsibility for the child, or the child if they are deemed gillick competent.

Q: Can I incorporate the text into our own consent forms so we don’t have to complete additional forms for this project?

Please feel free to use and adapt our consent form – with one proviso. The text of the form is based on advice from DH Information Governance to make sure we cover all bases , so please make sure any changes you make are signed off by your own Information Governance Team.

Q: Can we use opt-out consent rather than opt-in?

An ‘opt-out’ consent system assumes that consent is given unless explicitly withdrawn. Because of this we have been advised to use an ‘opt-in’ approach to obtaining consent for the PbR project,  to ensure that identifiable data is held only from those CYP who have (or their parent has) been informed about the project and have explicitly agreed to allow this.

Q: Will the team be able to use the data from children that don’t consent?

We ask that you make every effort to obtain consent. Data from young people who did not consent will not be uploaded via the Meganexus upload and in general will not be included in the analysis. When uploading the data for a quarter, you will be asked to give the percentage of your service’s caseload for whom consent was not given.

If there appear to be certain groups of young people for whom consent appears to be difficult to obtain (e.g. young people in immediate crisis or who are being treated against their will), we will consider making bespoke arrangements with services to obtain these data in an anonymised form.

Q: Do I still need to collect all the information required for the PbR Pilot Project for a child that does not consent?

Yes, you should still collect this information and enter it onto your patient databse, as we may be able to use this data further along in the pilot, in an anonymised form. For clinicians, the process should continue as it would for a child who does consent. The only difference will be that the consent box is not ticked on the system, and therefore it is not uploaded to MegaNexus at the quarterly upload points.

Q: Are the consent forms available in different languages?

We understand that some pilot sites will want to create translations of the consent form and other materials as part of their work with families where English is not their first language. Whilst the development of appropriate consent forms and any translation of these is a service’s responsibility and so will need to be organised locally, (as would translation of any other materials) we would be grateful if you would inform us if your service does create any translated materials and let us know whether you would be willing for these to be shared with other services nationally as relevant.

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8. Compatible IT Systems

This section primarily includes questions about the two IT systems CODE and COMMIT that were presented at the induction events in September 2012.

Q: How many services currently use COMMIT and CODE within CORC?

Currently, 8 services use COMMIT, 9 services use CODE. There will have to be a small amount of double entry if using an additional system (identifiers).

Q: Can you add outcome measures to existing IT systems (e.g. CODE/COMMIT)?

You can negotiate this with commercial providers independently, or if you want something included as a CORC member, then inform CORC and you may be able to have it included that way.

Q: What’s going to happen after 2015 to systems such as CODE and COMMIT?

We don’t know for definite, CODE has been developed to help CORC services, so it depends on CORC members. It is not likely to have major developments going forward. COMMIT however is a commercial enterprise so is more likely to develop further.

Q: Should we move over temporarily to one of these systems?

This is for your service to decide. MegaNexus can also discuss linking of systems (e.g. Rio and COMMIT) to avoid double entry.

Q: What is the longevity of CODE?

It is sustained through CORC, if CORC disappeared then it would be CLICKdatabases that would decide whether to continue to support. See our Useful Links and Documents page for links to more information about CODE and CORC.

Q: We are a member of CORC, will CORC+ be sufficient for what is needed for PbR?

Yes, this dataset is sufficient for CYP IAPT, PbR and CORC.

Q: Can you export from RIO into CODE?

You will need to liaise with Tom Patterson from Click Databases to discuss this. Please contact us for his details.

Q: How does CODE incorporate the patient journey from one service to another within the trust?

CODE won’t allow duplicates as long as all users in the service are using the same back-end . Different types of professionals can enter into the same case however.

Q: How developed are the systems to support data entry? How close are you to hardware solutions that have the speed to be useable with iPads?

COMMIT can already be accessed via iPads through a front-end mechanism. As long as your internet speed is fast enough then this should be useable. PC-MIS is already being accessed by iPad and we have received good feedback on this use.

Q: Will we be able to access management reports in CODE?

The back-end of CODE is available for you to do what you want with. It is freely available and you can liaise with CODE or change it yourself. CORC members will get service and team level reports.

Q: What reporting functionality does COMMIT have?

COMMIT comes as standard with reporting functionality that allows users to export all data in various formats including excel and CSV. If you have further questions please contact COMMIT for a demonstration by emailing corc@meganexus.com

Q: Can we access the back-end of COMMIT?

No, the way in which COMMIT is set up does not allow services access to the back-end. COMMIT does allow “Super-Users” however, who can access the front-end data of all users. If you have further questions please contact COMMIT by emailing corc@meganexus.com. Although you cannot access the back-end you can still run reports and export data into various formats. Please contact COMMIT for a demonstration.

Q: What level of encryption does COMMIT have? 

The COMMIT system uses HTTPS which provides up to 512 bit encryption; it will depend on individual browsers as to how much of it is used – generally it will be 256.

Q: What other compatible systems are there?

Please see the Useful Links and Documents page for details of all systems we are currently aware of that are definitely compatible with our requirements. There may be other systems available that are compatible, please let us know if you are aware of any.

Q: Can you tell us if COMMIT will meet all the requirements for the CAMHS minimum data set?

The COMMIT system is aligned with the CYP IAPT data set, which in turn should meet all the requirements for the CAMHS minimum data set. However if you notice any inconsistencies please let us know.

Q: Items that are indicated as mandatory on the COMMIT and CODE systems when entering data do not match the items that are essential for PbR. Why is this?

The CODE and COMMIT systems are set up for capture of CYP IAPT information. The items that are mandatory for CYP IAPT do not always match the items that are essential for PbR.

There are several items that PbR requires (in order to answer the project’s key questions), that  IAPT doesn’t as mandatory. It is important that all essential items for PbR are collected, so please ensure you are familiar with the following documents so that we can ensure these items are collected. Both of these documents can be found in our Useful Links and Documents page.

  • The Data Collection Briefing Note
  • The Data Collection Guidance Document

There are only two items- Completion Point and Event Location, that are mandatory for IAPT but not for  PbR. These can both be entered as “missing” data.

Q: Some of the Current View items can be found in two places on the COMMIT and CODE systems. Why is this and do I have to complete both?

Some items from the Current View were part of a previous version of the dataset. As some sites are still collecting this dataset, this means that certain information may appear twice on the system. All sites using the CYP IAPT dataset Version 2 should be completing this information as part of the Current View ONLY, and do not need to enter this information twice. If there are further questions, please contact the database developers by following the links on our Useful Links and Documents page.


9. Feedback For Sites

Q: Do you have procedures in place for feedback on data quality and completeness?

Yes, we will be feeding back on this in quarterly data quality reports, and also summary reports in our newsletter. We are keen for the datasets to be as complete as possible.

Q: Are there any sort of targets we’re working towards or are you just asking for as much data as possible?

There may be friendly competition around data quality but no particular targets. We are asking services to send as much data as possible.

Q: Will feedback be provided to sites both on a national and site-specific basis?

We will be able to feedback on data completeness on a site-specific basis. Feedback regarding other aspects of data (such as activity and outcomes) may be possible in time but it will take a while before we have sufficient outcome data for any reliable reporting.


10. Data Analysis

Content will be updated here soon

For information about current data analysis taking place please go to our Data Analysis page. If you would like to discuss this further please contact us.


11. Cluster Development

Q: Why are the pilot sites not yet clustering new patients? 

We are not currently asking clinicians from pilot sites to make cluster allocations because the development of a reliable clustering tool and associated algorithm is dependent on comprehensive analysis of the data received. Asking clinicians to make a cluster allocation is likely to come into effect in 2014.

Q: What do the clusters look like that are being developed?

There are currently four cluster groups in consideration, which have been provisionally named Clinically Meaningful Resource Groups (CMRGs). These have been developed based on analysis of retrospective data and learning from previous work, but may be subject to significant revision and changes following data collection and analysis. The eventual clusters may look very different to these however, and will be informed by extensive data analysis as well as expert consultation.

Q: Will we eventually be able to usefully cluster and use PbR for emergency assessments, e.g. in A&E?

It is anticipated that the CAMHS PbR system will be useful in the context of emergency assessment work. The potential proposed cluster categories are unlikely to be solely diagnosis led. Instead the current idea is that they will be calculated on an approximation of units of clinical time requirement. Therefore very short pieces of work as well as longer and more complex multi-professional assessments could all be summarised and put into the appropriate cluster.

Q: Will the eventual clusters that are developed take into account the CAMHS work for consultation sessions or other work without a clear mental health problem e.g. bereavement work?

As the system currently being piloted is to be built around units of clinical time rather than specific diagnoses, consultation work could also easily be clustered. Our pilot project will look at the issue of consultation more thoroughly and will help us develop this area more clearly. Regular pieces of consultation such as “Psychosocial Ward Rounds” in liaison practice can therefore be clustered. We will learn more about small pieces ad hoc consultation and liaison practice during the course of the PbR pilots.

Bereavement and other counselling are other examples of work that we envisage could be easily “clustered”. As explained elsewhere, the PbR clusters will account for units of clinical time required, rather than clustering on the basis of the actual content of the work. Bereavement and other similar work therefore would be accommodated within this sort of system.

Q: Will I be able to cluster if my formulation of cases is a psychosocial and problem based one, rather than a diagnostic based one?

In designing the Current View tool for the piloting of PbR we carefully looked at the available datasets regarding service usage in CAMHS. Our data so far shows that some “diagnoses” do in fact significantly alter service utilisation time required to treat. In other contexts, psychosocial factors are a more significant influence on service usage. The PbR tool developed so far would anticipate certain diagnostic areas to be flagged up. But experience to date from our reference groups and piloting has been that these have diagnostic issues have not caused difficulty. We will clearly get a better understanding of the usability of these tools in a wider multi-professional network, as the piloting of the PbR system progresses. We will also then be in a position to have a much better understanding about the sort of information required to best approximate service usage after initial assessment.

 

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