supported by

British Heart Foundation
Health & Scoial Care Information Centre

   National Audit of Cardiac Rehabilitation (NACR)


          

FAQs

Questionnaires
Consent
Technical Questions – ID’s
CCAD
Analysing Data
Referrals and Datasharing

Questionnaires

  • When do the patients complete the questionnaires?

    The patients complete the questionnaires at three points along their cardiac rehabilitation pathway; before they start their programme, after their programme and 12 months later.

    These three points in the pathway are referred to as assessments and are as follows;

    ASSESSMENT 1 - before the rehabilitation programme – it is acknowledged that this term is vague but for practical reasons this is unavoidable due to the variance in which cardiac rehabilitation is provided across the UK. Assessment 1 could be implemented on a ward prior to discharge, or at an outpatient clinic in phase 2 or when they first attend a phase 3 programme. As long as the initiating event date is filled in the NACR project team can control for difference in start date statistically.

    ASSESSMENT 2 - after the rehabilitation programme or as close to 12 weeks after the ‘programme’ started as possible. For a programme that is delivered within phase 3 this is usually a reasonably good fit, however for menu based programmes that encompass a number of options (i.e. heart manual plus an outpatient education and exercise programme) or for programmes that have very long waits it will be less good. There is a time limit to implementing Assessment 2 and this is 20 weeks after Assessment 1 – any Assessment 2s that are implemented post this time frame will be discounted from the NACR.

    ASSESSMENT 3 - at 12 months from Assessment 1.

  • If patients do not respond to 12 week questionnaires do we continue to send out questionnaires at 12 months?

    Yes, the 12 month outcomes are in some ways the most important ones they are the NSF targets for example. Purchasers of services will be more interested in long-term gains than short.

  • Should I still collect data from patients that have declined a cardiac rehabilitation programme?

    Yes, if this is possible. It enables the NACR project team to compare those who have not taken up a cardiac rehabilitation programme with those that have.

  • If we are sending out questionnaires by post, how many times do we need to request and remind patients if questionnaires are not returned?

    Ideally, patients should be sent out reminders at two week intervals twice after the original questionnaire. However, the NACR project team acknowledge that some programmes do not have the resources to do this.

  • How long do we need to keep the paper questionnaires?

    You should keep the paper questionnaires for at least 6 months or if your local policy is longer then for that period. If in doubt, you should check with your local audit department.

    Consent

  • Do I need to get consent from the patient prior to submitting data to the NACR?

    No.

    Section 60 of the Health and Social care Act (2001) mandates that patient identifiers cannot be collected centrally without the consent of the patients. However, exemption from this section can be granted to an organisation by the Patient Information Advisory Group (PIAG) if they consider that the purpose is valid, the organisation is reputable and the demands of data collection and storage are secure.

    The collection and submission of NACR data has been granted PIAG exception. The PIAG approval is held with the National Clinical Audit Support Programme (NCASP) which operates under a statutory body called the Health and Social Care Information Centre (IC).

    NCASP works in collaboration with a range of NHS organisations and professional bodies and provides an infrastructure for the collation, analysis and feedback of local clinical data to support effective clinical audit across the NHS. The data service meets rigorous standards of data security, confidentiality and transmission and enables organisations to monitor their care, comparing it with clinical standards and aggregate averages of other organisations.

    NCASP has been granted authority to process patient information without explicit consent under Section 60 of the Health and Social Care Act 2001.

    To view the NCASP PIAG application;

    • Click on the following link www.nigb.nhs.uk/ecc/register-1 and select ‘Download the Register of approved applications’ at the top of the page.
    • The NCASP register entry can be found in row 37 of the document
    • To view the approved application, click on the hyperlink located in C37 (National Clinical Audit Support Programme (NCASP) Audits for cancer, coronary heart disease, and diabetes)

  • Should I inform patients that their details are to be used for national audit purposes?

    Yes, even though consent is not required for the NACR It is a requirement of the Data Protection Act principle of ‘processing information fairly and lawfully’, that all patients have the right to be informed about how information pertaining to them may be used, who will have access to it, and those parties to whom such information may be disclosed.

    The Patient Information Advisory Group (PIAG) also have a number of principles that support the successful application of section 60 approval, one of them being ‘all organisations using Section 60 support should make information materials available to patients describing the information they use and why they need it’.

  • How can I inform patients that their details are to be used for the purpose of the national audit?

    Face to face communication with the patient – as part of general communication with patients, staff should ensure, in all appropriate circumstances, that when they record or share information that the patient is aware and they explain their actions, including informing the patient who will see the information and why.

    Questionnaire 1 – there is information in the front of the first Questionnaire which provides patients with information on the use of the data, and the purpose of the audit.

    Technical Questions – ID’s

  • Can two or more users use the same PC?

    Yes, as long as each user has a user ID. After launching Lotus Notes you will be prompted for the password of the last person that logged on to the national database. If this is not your name you will need to switch to your user ID this is achieved by;

    • click the drop down button represented by a downward pointing arrow – this will display the names of other user IDs who have previously accessed the database
    • If your name is not displayed in the drop down list of names you will need to click on other.
    • A box will then appear and you should be able to select your user ID from that box in the form of jsmith.id
    • Double click on your ID file and enter your password
    • If your name is not displayed in the box it can be found by selecting the drop down arrow at the top of the box and then choosing the following folder C:\Program Files\Lotus\Notes\Data – your user ID will be located here

  • Do I need a licence to access the national database?

    Only for the Lotus version. Each user has to have a licence in order to access the database and this comes in the form of a user ID. IBM do not provide licences on a multi-user access basis. You will receive one licence (i.e. user ID) free of charge after registering interest in the NACR, additional licences have to be purchased. Please contact NACR Helpdesk for further information.]

  • Can I allow my colleague to use my user ID to access the database?

    No, your colleague will have to have their own individual user ID.

  • How do I purchase an additional user ID?

    To purchase additional user IDs (or licences) you can either (a) go directly to IBM via your IM&T department within your NHS organisation or (b) contact the NACR Helpdesk by email or phone (NACR Training and Information Officer) who will purchase a license on your behalf.

    (a) If you decide to purchase additional licences via your IM&T department you will need to purchase Lotus Notes With Collaboration User LIC+SW Maint 12 MO (D5CS2LL). The cost of the licence varies depending upon who your organisation has an account with (e.g. directly with IBM or with an IBM reseller). The time this process takes will vary between NHS organisations and has been known to take up to 6 months in some areas across the UK for a number of reasons.

    (b) If you decide to purchase additional licences via the NACR project team you will need to send a request to NACR Helpdesk via email and include the following details of the user the ID is to be issued to;

    • Name
    • Title
    • Address
    • Telephone number
    • Email
    • Hospital name (if applicable)
    • Organisation name (PCT or hospital trust)

    You should also provide the following information within your email so an invoice can be raised;

    • Organisation name
    • Organisation address
    • Contact name
    • Contact telephone number
    • Purchase order number

    Once we have received an email containing this information we will raise an invoice to your organisation. We will then contact CCAD and request for a user ID to be sent to you via email; once you receive the email from CCAD, along with your user ID, you will have to request a password.

  • How much does an additional user ID cost?

    If you purchase additional licences via your IM&T department the cost may vary, depending on who your IM&T department have an IBM account set up with. You will have to liaise directly with your IM&T department to find this out.

    If you purchase additional licences via the NACR project team one licence currently costs £85 + VAT

    CCAD

  • When I submit patient data where does it go?

    All patient data is submitted to the Central Cardiac Audit Database (CCAD), and stored on secure servers.

  • Who is CCAD?

    CCAD is part of the National Clinical Audit Support Programme (NCASP) which is a programme to accelerate the delivery of national comparative risk adjusted clinical audit data in the national clinical priority areas of CHD, cancer, and diabetes in the first instance. The programme supports implementation of the National Service Frameworks and NHS Cancer Plan, supporting assessment of quality of care and progress towards NSF standards, with the aim of improving outcomes for patients.

    CCAD was set up to take over data collection from the existing cardiac registries, to remove duplication of effort and to add mortality tracking. Data is held in a number of databases with identification of patients by NHS Number so that it is independent of the institution where events occur. The longer term objective is to consolidate these databases into a single view to reflect and track the CHD patient journey.

  • Will patient data be transferred and stored securely?

    Yes. Participating organisations should feel confident that in releasing information to support the audit they are doing so legally and ethically. Further information on the secure transfer and storage of patient data can be found in CCAD’s System level Security Policy.

    Analysing Data

  • Does the national database have a facility to support the analysis of local data?

    The national database incorporates a number of functions that facilitates the delivery of standard reports. For more information on how to access and use these functions please contact the Helpdesk in York (01904 321326).

    We also have a statistician as part of the team at York, who is happy to run reports for individual programmes. Her contact details are:

    Veronica Morton Email: veronica.morton@york.ac.uk

  • 'Will the national database allow me to collect local data that is not on the dataset?

    Yes.

    The national database has an integrated facility (‘User Fields’) whereby you can collect up to 40 additional fields. The data fields you add to the database, along with the information you enter, can be exported from the database for further analysis

  • I want to analyse my data in a detailed way, am I able to do this?

    Yes.

    The national database’s analysis functions only provide generic analyses of the data. The database does not include all possible local queries that your cardiac rehabilitation programme may require. This is due to the vast number of cardiac rehabilitation programmes that use the national database across the UK and the variation of data required at a local level.

    However, there is an option on the database that enables you to download the data for more detailed or ad hoc reporting. The downloading of data is achieved via the export function; please refer to the user guide Volume 4: REHAB (Cardiac Rehabilitation Application) Guide.

    The data can be exported to an Excel file; however analysing data in Excel can be difficult especially when there are large amounts of data in the spreadsheet.

    The NACR project team have created an additional application – an Access Query Builder - that will support the more detailed analysis of local data and it is available to all those who require it. This can be found in the Download section of the website. We also have a statistician on the team who can run specific reports for you.

    For further information on the Access Query Builder, or obtaining your own reports, please contact Nerina Onion via email or on 01904 321326

  • Can I be trained in how to use the NACR Microsoft Access application?

    Yes, training is provided at the University of York on a monthly basis as part of the general training – please see the section on Training for further information. Or, you can make use of the telephone training that the Helpdesk at York offer.

  • I don’t have Microsoft Access on my PC, do I have to purchase it?

    Microsoft Access does not have to be purchased. Microsoft Office is the preferred office suite application for the NHS, and as such is regulated under the NHS Microsoft Select 6 agreement. Any version of Microsoft Office after Office 97 contains Microsoft Access as a standard involving no extra cost.

    For those few using very old versions of Microsoft Windows the database can still be made available but as an mde file rather than mdb. Microsoft Access mde files can run on any Windows platform prior to Windows 2000 without installation of Microsoft Access (the mde file incorporates a runtime version of Access).

    If you do not have Microsoft Access available on your PC you should enquire about its availability with the IM&T department within your organisation.

    Referrals and Datasharing

  • Can I share information with other NHS organisations via the national database?

    Yes.

  • What’s the difference between ‘Referrals’ and ‘Data sharing’?

    Referrals is the passing of individual patient records from one programme to another, to enable the continuation of the rehab record without having to duplicate patient information. It is usually done between programmes that are in different trusts (hence the need for Caldicott Guardian permission). Data sharing (or ‘permissions’) is the sharing of all patient data held by a programme with another programme within the same trust – all those involved in the data sharing can see and edit each others records, and add records for each other’s programmes. This is useful when staff work across more than one programme.

    REFERRALS:
    The national database has an integrated refer function which will allow you to share specific patient records with other authorised organisations. This function is disabled until you obtain authorisation from your organisations’ Caldicott Guardian.
    NB: The Referral function is currently only active on Lotus.

  • What do I have to do in order to obtain authorisation to share data with other NHS organisations?

    In order to share information with other NHS organisations an agreement needs to be reached between all parties concerned. This agreement comes in the form of an information sharing protocol and has to be signed by the Caldicott Guardians of each participating organisation.

  • What is an information sharing protocol?

    An information sharing protocol is a document that contains ‘… rules and procedures for the disclosure and use of patient information, which specifically relate to security, confidentiality and data destruction, between two or more organisations or agencies’

    Confidentiality: NHS Code of Practice, 2004

  • Do I, or my organisation, have to write an information sharing protocol?

    No.

    An information sharing protocol specific to the NACR project has already been written. The document was written by members of the NACR project team in collaboration with Information Governance Managers from the North Mersey Health Informatics Service.

  • How can I obtain a copy of the NACR information sharing protocol?

    The information sharing protocol is held by the NACR project team and can be made available upon request. For further information please contact the NACR Helpdesk via email or on 01904 321326.

  • Once I receive a copy of the information sharing protocol what do I do?

    After receiving the NACR information sharing protocol you will need to obtain the signature of the Caldicott Guardian within your NHS organisation and the signatures of the Caldicott Guardians within the organisations you wish to share information with.

  • What do I do after I obtain the signatures from the relevant Caldicott Guardians?

    You should then return a signed copy of the NACR information sharing protocol to the Nerina Onion via email, post or facsimile.

    The postal address is:

    Department of Health Sciences
    Area 4
    Seebohm Teaching Building
    University of York
    York
    YO10 5DD

    Fax: 01904 321388

  • What happens after I provide the NACR project team with a signed copy of the NACR information sharing protocol?

    On receipt of the signed copy of the NACR information sharing protocol the NACR Team will then update the NACR information sharing register and file the documentation accordingly.
    NB: A minimum of 2 programmes need to return their signed paperwork before the referral function can be used.

    The refer function on your user ID profile will be activated and you will then be emailed confirmation that the function has been enabled.

  • How do I refer patients to other NHS organisations?

    Further information on how to use the refer function can be found in the user guide, Volume 4: REHAB (Cardiac Rehabilitation Application) Guide.

    DATA SHARING:
    You can also share all your patient data with CR programmes within the same Trust – you do not need Caldicott Guardian permission to do this, just ensure that all the programmes who wish to do this contact the Helpdesk at York to confirm they want this set up. Once this is done, your permissions to view on NACR will be amended to enable you to see all the data for your patients, and those entered by the other programmes in your trust. You will also be able to add and amend records for these other programmes.

  •  The University of York