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.

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.

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.

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.

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.

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;

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

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.]

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

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

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

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.

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:

Yes.

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.

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.

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

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.