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					    National Audit of Pulmonary Hypertension
                                                       Number 1: October 2009

Welcome to this first edition of the National Audit of Pulmonary Hypertension (NAPH)
newsletter. NAPH is now 6 months old and huge progress is being made on all fronts to
establish an accurate and reliable database, thanks to the hard work of hospital clinical,
administrative and IT staff. During the first 6 months we have tried to minimise changes to the
database to enable individual centres to get up and running.

Over the next 6 months we shall be producing a monthly newsletter to help users. Inevitably
there are always teething troubles setting up a national audit and some changes now need to
be made. These were discussed at the recent Users group meeting in London. This
newsletter will keep you informed of such changes. It is also an opportunity for you to pose
questions of general interest and importance or make useful suggestions: all will be gratefully
received and we shall print some of these in future newsletters.

Which patients are included in NAPH?
NAPH is a prospective audit of designated pulmonary hypertension centres in the UK. All
patients who have been seen on or since 1st April 2009, or who are prescribed disease-
targeted therapy by a designated pulmonary hypertension centre are included in the audit.

Why is NAPH unique?
This is the first national audit to be linked to commissioning. In the next few months the audit
database will be used to generate the information for invoicing for the expensive drug
therapies. This information will be sent automatically to SCGs after verification by hospital
Trusts. More about how this will work in future newsletters.

Who is funding this audit?
The first year which ended 31st March 2009 was funded by the patients‟ association, PHA-UK.
I extend to them my sincere thanks for launching this project. During this period the audit
database was constructed and launched. Data from individual Trust databases started to be
imported into the new database. The funding from 1st April 2009 has been taken over by
specialist commissioning for pulmonary hypertension and is being led by Cathy Edwards from
Barnsley PCT.

What should we be trying to achieve in the next 6 months?
First and foremost we need to ensure that complete and accurate data about patients is being
entered into the database. To help to achieve this we shall be starting to provide data quality
reports for each centre. At the same time, the Information Centre will be developing the
Commissioning Report linking the database to commissioning. There will be additional
functions added to the database which we hope will make it more user friendly as well as
some minor modifications to the dataset.

The staff at the NHS Information Centre, CCAD and I are here to help you meanwhile. The
details of how to contact us are shown on page 5.

Simon Gibbs, Clinical Lead.

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                                          In this issue

           1.     Changes to the dataset                            Page 2
           2.     Changes to the database                           Page 2
           3.     New functions in development                      Page 3
           4.     Coming soon                                       Page 3
           5.     Contributions to the newsletter                   Page 4
           6.     NAPH team and contact details                     Page 4

1. Changes to the dataset
  In response to feedback at the pulmonary hypertension user group and project
  board meetings, the following changes will be made to the dataset as of COB,
  Friday, 30 October 2009 to ensure it meets the new standards of care and
  reporting requirements for commissioners:

      Item            Field name               Detail
      Item 2.03       New field                GP practice code to be added
      Item 3.02       Consultation type        Options 5 (DNA) & 6 (Delay due to patient
                                               choice/unavailable) added
      Item 3.07       Consultation Outcome     Option 10 „death‟ to be added
      Item 14.02      Procedure type           Options 4 (IVC filter)
                                               Option 5 (Long term indwelling venous catheter)
                                               Option 6 (unsuitable for pulmonary endarterectomy)
                                               all to be added
      Item 19.02      Reason for discharge     Option 0. „Not suffering from Pulmonary Hypertension‟
                                               to be added
      Item 19.02      Reason for discharge     Discharged to other UK centre rent specialist centre:
                                               options to see all pulmonary hypertension centres
      Item 19.02      Reason for discharge     Option 7 „Death‟ removed.

2. Changes to the database
       Visual Active / Inactive flag to be seen on all records.
       Warning flag for patients without a consultation or diagnosis record.
       Ability added to delete records (can also restore them as necessary)
       Export ability to select only certain file types for export
       Filter to show only Investigations or Treatments only on the New Referral and
        Demographics screens.
       Added patient Name to all related records
       Added „Show New Referral‟ and „Show Demographic‟ buttons to allow
        jumping between records quickly.
       New „Save and Create another Investigation‟ button to streamline data entry
       Changes to counts in Activity report to show clearer figures.
       Added Treatment plan report by drug type optionally including historical

                                          Page 2 of 4
3. New functions in development
The following functions are in development. The local reports will be ready in
November ahead of the NCG visits to each specialist centre and will soon be
followed by the on-line views.

 On-line Views       Number of patients currently active in the service.
                     Number of patients on targeted therapy.
                     Items to measure: time from referral date to treatment date
                     Change in WHO functional class from pre-treatment to last reported
                     Change in CAMPHOR from pre-treatment to last reported
                     Number of patients on IVC filters
                     Time from referral date to treatment date
                     A new referral where no consultation follows within 6 weeks.
 Local reports to    Time between receipt of a new referral and first consultation (mean,
 comply with new     median, range in days, and % patients who are marked “urgent” being
 standards of        seen within 2 weeks, and % patients marked “elective” being seen within
 care                one month)
                     Time between receipt of a new referral and commencing disease-targeted
                     therapy if diagnosis PAH or CTEPH (mean, median, range in days, and %
                     patients receiving drug therapy within 8 weeks)
                      Report of communication with GPs: time between date of diagnosis and
                     date GP letter dispatched
                     Referral of CTEPH patients for PEA: time between decision to refer for
                     PEA and dispatch of referral letter
                     Referral for lung transplantation: time between decision to refer and
                     dispatch of referral
                     When patients on disease-targeted therapy were last seen at the
                     designated centre (mean, median, range in days; % patients not seen for
                     >365 days)
                     Number of patients with lung disease or heart disease being followed up
                     regularly at designated centre (seen >3 consultations and not discharged)
                     Number of patients under the PH designated centre (active, i.e. not
                     discharged or dead), number of patients according to final diagnosis, and
                     number of patients within each diagnostic group on disease-targeted
                     Data Quality/exception Reports
                     Time from diagnosis date to date informer referred.
 Data Dictionary     Work is underway on a NAPH Data Dictionary. A meeting has been
                     scheduled for Tuesday November 10 to define data fields. We will keep
                     you posted on progress.

4. Coming soon

 Incomplete Records flag to show where records are incomplete and allow for override
 on these records.
 Look up for referral hospitals
 Incomplete data and missing fields Missing fields can be identified via data downloads:
 A new function whereby users can download into excel, add missing filed and then
 upload back into the database without having to enter again.
 Centre specific price lists for drugs in monthly amounts.
 Function for copying audit records form one centre to another following discharge to
 that service
 Patient dashboard

                                    Page 3 of 4
5. Contributions to the newsletter
  The aim of the newsletter is to keep everybody up-to-date with progress and new
  developments within the audit. We would also like this to be a forum to share
  your views and comments in between the biannual meetings.

  The newsletter will be distributed on the 2nd Friday of the month. If you would like
  something included, please submit send your contribution by the first Friday of
  the month. If you would like to contribute to the next newsletter please send your
  submission by Friday 6th November.

6. Contact us
  If you have any queries, problems or need additional information please contact
  one of the NAPH project Team:
   Dr Simon Gibbs        Clinical lead      

   Tracy Whittaker       Project Manager    
                                                      0207 6337701
   Stewart Fleming       Database developer 
                                                       0207 6337485
   Chilenwa Uzowuru      Business and Project         0207 6337720
                         Support Officer    

   CCAD helpdesk         If you experience any technical difficulties please contact the
                         on or 0845 300 6016, selecting
                         option 2.

                                    Page 4 of 4