RARER CANCERS FORUM PROJECT: PATHWAYS TO DIAGNOSIS- Briefing notes and Data Collection Form

The aim of the project is to improve the diagnosis of rarer cancers and so help improve outcomes. Patients will need to ask their GP practice for access to their medical records and then use the attached data collection form to extract the information. The findings will be anonymised and written up in a report for the Department of Health. You will find more information about the project in the attached briefing notes.

Please note that:
o We are interested in collecting data on patients with a rarer cancer who attended a GP practice at any time in the last five years i.e. from 7th November 2003 to 6th November 2008 inclusive;
o This project only relates to patients who attended a GP practice in England.
o We are happy to reimburse your reasonable travel expenses and the receipts should be included with your completed forms.


Please let me know if you think you can help us with this. If you can, it would be good if we could have the completed forms back in three to six weeks' time. However, we realise a lot depends on how long it takes for you to gain access to your medical records. It would be useful for us if you could keep a brief record of the process you go through in gaining access to your medical records.

If you have any queries please do not hesitate to contact us.

Yours sincerely

Andrew Wilson Webb
Chief Executive Officer
RARER CANCERS FORUM
Registered Charity no.
www.rarercancers.org.uk

Briefing Notes:
RARER CANCERS FORUM PROJECT: PATHWAYS TO DIAGNOSIS



Drawing on the experiences of patients attending GP practices
Purpose of the study: improving diagnosis of rarer cancers
Rarer Cancers Forum has obtained Department of Health funding to investigate the pathways by which patients, in England, with less common cancers are diagnosed.


Many of these rarer cancers are very difficult to diagnose, yet the earlier the diagnosis is made and treatment started, the better the outcomes for patients. The information obtained in this project will only be used to try and improve outcomes for people with rarer cancers.
By rarer cancers we mean any cancer other than breast, lung, colorectal and prostate.




How you can help
Please ask to see your medical records and then use the Data Collection Form to collect the information we need.


We are interested in obtaining data on all patients with a rarer cancer who attended a GP practice at any time over the last five years, from 7th November 2003 to 6th November 2008 inclusive.





Gaining access to your medical records.
On the NHS Choices website ...link here it states that:


“Under the Data Protection Act 1998, you have a legal right to access your health records. If you want to see your health records, you can ask at your GP surgery, and arrange a time to come in and read them. You don't have to give a reason for wanting to see your records.

If you want to see your health records, you may be asked to submit your request in writing. It's a good idea to state the dates of the records that you want to see - for example, from - and to send the letter by recorded delivery.
You should also keep a copy of your letter for your records. You will usually receive a response to your request within 21 days, although the law states that your hospital, or surgery, has up to 40 days to respond”.




Confidentiality
All information given will be treated anonymously and in the project report it will not be possible to identify patients or GP practices.



Data Collection Form
This form is in two parts:
o Part A is for collection of data related
to your first visit to the GP practice
o Part B gives headings for the collection
of data related to any subsequent visits in connection with
the same illness


Notes for completing the form
o Please use your medical records to answer the questions,
not your own memory of events.
o If your memory of events does not match what you read in
the medical notes, please make a note of the mismatches in
the ‘Your comments’ section.
For example, if the symptoms you remember reporting at a visit are not the same as those recorded in your medical records, please make a note of this in the ‘Your comments’ section.


o If you cannot find the information related to a particular
question, please write‘Information not recorded’.




Thank you very much for your invaluable help which is essential to the successful completion of this project.

---------------------------------------------------------


We are interested in obtaining data on all patients in England with a rarer cancer who attended a GP practice at any time over the last five years, from 7th November 2003 to 6th November 2008 inclusive.




Data Collection Form.
Please copy and print of this form. After filling in your details send it to:
Mr. Andrew Wilson Webb
Chief Executive Officer
Rarer Cancers Forum
The Great Barn
Godmersham Park
Canterbury
Kent CT4 7DT


---------------------------------------------------------------


PART A:


FIRST VISIT
Please answer questions using your medical notes, not your memory of events.




1.0- Your first visit to GP practice


1.1- On what date did you first visit your GP practice in relation to your illness? ……/………/…






1.3- What symptoms did you report?
(please list e.g. indigestion, backache, unexplained weight loss, tiredness, abnormal bleeding etc)


……………………………………………………………………………………………………………………..


……………………………………………………………………………………………………………………..


……………………………………………………………………………………………………………………..




1.4- How long had you had symptoms?
(in weeks or months) …………………………………………………………..




1.5 Were you examined? Yes: No: Not known..




1.5.1- If you were examined, who carried this out?
e.g. regular GP, locum GP, nurse


………………………………………………………………………………………………………………………..




1.5.2- What were the findings of the examination?
(please list key findings e.g. abdominal mass, ankle oedema, blood pressure (e.g 200/110) etc.

………………………………………………………………………………………………………………………..


………………………………………………………………………………………………………………………..


………………………………………………………………………………………………………………………..




1.6- List any tests carried out or ordered e.g. blood (specify type), ultrasound, scan etc.


………………………………………………………………………………………………………………………..




1.7- Was any record made of relevant family history? Yes: No


If yes, please specify family history




1.8- Provisional/tentative diagnosis, if any recorded?


………………………………………………………………………………………………………………………..




1.9- Specify outcome of first visit (please tick one box):


1.9.1- You were reassured and not asked to return ....


1.9.2- Your were asked to return to GP practice for a further
visit ......


Specify time interval to follow-up ………………………..


1.9.3- Were you referred? Yes: No:


1.9.3.1- If yes, what was the date of your referral?


………………………………………………………………………………………………………………………..


1.9.3.2- To which department were you referred?
e.g. gynaecology, gastroenterology etc.


………………………………………………………………………………………………………………………..


1.9.3.3- On what date were you seen by a clinician in the
department to which you were referred?


………………………………………………………………………………………………………………………..


1.9.3.4- What was the outcome of the referral? e.g. more
tests, provisional diagnosis, definite diagnosis
(please specify)


………………………………………………………………………………………………………………………..


1.9.4- Other outcomes (please specify)


………………………………………………………………………………………………………………………..




Part B


YOUR COMMENTS ON COLLECTION OF PART A INFORMATION


Please make a note here of any mismatches between the information in the medical records and what you remember of the visit. Please also note if you think any information was missing from your notes.


PLEASE STATE:
Your gender (male or female) ………………………..


Your date of birth ………………………………………………………..


Your final diagnosis ……………………………………………………..


Date you examined your medical records …………………………..