Data Privacy Notice

Why we have the information provided when taking a PSA test.

Data is collected via the consent forms that we in GFCT and our partner groups use when individuals have a PSA test. The vast majority of the time, this is at one of the organised events facilitated by ourselves or one of our partner groups, such as PCaSO. The individual cannot have a blood sample taken for a PSA test unless they have filled in one of these consent forms and have signed and dated it as consent to proceed.

This data is then processed by loading the information onto a database owned by GFCT and reconciling this information with the results from the designated laboratory that have processed the blood sample and created a PSA result. From the amalgamated information a result letter (Green, amber or red depending on the PSA result and agreed thresholds) is sent to the individual using the contact information from the consent form.

Some of the other information from the consent form may be used to decide whether a different letter (green, amber or red) may be sent. For example, certain medications identified as being used by the individual on the consent form can impact the PSA result and therefore potentially go over a threshold, rendering a different letter being sent. 

What we do with that information

The original consent forms are shredded once the information has been transferred to the database and has been verified. 

Statistics are updated by summarising the event data, not using any of the personal data (e.g. Total numbers of red, amber and green letters for the event).  

The red and amber forms are kept as reference when a letter is sent enquiring whether the individual had followed up an abnormal PSA result with their GP (After 6 months for a red letter and 12 months for an amber letter).

Why we keep the information

The information we add to the GFCT database facilitates the sending out of the results letters and is the legal ground as our legitimate interest to be able to provide this service. This information on the database is kept indefinitely as reference, should the individual have another test with us (Unless we have a request from the individual to remove their personal data).

It is encrypted and kept securely on the GFCT premises.

Other parts of the service we provide include:

• Providing an ‘amber alert’ letter – If an individual has had a test processed with us before, when the latest test results are added the test results history is referenced to identify if a current green letter threshold may be exceeded in the future based on the trends of an increase in the PSA score. This amber letter identifies the list of previous PSA test results and recommends the individual to have another test to see if the upward trend continues as it may suggest an amber letter in the near future.
• If an individual has a red letter and has had a test processed by us before, an information sheet listing all the previous test results is also sent with the red letter. This is advised to be shown to their GP when they next have an appointment.
• An individual may enquire of their history of results at any time, which we can provide directly from the database once confirmation received of the person’s details.
• As described previously, a follow up letter is sent to any person receiving a red or amber letter enquiring as to how they have got on with any discussions with their GP and treatments. This is informal and uses the person’s name, address, test result and where they had the test from the database to send the letter. If the person responds (Of which there is no obligation) then the statistics are updated to reflect any treatments the person has advised they are undertaking with out identifying the person e.g. a total number of how many who are on Active Surveillance for example.

The database information on the tests may be collectively used for statistical analysis. This data never uses any personal data (e.g. just the test result and age, not relating to name, dob, address or other means). Any data that is forwarded for research purposes is de-personalised e.g. no contact or personal references in the data. This may mean for example numbers of high results in ethnic cohorts.

The data will not be transferred out of the EU.

Contact details from the database may be used to contact individuals to indicate an upcoming PSA testing event in their area or inform them of the work of the charity. This could be via emails based on location and will always have the facility to ‘unsubscribe’ i.e. to not have their emails used for this purpose again.

The GFCT charity will not provide this personal information to any third party agencies and will also not use personal information to directly contact individuals for any fund-raising or marketing purposes.