Storing your data

At Triumph Over Phobia we fiercely respect the autonomy of our members and value their right to privacy.  This ethos underpins any decisions that we make in relation to the collection, storage, and usage of our member’s therapeutic data.

In summary, we don’t ask you to provide us with information unless we think there is a clear and tangible therapeutic benefit to doing so.  We don’t do anything with your therapeutic data that you haven’t consented to, it is always anonymous for any evaluative purposes, and we understand that the data we collect from you is personal and sensitive.  We treat this data as something that is inherently yours, and never ours.

To find out more information relating to how we collect, store, and use our members data, please read the detailed information below.

Why do we collect data?

The support that Triumph Over Phobia provides to our members is based upon decades of rigorous scientific research that seeks to understand why people might experience OCD or phobias, and how to best support people with these difficulties.

A key factor in developing this understanding has been the careful and considered collection of therapeutic data.  Collecting data before, during, and after a therapeutic intervention allows TOP UK, or approved partners with expertise in service evaluations or data analysis, such as healthcare professionals and researchers to identify what types of support best improve the wellbeing of a person experiencing OCD of Phobic difficulties.

At Triumph Over Phobia we recognise that we are responsible for ensuring the therapeutic support we provide to our members is helpful, and follows the best available guidance.  As such we aim to routinely evaluate the therapeutic data that we collect to assess the effectiveness of our service and ensure we are appropriately meeting the needs of our members.  Sometimes this evaluation will be conducted by specific staff members of TOP UK, other times it is conducted by external individuals that adhere strictly to TOP UK’s data management ethos.  For example if an evaluation is being conducted by an external individual, they will have been deemed appropriate to conduct the evaluation by TOP UK due to their expertise in data analysis, and signed an agreement to adhere to our data policies. 

Collecting this data also enables us to provide individual feedback to our members in the form of a personalised recovery chart.  This is a unique document that visually displays a member’s wellbeing when they first joined TOP UK and how this has changed throughout their time with us.

As a regulated UK charity, Triumph Over Phobia is eligible to apply for charitable grants.  Funding bodies have a duty to ensure that any money they provide to charities will be used appropriately, and likely to achieve positive results. As part of Triumph Over Phobia’s funding applications we may include the statistical results of our, or third-party approved, anonymous service evaluations to demonstrate the effectiveness of our service and the wonderful changes that our members achieve.

What data do we collect?

At Triumph Over Phobia we use several psychological surveys to collect meaningful pieces of therapeutic data.

When anyone becomes a member of TOP UK we ask them to complete the Clinical Outcomes in Routine Evaluation – Outcome Measure (CORE-OM).  We also ask people to complete the CORE-OM when they leave the service or have been a member for 6 months.  The CORE-OM is a 34 item self-report questionnaire that assesses an individual’s perceived level of wellbeing, problems or symptoms, and life functioning.

For members that are experiencing OCD-related difficutlies we ask them to intermittently complete the Yale-Brown Obsessive Compulsive Scale.  This is a test that asks an individual to rate the severity of their obsessive-compulsive disorder symptoms.

For members experiencing a phobia we ask that they intermittently complete The Fear Questionnaire.  The Fear Questionnaire measures distress and avoidance across multiple areas of daily living that people with phobias commonly experience.

How do we store your data?

We understand that when you provide us with information relating to your recovery, you are entrusting us with something that is highly personable and sensitive, and that is why we take data protection incredibly seriously.

All of the survey data that we collect is anonymised by assigning each response with a unique membership code to protect your confidentiality.  The responses are then securely stored on the Microsoft Online servers using the most advanced encryption methods they can offer.

There are only a very small number of individuals involved with the charity that are able to access the stored collections of data.  Their need for access is solely due to their involvement in the anonymisation and evaluation processes that we undertake.

Access rights are time limited and security protocols are reviewed regularly, access is only granted / maintained if there is a genuine reason to do so.

What we will never do!

Triumph Over Phobia will never sell the anonymised data that we hold on our servers.  Although we are the custodians of the data and we use it for various therapetuic reasons, the data is not ours.  It is yours.

Your data sharing preferences will never affect the support that we provide to you.  Providing us with consent to collect, store, and use this data is a choice that you make, and only determined by you. It is perfectly fine if you refuse to provide us with any information, the support that we provide to you will absolutely not be affected.