Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

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Privacy Notice 

 

use MY data is an unincorporated organisation without legal status

use MY data is an organisation without legal status, operating to our agreed Ways of Working, which describe how we are managed on behalf of our Members. 

As an unincorporated organisation, having no separate legal personality, the data controllership comprises the members of the Secretariat, as those assigned to manage the affairs of
use MY data on behalf of its members.

Details of how we operate in compliance with GDPR are shown below.

 

The only personal data that we hold is about our Membership or delegates for our events

use MY data needs to consult its Membership about issues relating to patient data.  To do this, we need the email addresses and names of our Membership, so that we can ensure we give everyone an opportunity to give their views. We do not need other information about our Membership.

To allow us to monitor the composition of delegates that attend our webinars, we ask for their name and email address, plus the type of registration (Charity, Commercial, Health Professional, Patient, Carer or Relative, Public Sector, Researcher or Other) and which part of the UK they are from.  

 

We do not hold any patient data.

 

We process data in the legitimate interests of our Membership

We only use personal data if it is in our Membership’s legitimate interests.  We use data in ways that are necessary in order to run use MY data.  We use the minimum amount of data that we need to.  At any time our Membership can request that their membership is cancelled and their data will be removed from our records.  This can be done by emailing coordinator@useMYdata.org.uk 

We use data to contact our Membership to ensure they are aware of topics related to patient data and can all equally contribute to the agenda.

We do not share our Membership's details.

All use MY data emails are held on a managed server in the UK run by the hosting agency 123-reg.

 

We store personal data securely

The Coordinator (who sits within the Secretariat) keeps an up-to-date record of Membership contact details on their computer.  Our computers are encrypted and password protected. All computers have up-to-date software to protect them from malware and viruses. No information is stored on paper.

We use the Zoom registration system for our webinars. When delegates register, we ask for their name and email address.   To allow us to monitor the composition of delegates that attend our webinars, we also ask for the type of registration (such as Charity, Commercial, Health Professional, Patient, Carer or Relative, Public Sector, Researcher or Other) and which part of the UK they are from.  The Secretariat holds a list of all delegates who attend.  This list is used to update previous delegates about future webinars.  At any point delegates can ask to be deleted from this list by contacting the Events Manager at events@useMYdata.org.uk  

 

We protect Membership details in emails

When the Secretariat communicates with our Membership via email, they blind copy email addresses so Membership details are protected.

 

We only keep personal data for active Membership

We only keep data to help in our work with Membership.  We hold the details of our Membership until they terminate their membership, at which point we delete their details.

If use MY data ceases its work we will ask our Membership if they want their details passed on to a different organisation.  Our default position will be that all records are deleted.

 

Contact details: coordinator@useMYdata.org.uk 

Updated 28 July 2021

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