Privacy Policy APRIL
GDPR – the General Data Protection Regulation – is a new EU law governing data protection, which will supersede the Data Protection Act in 2018.
The complete contents of APRIL charity's files will be soon archived in 2023 by the Wellcome Collection
The reason is as the founder, I am now in my 80's and there is no one able to take over running the charity.
To have the data archived by the Wellcome is a truly 'welcome' offer.
Their abundance of health and medical data helps research on a massive scale.
Their exhibitions are free and worth visiting in the large building almost opposite Euston Station in London. Many students, including my own grandchildren, use their free library as a base for studies.
The Wellcome invites contributions from the public for stories
All emails we have printed if names are still visible will be archived for many years before being available for researchers.
We have many letters and emails now annonimised without any reference to a person's name or other named people.
We have used stats from information provided by those who have kindly contacted us with their personal stories to include in Qualitative Studies that exclude
personal details.
If anyone is concerned please email info at april . org.uk as a correct email address (not as it is written here to avoid spam)
We have received many stories from the public about adverse drug reactons.
We have used the experiences people have linked to adverse drug reactions, or following surgery, in our efforts to improve patient safety. For example 100 testimonies from women about the drug Dianette causing depression, annonimised, were eventually accepted by the MHRA as a reason to add warnings on the patient information leaflets. This took years of me literally nagging the director of the MHRA to read them.
We do not pester people who have kindly donated to support the charity, for more funds. We have never shared donors' names with any other organisation and never will.
APRIL rarely employed payed help and received funding in kind from Hewlett Packard, and family members. Also grants towards conferences and Wellbeing Workshops from the Lottery fund and a London funding organisation for local activities.
We do not use knowingly use cookies but cannot speak for other organisations that may be linked to the APRIL web site, as many do use cookies.
We have sometimes put bereaved parents in touch with each other, with their specific agreement. Being in touch with others who have suffered in a similar way is of great comfort for some people.
All the data we have received in letters, emails and via the BBC Action help line when people have called us following relevant programmes is kept safe. The Wellcome Archivists will not allow personal data to be available to the public for the required number of years that may be over 80 years in some cases.
We have used some of the experiences told to us in an anonymised format, in order to convince the authorities to increase warnings on the patient information leaflets (PILs). We hav succeeded in doing this for Dianette and thank all those who trusted us with their often heartbreaking stories.
Data Storage and Data Controller
Currently the only person with access to personal information is the founder of APRIL Millie Kieve..