Who we are?
The Neurological Alliance is a coalition of more than 80 organisations. We work together to improve services for people with neurological conditions. This work brings us into contact with people with neurological conditions and their carers, policy makers, people who design and deliver health services, health care and other professionals, voluntary organisations, the pharmaceutical industry and others in the health and care sector in England.
We want to maintain the trust and confidence of everyone who we work with and take great care to preserve your privacy and safeguard any personal details you give to us – both online and offline. This privacy notice explains how and why we collect your personal information, how we use it and how we keep it secure. We follow the requirements of the Data Protection Act 2018, and the six principles of the General Data Protection Regulations 2016.
By using our website or providing us with your personal information you are agreeing to this notice.
What information do we collect?
You give us your information when you join The Neurological Alliance as a member, use our website, apply to work for us, contact us by email or donate to us. Most typically, this information will include your name, your email address and any other contact details, and your organisation and role where relevant.
We may keep a record of the emails we send you, and we may track whether you receive or open them so we can make sure we are sending you the most relevant information. We may then track any subsequent actions online, such as signing up to an event.
Individual people who get involved in our work may occasionally share with us details about their health conditions or about their race, ethnicity or other personal and sensitive information. We always explicitly seek their permission to hold such information.
Your information will only be used for Neurological Alliance purposes and will not be passed on to other organisations. We do not directly fundraise from the general public. We do not hold personal health records or other patient data, and we do not hold data on children and young people.
Like most websites, we receive and store certain details whenever you use the Neurological Alliance website. Cookies mean that a website will remember you and any preferences you have entered. It also helps us to understand how you use our website, and where we can make improvements.
When you visit our website we may use a service called Google Analytics to collect standard internet log information and details of how you use the site. We do this to find out things like how many people visit the different parts of the site. This information is processed in a way which does not identify anyone.
Most of our events are only open to members, but we may also invite other individuals to attend from time to time. We also organise events on behalf of other partnerships we are involved in such as the National Neuro Advisory Group. When you register for an event organised by The Neurological Alliance, we collect some personal information, such as email address, job title, company name, dietary requirements and access requirements. We collect this information so we can communicate with you about the event, make sure that the event meets your needs, and to get your feedback after the event.
As part of event preparation, we will ask attendees to opt in to their names appearing on a list of delegates, for sharing with other attendees.
We use social media to broadcast messages and updates about events and news. We may reply to comments or questions you make to us on social media platforms.
We only send newsletter to Neurological Alliance members and selected partners who have agreed to join our database. We do not sell our email lists to anyone.
Patient experience survey
For 2018/19, our patient experience survey is being run by a consultancy company called Quality Health. Data collection, storage and processing for our patient experience survey is being undertaken by Quality Health on behalf of the Neurological Alliance. The purpose of collecting this data is to form an overall picture about the care and treatment people with neurological conditions receive. A full privacy statement is included at the point of data collection (on the printed or online survey). For more information please see Quality Health’s privacy notice.
How do we protect your data?
The Neurological Alliance is committed to keeping your personal data safe and secure. Personal data are held on Neurological Alliance’s Microsoft Sharepoint. This is managed and maintained by our IT support service FNS. FNS run regular cyber security assessments to ensure the Neurological Alliance networks and system, including data, are safe.
How do we keep your information up-to-date?
We want to make sure we have accurate information. We do this through a combination of ongoing updates of our records and larger scale but more infrequent exercises, including to remove personal information no longer needed. As part of this we may from time to time ask you for updated personal information.
How can you access your personal information?
You have legal rights over your personal information. For example, you can see it, amend it, ask us to change the way we handle it or have it removed from our records completely. If you want to exercise your rights you can contact us and we will respond to you within two weeks.
Changes to this Privacy Notice
This privacy notice was updated in October 2018 as we tightened our policies to meet the new General Data Protection Regulation.
The Neurological Alliance privacy notice will next be reviewed in September 2019.
If you would like to know more about Neurological Alliance data protection policy or procedures, or have any specific questions about the information we do or do not hold about you and what we do with your data please contact us.