GAIN Policy

Data Protection

Introduction
We hold personal data about our employees, clients, suppliers and other individuals for a variety
of charitable purposes. This policy sets out how we seek to protect personal data and ensure that
staff, trustees and volunteers understand the rules governing their use of personal data to which
they have access.

Definitions
Charity purposes The purposes for which personal data may be used by us:

• To process a donation you have made

• To process orders that you have submitted
• To carry out our obligations arising from any contracts entered into by you and us
• Dealing with entries into a competition
• Seeking you views or comments on the services we provide
• Notifying you of changes to our services
• Sending you communications which you have requested and that may be of interest to you
• Process a grant or job application

Personal data - Information relating to identifiable individuals, such as job applicants, current and
former employees, trustees, volunteers, members, patients, Medical Advisors, suppliers and
donors. Personal data we gather may include: individuals' contact details, educational
background, financial and pay details, details of certificates and diplomas, education and skills,
marital status, nationality, job title, and CV.

Sensitive personal data Personal data about an individual's racial or ethnic origin, political
opinions, religious or similar beliefs, physical or mental health or condition, criminal offences, or
related proceedings—any use of sensitive personal data should be strictly controlled in
accordance with this policy.

Scope
This policy applies to all staff, trustees and volunteers. You must be familiar with this policy and
comply with its terms. This policy supplements our other policies. We may supplement or amend
this policy by additional policies and guidelines from time to time. Any new or modified policy will
be circulated after being adopted.

Who is responsible for this policy?

The Data Protection Officer, Caroline Morrice has overall responsibility for the day-to-day
implementation of this policy.

Our procedures
Fair and lawful processing

We must process personal data fairly and lawfully in accordance with individuals’ rights. This
generally means that we should not process personal data unless the individual whose details we
are processing has consented to this happening.

The Data Protection Officer’s responsibilities:

• Keeping the board updated about data protection responsibilities, risks and issues
• Reviewing all data protection procedures and policies on a regular basis
• Ensuring understanding of the policy and provision of training as required
• Answering questions on data protection
• Responding to individuals requesting a copy of the data held on them
• Checking and approving with third parties that handle the charity’s data any contracts or
agreement regarding data processing
• Ensure all systems, services, software and equipment meet acceptable security standards
• Checking and scanning security hardware and software regularly to ensure it is functioning
properly
• Researching third-party services, such as cloud services the company is considering using
to store or process data
• Approving data protection statements attached to emails and other marketing copy
• Addressing data protection queries from clients, target audiences or media outlets

The processing of all data must be:

• Necessary to deliver our services

• In our legitimate interests and not unduly prejudice the individual's privacy
• In most cases this provision will apply to routine business data processing activities.

Privacy Notice
Our Website contains a Privacy Notice to clients on data protection which:

• Sets out the purposes for which we hold personal data

• Highlights that our work may require us to give information to third parties
• Provides information on the right of access to the personal data that we hold about them

Sensitive personal data

In most cases where we process sensitive personal data we will require the data subject's explicit
consent to do this unless exceptional circumstances apply or we are required to do this by law.
Any such consent will need to clearly identify what the relevant data is, why it is being processed
and to whom it will be disclosed.

Accuracy and relevance

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We will ensure that any personal data we process is accurate, adequate, relevant and not
excessive, given the purpose for which it was obtained. We will not process personal data
obtained for one purpose for any unconnected purpose unless the individual concerned has
agreed to this or would otherwise reasonably expect this.

Individuals may ask that we correct inaccurate personal data relating to them. If you believe that
information is inaccurate you should record the fact that the accuracy of the information is disputed
and inform the DPO, Caroline Morrice

Your personal data

You must take reasonable steps to ensure that personal data we hold about you is accurate and
updated as required. For example, if your personal circumstances change, please inform the Data
Protection Officer so that they can update your records.

Data security
You must keep personal data secure against loss or misuse. Where other organisations process
personal data as a service on our behalf, the DPO will establish what, if any, additional specific
data security arrangements need to be implemented in contracts with those third party
organisations.

Storing data securely

• printed paper should be kept in a secure place where unauthorised personnel cannot
access it
• Printed data should be shredded when it is no longer needed
• Data stored on a computer should be protected by strong passwords that are changed
regularly. We encourage all staff to use a password manager to create and store their
passwords.
• Data stored on CDs or memory sticks must be locked away securely when they are not
being used
• The DPO must approve any cloud used to store data
• Servers containing personal data must be kept in a secure location, away from general
office space
• Data should be regularly backed up in line with the company’s backup procedures
• Data should never be saved directly to mobile devices such as laptops, tablets or
smartphones
• All servers containing sensitive data must be approved and protected by security software
and strong firewall.

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Data retention
We must retain personal data for no longer than is necessary. What is necessary will depend on
the circumstances of each case, taking into account the reasons that the personal data was
obtained, but should be determined in a manner consistent with our data retention guidelines.

Transferring data outside of Europe

The information provided to GAIN may be transferred to countries outside the European Union
(EU). By way of example, this may happen if any of our servers are from time to time located in a
country outside of the EU. These countries may not have similar laws to the UK. By submitting
your personal data, you are agreeing to this transfer, storing or processing. If we transfer your
information outside the EU in this way we will take steps to ensure that appropriate security
measures are taken with the aim of ensuring your privacy rights continue to be protected as
outlined in this policy.
If you use our services while you are outside the EU, your information may be transferred outside
the EU in order to provide you with those services.

Subject access requests

Please note that under the General Data Protection Regulation, individuals are entitled, subject to
certain exceptions, to request access to information held about them.
If you receive a subject access request, you should refer that request immediately to the DPO. We
may ask you to help us comply with those requests.
Please contact the Data Protection Officer if you would like to correct or request information that
we hold about you. There are also restrictions on the information to which you are entitled under
applicable law.

Processing data in accordance with the individual's rights

GAIN will abide by any request from an individual not to use their personal data for direct
marketing purposes and notify the DPO about any such request.

GAIN will not send direct marketing material to someone electronically (e.g. via email) unless an
existing business relationship with them in relation to the services being marketed exists.

GDPR provisions
Privacy Notice - transparency of data protection

This Policy explains when and why we collect personal information about people, how we use it,
the conditions under which we may disclose it to others and how we keep it secure.

We may change this Policy from time to time so please check this page occasionally to ensure
that you’re happy with any changes.

Any questions regarding this Policy and our privacy practices should be sent by email
to [email protected] or by writing to Freepost RTHK-KGYY-LKYB, Guillain
Barre & Associated Inflammatory Neuropathies, Woodholme House, Heckington Business Park,
Station Road, Heckington, SLEAFORD NG34 9JH. Alternatively, you can telephone 01529
469910.

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Who are we?

We’re GAIN, the country’s only charity dedicated to helping everyone affected by GBS, CIDP or
one of the associated inflammatory neuropathies. GAIN is a registered charity (no. 1154843 &
SCO39900). The registered address is Woodholme House, Heckington Business Park, Station
Road, Heckington SLEAFORD NG34 9JH.

How do we collect information from you?

We obtain information about you when you contact us in writing, in person or use our website, for
example, when you contact us about products and services, to make a donation, or if you register
to receive our magazine.

What type of information is collected from you?

The personal information we collect might include your name, address, email address, IP address,
and information regarding what pages are accessed and when. If you make a donation online or
purchase a product from us, your card information is not held by us, it is collected by our third
party payment processors, who specialise in the secure online capture and processing of
credit/debit card transactions, as explained below.

How is your information used?

We may use your information to:

• process a donation that you have made;

• process orders that you have submitted;
• to carry out our obligations arising from any contracts entered into by you and us;
• dealing with entries into a competition;
• seek your views or comments on the services we provide;
• notify you of changes to our services;
• send you communications which you have requested and that may be of interest to you.
These may include information about campaigns, appeals, other fundraising activities,
promotions of our goods and services;
• process a grant or job application.

We review our retention periods for personal information on a regular basis. We are legally
required to hold some types of information to fulfil our statutory obligations (for example the
collection of Gift Aid). We will hold your personal information on our systems for as long as is
necessary for the relevant activity, or as long as is set out in any relevant contract you hold with
us.

Who has access to your information?

We will not sell or rent your information to third parties.

We will not share your information with third parties for marketing purposes.

Third Party Service Providers working on our behalf: We may pass your information to our
third party service providers, agents subcontractors and other associated organisations for the
purposes of completing tasks and providing services to you on our behalf (for example to process
donations, handle direct debits and send you mailings). However, when we use third party service
providers, we disclose only the personal information that is necessary to deliver the service and

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we have a contract in place that requires them to keep your information secure and not to use it for
their own direct marketing purposes. Please be reassured that we will not release your information
to third parties for them to use for their own direct marketing purposes, unless you have requested
us to do so, or we are required to do so by law, for example, by a court order or for the purposes
of prevention of fraud or other crime.

Third Party Product Providers we work in association with: We work with various third party
product providers to bring you a range of quality and reliable products.

When you are using our secure online donation pages, your donation is processed by a third party
payment processor, who specialises in the secure online capture and processing of credit/debit
card transactions. If you have any questions regarding secure transactions, please contact us.

We use a mailing house to print and distribute bulk mailings such as the magazine. They
undertake not to use or sell your data.

Your choices

You have a choice about whether or not you wish to receive information from us. If you do not
want to receive direct marketing communications from us about the vital work we do for people
affected by GBS, CIDP and the associated inflammatory neuropathies and our exciting products
and services, then you can select your choices by ticking the relevant boxes situated on the form
on which we collect your information.

We will not contact you for marketing purposes by email, phone or text message unless you have
given your prior consent. We will not contact you for marketing purposes by post if you have
indicated that you do not wish to be contacted. You can change your marketing preferences at any
time by contacting us by email: [email protected] or telephone on 01529 469910.

How you can access and update your information

The accuracy of your information is important to us. We’re working on ways to make it easier for
you to review and correct the information that we hold about you. In the meantime, if you change
email address, or any of the other information we hold is inaccurate or out of date, please email us
at: [email protected] , or write to us at: Freepost RTHK-KGYY-LKYB, Guillain Barre &
Associated Inflammatory Neuropathies, Woodholme House, Heckington Business Park, Station
Road, Heckington, SLEAFORD NG34 9JH. Alternatively, you can telephone 01529 469910.

You have the right to ask for a copy of the information GAIN hold about you (we may charge £10
for information requests) to cover our costs in providing you with details of the information we hold
about you.

Security precautions in place to protect the loss, misuse or alteration of your information

When you give us personal information, we take steps to ensure that it’s treated securely. We do
not hold information about your credit/cards as we use third party processors.

Non-sensitive details (your email address etc.) are transmitted normally over the Internet, and this
can never be guaranteed to be 100% secure. As a result, while we strive to protect your personal
information, we cannot guarantee the security of any information you transmit to us, and you do so
at your own risk. Once we receive your information, we make our best effort to ensure its security
on our systems. Where we have given (or where you have chosen) a password which enables you

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to access certain parts of our websites, you are responsible for keeping this password confidential.
We ask you not to share your password with anyone.

Profiling
We may analyse your personal information to create a profile of your interests and preferences so
that we can contact you with information relevant to you. We may make use of additional
information about you when it is available from external sources to help us do this effectively. We
may also use your personal information to detect and reduce fraud and credit risk.

Links to other websites

Our website may contain links to other websites run by other organisations. This privacy policy
applies only to our website‚ so we encourage you to read the privacy statements on the other
websites you visit. We cannot be responsible for the privacy policies and practices of other sites
even if you access them using links from our website.

In addition, if you linked to our website from a third party site, we cannot be responsible for the
privacy policies and practices of the owners and operators of that third party site and recommend
that you check the policy of that third party site.

16 or Under
We are concerned to protect the privacy of children aged 16 or under. If you are aged 16 or under‚
please get your parent/guardian's permission beforehand whenever you provide us with personal
information.

Transferring your information outside of Europe

As part of the services offered to you through this website, the information which you provide to us
may be transferred to countries outside the European Union (“EU”). By way of example, this may
happen if any of our servers are from time to time located in a country outside of the EU. These
countries may not have similar data protection laws to the UK. By submitting your personal data,
you’re agreeing to this transfer, storing or processing. If we transfer your information outside of the
EU in this way, we will take steps to ensure that appropriate security measures are taken with the
aim of ensuring that your privacy rights continue to be protected as outlined in this Policy.

If you use our services while you are outside the EU, your information may be transferred outside
the EU in order to provide you with those services.

Criminal record checks

Any criminal record checks are justified by law. Criminal record checks cannot be undertaken
based solely on the consent of the subject.

Data portability
Upon request, a data subject should have the right to receive a copy of their data in a structured
format. These requests should be processed within one month, provided there is no undue burden
and it does not compromise the privacy of other individuals. A data subject may also request that
their data is transferred directly to another system. This must be done for free.

Right to be forgotten
A data subject may request that any information held on them is deleted or removed, and any third
parties who process or use that data must also comply with the request. An erasure request can
only be refused if an exemption applies.

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Privacy by design and default
Privacy by design is an approach to projects that promote privacy and data protection compliance
from the start. The DPO will be responsible for conducting Privacy Impact Assessments and
ensuring that all IT projects commence with a privacy plan. When relevant, and when it does not
have a negative impact on the data subject, privacy settings will be set to the most private by
default.

Data audit and register

Regular data audits to manage and mitigate risks will inform the data register. This contains
information on what data is held, where it is stored, how it is used, who is responsible and any
further regulations or retention timescales that may be relevant.

Reporting breaches
All staff, trustees, volunteers and members have an obligation to report actual or potential data
protection compliance failures to the DPO. This allows GAIN:

• Investigate the failure and take remedial steps if necessary

• Maintain a register of compliance failures
• Notify the ICO of any compliance failures that are material either in their own right or as part
of a pattern of failures

Monitoring
Everyone must observe this policy. The DPO has overall responsibility for this policy and will
monitor it regularly to make sure it is being adhered to.

Consequences of failing to comply

We take compliance with this policy very seriously. Failure to comply puts both you and the
organisation at risk.

The importance of this policy means that failure to comply with any requirement may lead to
disciplinary action under our procedures which may result in dismissal. A solicitor in breach of
Data Protection responsibility under the law or the Code of Conduct may be struck off.

If you have any questions or concerns about anything in this policy, do not hesitate to contact the
DPO.

Review of this Policy

We keep this Policy under regular review. This Policy was last updated in January 2018.

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