Privacy Notice:
How we use, share and protect your personal information

Introduction

Research for the Future is an NIHR (National Institute for Health Research) Greater Manchester initiative to encourage people to take part in NHS health research, and to support researchers to recruit.

Our ‘Help BEAT’ campaigns invite people living with certain health conditions to register their details to find out about future research opportunities.

Research for the Future collect, store and processes personal information for the reasons outlined in this privacy notice. Personal information is information that relates to a living individual who can be identified from that data.

The Research for the Future programme is provided in partnership with NIHR Greater ManchesterNorth West EHealth, Health Innovation Manchester, and Northern Care Alliance NHS Group.

Research for the Future is hosted at Salford Royal NHS Foundation Trust, part of the Northern Care Alliance NHS Group. Salford Royal NHS Foundation Trust is registered with the Information Commissioner’s Office as a Data Controller reference Z5006706, as required by the Data Protection Act 1998 and the Data Protection Bill 2018.

Why do we keep information about you?

The personal information we hold about you is the information you provided when you first registered with Research for the Future, and which you may have updated since.

We hold your personal information so that we can keep you updated about research opportunities that you have told us you are interested in and that you might be suitable for.

We hold your NHS number as this is an identifier unique to you. Your NHS number helps us identify you correctly and confirm that the details we hold for you remain current. The Research for the Future team can never see any of your health or medical records.  Where you have not provided your NHS number we will obtain this from NHS Digital. NHS Digital is the national provider of information, data and IT systems for health and social care.

We keep information about the research opportunities we offer you. This helps to ensure that you receive the best possible service from us. It also helps us plan and manage the service we provide to support health research in the NHS.

Occasionally we will also use your personal details to provide you with additional information, for example our bi-annual newsletter, details about local events relating to your health condition(s) or a satisfaction survey.

Joining Research for the Future means you are agreeing to receive both information about research opportunities and the additional information referred to above. It is not possible to opt out of receiving this additional information.

You have the right to access the personal information about you held by Research for the Future, either to view the information in person, or to be provided with a copy.

What information do we hold about you?

Research for the Future does not have access to your medical record. We do not obtain information about you from any other source, other than your NHS number if you have not provided this at the time of your registration. The information we hold about you is

  • Identity details – name, date of birth, NHS number, gender, ethnicity
  • Contact Details –  address, telephone, email
  • Communication needs and any additional support required
  • Basic information about your health condition(s)
  • The types of research you are interested in
  • If you have advised us you are currently participating in a clinical trial and the expected date this finishes
  • How you heard about Research for the Future
  • The research opportunities we have informed you about and where known, whether you expressed interest in participating.

By providing us with your contact details, you agree we can use these to contact you by email, letter or telephone.

How will we keep your information secure and confidential?

We take data protection extremely seriously. All members of staff working in the NHS and other healthcare organisations have a legal duty of confidentiality to keep your information strictly confidential (unless in extreme circumstances where your safety or that of others is compromised). Everyone working for Research for the Future is employed by the NHS and subject to the Common Law Duty of Confidence.

The personal information you provide and your Research for the Future record is held on a secure, electronic NHS database at Salford Royal NHS Foundation Trust and kept in accordance with current legislation. Access to the database is strictly limited. Only the Research for the Future team has access to it. All Research for the Future staff are employed by the NHS and are trained to handle your information correctly and protect your confidentiality and privacy.

The information you have provided us with will only be used for the purposes agreed with you. The Research for the Future team will never pass your details to anyone else unless you have specifically asked them to do this or in circumstances where the law requires or allows us to do so.

How long do we keep your personal information for?

The information we hold about you is only kept for as long as you are registered with Research for the Future. If you inform us you no longer wish to be registered we will delete all information we hold about you ‘without trace’. Should you wish to re-join in the future, you would need to re-register all your details.

Your NHS number allows us to ensure that the postal address details we hold for you remain current. If your NHS number highlights a possible discrepancy to your postal address we will contact you.

Where NHS Digital confirms a person is deceased, all their details are removed “without trace” from the Research for the Future database.

What laws are relevant to the handling of personal information?

  • The General Data Protection Regulation (GDPR) and the Data Protection Act 2018
  • The Human Rights Act 1998
  • Freedom of Information Act 2000
  • Computer Misuse Act 1998
  • Access to Health Records Act 1990
  • Common law Duty of Confidentiality
  • NHS Codes of Practice

Is your Research for the Future record shared?

We never share your Research for the Future record or pass on your personal information without your explicit consent to do so.

Your information will never be used or sold to anyone for direct marketing purposes.

There are certain circumstances where the organisation is allowed to share information. This can be due to our obligations to comply with legislation or a duty to comply with any court orders which may be imposed.

Any disclosures of personal data are always made on a case by case basis, using the minimum personal data necessary for the specific purpose and circumstance and with the appropriate security controls in place. Information is only shared with those agencies and bodies who have a ‘need to know’ or where you have given explicit consent for us to do this.

To determine whether Research for the Future can help recruit to a research opportunity, anonymised and collated database demographics are provided to researchers and other organisations planning a study.  This enables them to determine whether sufficient numbers of people meeting the main study criteria (eg age, gender) exist on the database.  Your individual personal details or Research for the Future record is never shared with research teams.

All the details you provided to Research for the Future when you registered are held on a secure NHS database, held at Salford Royal NHS Foundation Trust. The database is designed and maintained by Research for the Future’s partner organisation North West EHealth. A Data Processing Contract exists between Salford Royal NHS Foundation Trust and North West EHealth to ensure that your information can only be shared in a way that complies with all relevant legislation.

What are your rights under GDPR?

Under the General Data Protection Regulation (GDPR) you have a number of rights:

  • That your rights are communicated to you in such a way as to be open, honest and easy to read and understand
  • You should be informed which data we hold has been collected from you and that which has been collected from others
  • You have a right of access to the data we hold on you.
  • You have the right to have mistakes or errors in your data corrected which includes having missing data completed.
  • You have the right of erasure from the Research for the Future database also known as ‘the right to be forgotten’. Please note: a request for removal from the Research for the Future database will delete your Research for the Future record only and not any other medical records or data provided as part of a research study or clinical trial you are currently or have previously, participated in.
  • You have the right to restrict processing. This means you can stop your data from being used under certain circumstances.
  • You have the right of data portability. This is to have your data provided to you in a format easily read by a commonly used computer program.
  • You have the right to object under certain circumstances to your data being processed.
  • You have the right to prevent automatic decision making ( when a computer makes a decision about you).
  • You have the right to prevent profiling. This is when the recording and analysis of a person’s psychological and behavioural characteristics is used. However health profiling is sometimes essential to help us support wellness.
  • You have a right to complain and contact details are written at the end of this document.

Essential Contacts

Research for the Future

Research for the Future can be contacted on research.future@srft.nhs.uk

The Data Controller

The Data Controller for the Northern Care Alliance, Sir David Dalton, can be contacted on data.controller@srft.nhs.uk

The Data Protection Officer

The Data Protection Officer for the Northern Care Alliance can be contacted on dataprotection.officer@srft.nhs.uk

The Caldicott Guardian

The Caldicott Guardian for the Northern Care Alliance can be contacted on caldicott.guardian@srft.nhs.uk

Freedom of Information Requests

The Freedom of Information team for the Northern Care Alliance can be contacted on foirequest@srft.nhs.uk or by telephone on 0161 206 7251

Subject Access Requests

To access your Research for the Future record, please contact: – informationsecurity&dataprotection@srft.nhs.uk or by telephone on 0161 206 1130

The Information Commissioner

You have the right at any time to complain about how we have processed your data by contacting the Information Commissioner: –

The Information Commissioner’s Office (ICO)
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Telephone: 0303 123 1113 or 01625 545745

Information Commissioner’s Office website (www.ico.org.uk)

Changes to this Privacy Notice

This policy will be reviewed on an annual basis. Next review due September 2019