ALSPAC/Children of the 90s privacy notice
In this privacy notice we:
1) Summarize how we use your information
2) Provide detail on our legal basis
3) Provide privacy notice information for all
4) Provide privacy notice information specific to researchers
5) Provide privacy notice information specific to study participants
1) HOW WE USE YOUR INFORMATION
This privacy notice tells you what to expect when ALSPAC (also known as ‘Children of the 90s’) collects your personal information. ALSPAC is a longitudinal birth cohort study. This is a type of research project that aims to identify the causes of why some people’s health, development or wellbeing are good, while others may face challenges. ALSPAC works by regularly asking a ‘cohort’ of about 15,000 families - originally from in and around Bristol - about all aspects of their life. ALSPAC also gathers information about these families from other sources (such as health records, or environmental records). ALSPAC processes these data to make sure they are as accurate as possible, as well organised as possible and to remove the risk that any person may be identified from the data. ALSPAC then share these processed data with researchers in order to conduct research aiming to improve the public good. These researchers can be based anywhere in the world.
ALSPAC is a research project run and owned by the University of Bristol. The University is the ‘data controller’ as defined in the Data Protection Act (the organisation who determines why and how personal data are processed). ALSPAC complies with the requirements of the General Data Protection Regulations (GDPR) and the Data Protection Act (2018) with regard to the collection, processing, storage and disclosure of personal information.
It applies to information we collect when you:
- Visit our website
- Post information on social media
- Complete an online proposal form
- Complete a data access agreement, data transfer agreement, material transfer agreement, confidentiality agreement or data user responsibilities agreement
- Submit a manuscript for review
- Phone, email or text us
- Complete our questionnaires via our website
- Book focus clinic appointments via our website
- Update your contact details via our website
- Return completed questionnaires, consent forms, reply slips or other written information
- Bio samples
- Collect data from routine official records (for example NHS and other health records; school, college and university education records; economic records; criminal conviction and official caution records; environmental, census and local authority neighbourhood data)
It also applies to the way we handle, process and store your information in:
- Sending mail and email
- Storing questionnaires and consent forms
- Finding participants who we lose contact with
- Providing research data for use in scientific research
We also provide you with further information on your privacy, confidentiality and anonymity in other parts of our website and, for participants, in the information we send you via post and email when we ask you to take part in clinics or questionnaires.
2) OUR LEGAL BASIS
Who controls the use of our data
ALSPAC is part of the University of Bristol, who is the Data Controller for the information directly collected by ALSPAC. ALSPAC is also the (joint) Data Controller for information about participants collected from routine administrative sources.
The University can be contacted at:
Data Protection Officer
University of Bristol
Bristol BS8 1QU, UK
Complaints or queries
ALSPAC aims to meet the highest standards when collecting and using personal information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving the way we handle your personal details.
This privacy notice is intended to be brief and clear, and does not cover every single way we handle your personal details in minute detail. However, we are happy to provide further information on request.
If you would like to complain about our handling of your data, contact the University’s Information Rights Officer via email at firstname.lastname@example.org.
Our legal basis:
ALSPAC’s purpose is to conduct scientific research that aims to improve the public good. This is part of the wider purpose of the University of Bristol to conduct research aiming to improve scientific understanding.
Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is:
1) performance of a task carried out in the public interest (Article 6(1)(e) in the GDPR); and, where sensitive personal information is involved:
2) scientific or historical research purposes or statistical purposes (Article 9(2)(j) in accordance with Article 89(1)).
The GDPR defines ‘sensitive personal information’ as information that reveals a persons racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership; and the processing of genetic data or biometric data for the purpose of uniquely identifying a person; data concerning health or data concerning sex life or sexual orientation.
This legal basis within GDPR and the Data Protection Act 2018 is separate to, and in addition to, our seeking consent to take part in the research process, which we use to help ensure our research is ethical and complies with other applicable laws.
3) PRIVACY NOTICE INFORMATION FOR ALL
Visitors to our websites
When someone visits our website we collect standard internet log information and details of visitor behavior patterns. We do this to find out things such as the number of visitors to the various parts of the site to help us monitor and improve our site. We collect this information in a way which does not identify anyone. We do not make any attempt to find out the identities of those visiting our website. We will not associate any data gathered from this site with any personally identifying information from any source. If we do want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We do not generally provide any personal information about users of our website to third parties or other users.
Posting information on social media
ALSPAC maintains a number of social media presences, most notably on Facebook, Twitter and YouTube. Users of these social media presences should be aware that any information posted is covered by the terms and conditions of the respective site and is in the public domain.
Please be aware that you have a responsibility to ensure that information you post on our social media sites is within the bounds of the law.
Accessing and updating personal information
As an individual, you have a right under the GDPR to update or amend the personal information we hold about you, to ask us to remove your personal information from our records and to obtain information from us, including a description of the personal data that we hold on you. For more information about this please contact us.
ALSPAC aims to be as open as it can be in terms of giving people access to their personal information. Individuals can find out if we hold any personal information by making a ‘subject access request’ under the Data Protection Act 2018. If we do hold information about you, we will:
- give you a description of it;
- tell you why we are holding it;
- tell you who it could be disclosed to; and
- let you have a copy of the information in an intelligible form.
To make a request to us for any personal information we may hold you need to put the request in writing to the address provided on our website.
If you agree, we will try to deal with your request informally, for example by providing you with the specific information you need over the telephone. If we do hold information about you, you can ask us to correct any mistakes.
Links to other websites
This privacy notice does not cover the links on our website which link to other sites. We encourage you to read the privacy statements on the other websites you visit.
How to contact us
4) INFORMATION FOR ALSPAC RESEARCHERS ONLY
We will never sell your personal information to other organisations.
The accuracy of your information is important to us. If you believe any of the other information we hold concerning you is out of date, please let us know.
Online proposal form and supporting documents
This data includes the name and contact details of the Principal Applicant, and those of any co-applicants and any other data users on the proposal and supporting documents. We will use this data so we can communicate with you about your proposal. We may also collect your personal details on a number of supporting documents related to your proposal. These include: data access agreements, data transfer agreements, material transfer agreements, confidentiality agreements or data user responsibilities agreements, and ALSPAC ethics and law committee application forms. We may also collect your personal details when you submit a manuscript for review.
This data includes your name and email address. We use this data so that we can communicate with you and keep you up to date with news and information from us. We have collected this data from previous proposal forms submitted by researchers applying to use our data.
5) INFORMATION FOR CHILDREN OF THE 90S STUDY PARTICIPANTS ONLY
Our commitment to you
Taking part in the project is voluntary and you are free to withdraw at any time without giving a reason. You will not be identified from the research – researchers do not see your name with your information – they just see your barcode ID number. Every research project is checked to make sure it meets the highest scientific and ethical standards. In the same way as a doctor who treats you is bound to keep your information confidential, Children of the 90s, and all the researchers we work with, are bound to keep your information confidential. There are independent experts whose job it is to look at what we do and how we do it to make sure your rights are protected. We do not do research with the aim of commercial gain - all our research aims to benefit society and is not for profit
Changing your mind
If you wish to change the way you participate – or stop participating – in Children of the 90s you can do so at any time. More information on withdrawing from the study is available at http://www.bristol.ac.uk/alspac/participants/ethics/changingyourmind/. Please contact us via the details on our website to let us know.
Phoning, emailing or texting us
When you phone, email or text us we will verify your identity and ensure that you are a study participant before proceeding. Any information that you give us will be recorded in our contact management system (Arcadia) unless you request otherwise. We will also record relevant details (such as date or time) of the phone call, email or text message.
The University’s third party email provider is Microsoft (Outlook). Please be aware that you have a responsibility to ensure that any email you send to us is within the bounds of the law.
We use a variety of third party mobile network providers.
Completing questionnaires via our website
When you login to the questionnaire portal of our website we will collect standard internet login information and details of visitor behavior patterns to help us understand how people are accessing different parts of the questionnaire. We will also use this information to decide if you have completed your questionnaire or not, and may then contact you to remind you to complete your questionnaire if you have not already done so.
If we do want to collect personally identifiable information through our website, we will be up front about this. For example, at the end of the questionnaire we will make it clear when we collect personal information such as your date of birth and will explain what we intend to do with it.
When completing your questionnaire online, all information you provide is confidential. Your research data and personal details are kept separately. No researcher will see your name linked to your research data.
Online questionnaires are administered on University of Bristol owned computer systems.
Completing virtual data collection
When you are invited to complete research data collection virtually (using video, or audio)we will make it clear what personal information is required and we will explain what we intend to do with it.
The University has number of recommended third party communications providers including Microsoft (Teams and Skype) and Zoom.
We use a variety of third party mobile network providers.
Booking clinic appointments via our website
When you login to the clinic booking portal of our website we will collect standard internet login information and details of visitor behavior patterns to help us understand how people are accessing different parts of the booking system.
If we do want to collect personally identifiable information through our website, we will be up front about this. For example, when you book your clinic appointment online we will make it clear when we collect personal information such as your date of birth and will explain what we intend to do with it. When you book your clinic appointment online we will then use this information to contact you and update your personal records in our contact management system (Arcadia).
The clinic booking system is administered on University of Bristol owned computer systems.
Updating your contact details via our website
When you update your contact details via the online form on our website and hit ‘submit’, your details will be saved as a survey response in our secure Microsoft Form. This form is only accessible to the ALSPAC Cohort Maintenance team staff who will then update your contact details on our contact management system. Your information in the Microsoft Form response will then be deleted.
Where you have given us this information, we will store personal contact details of a friend or family member. Please ensure you have their permission for us to store their contact details and for us to contact them if necessary. We store this information on our contact management system. We will use this information to contact your friend or family member if we are unable to get in touch with you.
Returning completed questionnaires, consent forms, reply slips or other written information
When you return an item to us in writing (for example a questionnaire, consent form, reply slip or written letter) we will treat this information as confidential. Your personal details will be kept separately from your research data. We will not pass your personal details to third parties without your consent except under the circumstances described below.
Recording and transcribing interviews
When research data is required to be recorded (audio or video) we will make this clear, explain what we intend to do with it and ask for your consent. Due to the difficulty in guaranteeing that a recorded interview will not contain personally identifiable data, we treat all as if they do.
Interviews are recorded on encrypted devices (such as Olympus DS-3500 digital recorder, encrypted smart phone/tablet/laptop). Interview recordings may be securely transcribed by a University of Bristol member of staff, or by an external transcription company approved by the University to process data subject to the Data Protection Act.
How we will use your personal details
We will keep your personal details confidential, and separate from your research data. Your personal details will not be shared with third parties except for certain service providers working on our behalf.
These third parties include:
- FileCentre and Commercial Transfer (for long-term storage of questionnaires)
- Gemini West, Data Driven Promotions and TopLink Envelopes (for printing and collating large mailings)
- Data 8 and FinderMonkey (for conducting searches of public databases when we lose touch with you)
- Shred-It (for confidential waste disposal)
- GVS Gift Voucher Shop (for printing and sending ‘thank you’ vouchers)
- Peak Answers (for making reminder phone calls)
- Three Cherries, Core Telecom and Voodoo SMS (for sending mass text messages)
- Ounce Technology (for administering online cognitive tasks)
- Ian Allan Travel (for travel and accommodation bookings with third party providers)
- VCars (for taxi bookings for travel to and from our clinic)
- Bristol Transcription Services (for transcription of video/audio recordings)
We will only share your personal details with these third parties under strict conditions set out in a legally binding data processing agreement. This offers assurances about the use, access and security of any personal data disclosed and does not allow any onward disclosure or sales of personal data by the third party. We also use Royal Mail for posting questionnaires, invitations to take part and other correspondence.
Some research projects need information based on locations - such as where you live, where you work, which school you went to etc. Children of the 90s use addresses and postcodes to produce new information - such as levels of air pollution near your home, or crime rates in your neighbourhood - which we then give to researchers. We do this in a way where the information about you that is used in our research (such as the information you give in questionnaires, or at focus clinic visits) cannot be linked back to your address.
How we will use your research data
We will only collect your data with permission, for example by asking you to attend a clinic or complete a questionnaire. Once we have collected it, it will be processed for research use. It will be stored securely and confidentially. We will de-identify the research data, so you cannot be identified from it. We will then provide this information to researchers on request and only under strict conditions. This process is described in detail at http://www.bristol.ac.uk/media-library/sites/alspac/documents/researchers/data-access/ALSPAC_Access_Policy.pdf A list of approved research projects using your data is available here: https://proposals.epi.bristol.ac.uk/?q=proposalSummaries
ALSPAC will not use this data for research purposes without asking for your permission. We will not attempt to use social media to collect your personal details.
Social media will only be used as a communication tool between us and you. We may store your Facebook URL, Facebook email address or Twitter username so that we may continue to communicate with you. This piece of administrative data will be stored securely in our contact management database, along with your other contact details that you have provided to us in the past.
Collecting data from routine official records
A great deal of information is collected and stored about all of us in our official records. This information gives a detailed picture of many aspects of our life. Children of the 90s researchers use this information alongside the information collected about you (for example, in questionnaires or at ‘focus’ clinics). Through doing this, researchers study questions about why people lead different lives and why some peoples life experiences are positive whilst for others they are less so.
Where we have permission Children of the 90s will identify and take a copy of parts of your official records; including those held by the NHS, the education system and the benefits, tax and earnings department. For some of you we will also collect information about criminal convictions and cautions. We call this way of collection information ‘data linkage’. There is a lot more information about data linkage on the Children of the 90s website at http://www.bristol.ac.uk/alspac/participants/playingyourpart.
Before we start linking to your official records we will write to you explaining how this works and giving you the opportunity to object. We have already done this for the young adults (those born in the early 1990s) in the study. We fully accept your right to decide that you don’t want us to access your records, and if you feel this way it is important that you tell us. For more information about how we use your linked records please visit http://www.bristol.ac.uk/alspac/participants/usingyourrecords/
Please let us know if you have any questions or if you object to your records being used in this way. You can call us on 0117 3310033, email email@example.com or write to: Data Linkage Team, Children of the 90s, Oakfield House, Oakfield Grove, Bristol BS8 2BN.
We will not provide the organisations who keep your records with any of the information you have given Children of the 90s; for example, information from questionnaires or given at ‘focus’ clinic visits. Collection of this information by Children of the 90s will not affect the services you receive from government departments in any way. To make sure we accurately identify your records we will use your personal details (e.g. name, address, date of birth, NHS ID) to make an accurate link to the equivalent information in your official records.
The UK Longitudinal Linkage Collaboration
Children of the 90s are contributing to the UK Longitudinal Linkage Collaboration (UK LLC). This is a UK wide initiative to develop a central secure research IT system which will hold the de-identified study data from many longitudinal studies.
The UK LLC is run by the University of Bristol and all data remains in the UK at all times. The University of Bristol are Data Controller for both the UK LLC and Children of the 90s.
The UK LLC is described in more detail here: TBC URL FOR UKLLC PIS ON ALSPAC WEBSITE and on the UK LLC website (https://ukllc.ac.uk).
To enable this to happen, Children of the 90s will provide participant identifiers to the NHS agency in Wales with responsibility for sharing data with researchers (Digital Health and Care Wales: https://dhcw.nhs.wales/). This is the same process that is already used in Children of the 90s. In turn, this agency will share the identifiers with the other UK NHS agencies and UK statistical authorities with responsibility for sharing health data with researchers:
- NHS Digital in England: https://digital.nhs.uk;
- eDRIS in Scotland: https://www.isdscotland.org/Products-and-Services/eDRIS/;
- Health and Social Care NI Business Services Organisation in Northern Ireland: https://research.hscni.net/).
Your identifiers will be used to identify your COVID-19 relevant health records and to send de-identified copies of these to the UK LLC. This will not impact on the health care you receive or change your record. The NHS will not have access to any of your study data. Researchers will not be able to access these files of identifiers. Children of the 90s continues to approve all research users who can access the study data and the UK LLC fully respects the commitments we have made over how your data are used (https://www.bristol.ac.uk/alspac/participants/our-commitment-to-you/).
If you have asked Children of the 90s not to use your health or administrative records in its research then this will be fully respected, and the UK LLC will not link to your records.
Please let us know if you have any questions or if you object to your records being used in the UK LLC. You can call us on 0117 3310033, email firstname.lastname@example.org or write to: Data Linkage Team, Children of the 90s, Oakfield House, Oakfield Grove, Bristol BS8 2BN.
Who we share data with
Children of the 90s operates as a scientific resource for the legitimate research community. Researchers working at Universities, in government departments, at charities or other organisations across the world may apply to access research data. Each application is assessed by the ALSPAC Executive, who decide whether the researcher is legitimate, if the data requested is needed to conduct the research, and if the research project can be conducted in line with the commitments we have made to you. We only share data in a way that seeks to protect your confidentiality.
Linking to other cohort studies
Children of the 90s use your personal identifiers (including NHS ID number and date of birth) to check to see if you are also taking part in other UK research studies (e.g. UK Biobank). We do this to explore the scientific advantages of combining data from multiple studies (e.g. checking to see if different collection methods change answers) and to make sure we can filter records when scientists run research projects using data from many cohort studies (if you are in both Children of the 90s and UK Biobank then this would introduce statistical problems unless we can exclude your records from one dataset). We make these checks using privacy preserving methods where your identifiers are encrypted before they are shared. Researchers using Children of the 90s data with other study data do not see your identifiers when using the data.
About this privacy notice
This is version 2.6 of the privacy notice, originally published 13/04/2015 as version 1.0 and most recently amended on 29/06/2021.