Research privacy policy

OnePlusOne Marriage and Partnership Research (“OnePlusOne”, “we”, “us”) is a charity registered in England and Wales, number 1087994, with its registered office at c/o MHA MacIntyre Hudson, 6th Floor, 2 London Wall Place, London EC2Y 5AU. We research relationships and use what we learn to build support for couples, parents and the practitioners who work with them. We are the controller for the information described here.

This notice explains, in general terms, what we do with information about people who take part in our research. Every study is different, so each one also has its own participant information sheet. That sheet tells you what that particular study involves, who is funding it, who else is involved and how long the information will be kept. If the two ever disagree, the participant information sheet for your study is the one that applies.

We have a Data Protection Officer who oversees how we look after personal information. Their details are in Section 11.

This is the part people find most confusing, so it is worth setting out plainly.

Before you take part in a study we ask for your informed consent. That is a research ethics requirement. It is about your right to decide whether to take part, to know what you are agreeing to and to stop at any time. It matters, and we take it seriously.

Data protection law asks a separate question: what lawful basis allows us to process your information? For most of our research we rely on legitimate interests. Where a study relies on a task in the public interest, that task must have a clear basis in law. Your study information sheet explains the basis that applies. Ethical consent to participate is separate from this data protection basis.

So: you consent to take part, and you can withdraw from the study at any time. Whether we can also remove data already collected and analysed depends on where the study has got to, and Section 8 explains what that means in practice. Your study's information sheet will tell you the cut-off point for that study.

Depending on the study, we may collect:

• your name and contact details, such as email address, phone number and address
• the first part of your postcode, so we can describe where participants live without identifying anyone
• your age, gender, ethnicity, relationship status and who lives in your household
• information about your health or wellbeing, where it is relevant to what the study is about
• your answers to surveys and questionnaires
• recordings and transcripts of interviews or focus groups, where you have agreed to be recorded
• your consent form
• any feedback you give us about taking part

Some of this is more sensitive than the rest. Information about your health, your ethnicity, your religion or belief and your sexual orientation is special category data and needs extra protection. We collect it only where the research genuinely needs it, and your study's information sheet will say why.

Almost always from you. Some studies also use information from a partner organisation that has invited you to take part, from a practitioner or service that referred you with your agreement, or from a survey panel you have joined. Some studies work only with existing datasets that have already been anonymised, in which case no information about you as an individual reaches us at all. Your study's information sheet will say which applies.

For the research itself we rely on the lawful basis explained in your study information sheet: legitimate interests, or a task in the public interest with a clear basis in law. For special category data we also need an Article 9 condition. Where applicable, we rely on Article 9(2)(j), scientific research, together with the Data Protection Act 2018 research condition and safeguards. Processing must be in the public interest and must not be used to make decisions about you as an individual.

Those safeguards are the important part, so here is what they mean for you:

• we do not use research data to make any decision about you personally
• we separate the information that identifies you from your research answers as early as we can, and keep the link in a separate, restricted place
• we work with the least identifiable version of the data that will answer the research question
• only the researchers who need to see identifiable information can see it

Where we ask for your explicit consent for a specific use, for example to quote you by name or to use a recording in training material, we will ask separately and you can say no or change your mind.

We use it to carry out the study, to analyse and write up the findings, to publish and share what we learn, to develop and improve the support we offer, to report to funders on what the research achieved, and to keep records that show the research was done properly.

When we publish, we publish findings and not people. We do not include your name or anything else that would let a reader work out who you are. Where we quote someone, we remove identifying detail and, where the quote is distinctive enough that removing detail is not enough, we ask separately before using it.

Wherever the research allows, we anonymise the data. That means removing the identifying information and taking steps so that nobody could realistically work out who the answers came from, whether from the data alone or by combining it with something else. We assess that risk rather than assuming it, and we record how we did so.

Once data is genuinely anonymous it is no longer personal data, this notice no longer applies to it, and the rights in Section 8 no longer attach to it, because there is nothing left to connect to you. That is also why anonymised research data can be kept indefinitely and shared for further research.

Pseudonymised data is different, and the distinction matters. If we have replaced your name with a code but still hold the key that links the two, the data is still about you, it is still personal data, and everything in this notice still applies.

You can stop taking part at any time, without giving a reason and without any consequence for you or for any service you receive from us.

You also have rights over the information we hold: to ask for a copy of it, to ask us to correct it, to ask us to delete it, to ask us to limit how we use it and to object to how we use it. To use any of them, contact us using the details in Section 11.

Some rights may be limited by specific research exemptions, but those exemptions are not automatic. We consider the request, the applicable legal conditions and safeguards, and whether fulfilling it would prevent or seriously impair the research. Completing an analysis or publishing findings does not, by itself, remove your rights.

• once the data is anonymised, we can no longer find your records, so there is nothing to give you, correct or delete
• where a specific research exemption applies and all its legal conditions and safeguards are met, we may be unable to fulfil part or all of a request

We assess requests individually and explain any applicable limits. If we cannot fulfil a request, we will explain why and tell you how to complain to us, complain to the Information Commissioner’s Office or seek a remedy through the courts. A study withdrawal cut-off does not remove rights over identifiable personal information we still hold.

We will respond within one month. That month starts once we have your request and anything we need to confirm your identity. If your request is complex we can take up to two months longer and will tell you within the first month. When you ask for a copy of your information we carry out a reasonable and proportionate search, which means a genuine and thorough effort rather than searching every system regardless of the effort involved.

We share research information only where we need to, and we share the least identifiable version that will do the job:

• research partners and academic collaborators, where a study is run jointly. Your study's information sheet will name them
• funders, who receive findings and reports. They do not receive identifiable data unless your information sheet says otherwise and you have agreed
• transcription services, where an interview needs transcribing, under a written agreement that requires confidentiality and secure deletion
• suppliers who run our survey, storage and analysis systems, who act only on our instructions under a written agreement
• a data archive, where a funder requires the dataset to be deposited for reuse. Where that applies, the deposited dataset is anonymised unless your information sheet says otherwise

There is one exception to confidentiality, and we tell every participant about it up front. If you tell us something that suggests someone is at risk of serious harm, we may have to pass that on to keep them safe, and we would tell you we were doing so wherever it is safe to do that. This is set out in each study's information sheet.

How long depends on the study, and the period is set by the research protocol and its ethics approval, and sometimes by a funder. As a guide, information that identifies you is typically kept for three to five years after the study ends, consent forms for around five years so we can show the research was done properly, and anonymised datasets for longer or indefinitely because they are no longer personal data. Your study's information sheet gives the periods for that study, and our Data Retention and Destruction Policy sets out the reasoning.

Some of the systems we use are provided by organisations based outside the United Kingdom, or store information outside it. Where your information is transferred outside the UK we make sure it is protected to a standard similar to the protection it has here, either because the UK Government has decided the country concerned provides suitable protection, or by putting an approved contract in place such as the UK International Data Transfer Agreement. You can ask us for details of a particular transfer.

• Email: privacy@oneplusone.org.uk for anything about your personal information, or info@oneplusone.org.uk for general enquiries
• Post: Data Protection Officer, OnePlusOne, c/o MHA MacIntyre Hudson, 6th Floor, 2 London Wall Place, London EC2Y 5AU

If you are unhappy with how we have handled your information, please tell us first so we can put it right. You can complain directly to OnePlusOne, and we will acknowledge it within 30 days of receiving it, look into it, keep you posted and tell you the outcome as soon as we can. Complaining will not affect any service you receive from us.

You can also complain to the Information Commissioner's Office at any time. You do not have to come to us first, although the ICO will normally ask you to give us the chance to respond.

• Website: https://ico.org.uk/make-a-complaint/
• Phone: 0303 123 1113
• Post: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF

If your concern is about how a study was conducted rather than about your information, you can also raise it with the research team or the ethics committee named in your study's information sheet.

• The participant information sheet for your study, which takes precedence over this notice
• OnePlusOne Privacy Notice (Non-Employee) V3
• GDPR Data Protection Policy V4
• Data Retention and Destruction Policy V6