Data Collection

The HYPE study investigates biological, psychological and socioeconomic risk factors for long-term physical and mental health disorders together with associated health service use.

We are asking residents of the UK aged 16 years and older to help us by taking part in this project.

Questions asked will elicit sociodemographic information, socioeconomic status, work and school experiences, mental and physical health status, substance use, exposure to violence, well being and self harm, and neighbourhood characteristics.

Data collection for the interview will be completed using an online survey tool. Saliva samples may also be collected for analysis via kits delivered to participants.

Data Storage and Processing

Data will be downloaded to a secure, networked folder at King’s College London that will only be accessible to HYPE team members. Data for analysis will be disseminated in an anonymised format and any identifiable data (names, email addresses, telephone numbers) will be recorded separately, and stored in a different location on a secure King’s College server.

Saliva samples will be processed and held at the South London and Maudsley NHS Trust and King’s College London BioResource facility. A small portion of the biological sample will be stored at the National BioResource facility in Milton Keynes for research. Data will be shared with the National BioResource team using NHS computing systems with restricted and encrypted access. The same stringent rules about anonymity and who can share this information will apply.

Protection of Personal Data

Only the HYPE team will be able to access the personal details of study participants. All the study responses will be key-coded and stored separately from personal data. Participants will not be identifiable in any research outcomes (e.g. publications).

All information collected will be handled with care and in compliance with the Data Protection Act (1998), the General Data Protection Regulation (2018), and the university’s Research Data Management Policy.

The HYPE study’s legal basis for processing personal data under GDPR is Function of a public task (by a public organisation)

Data Sharing

Participants will be asked for consent to be re-contacted about participation in future research projects. If they agree, their personal data may be retrieved and they may be re-contacted by the team or other researchers at King’s College London. This decision will not affect their participation in the current survey.

Only in cases where a participant discloses something which may place them at severe risk (such as suicidal thoughts and ideas) will confidentiality be breached. In this case the participant will be signposted to relevant services by the study team, but may also be contacted by a HYPE-affiliated mental health expert and/or their GP may be contacted. The participant is made aware of this as part of the consenting process.

Findings from the study will be discussed in public meetings which we will inform our participants about via The HYPE Project website and a regular newsletter. Results will also disseminated through scientific publication, conference/workshop presentations and user/carer groups. The participants’ names will not be mentioned in any report or publication, and data published will be presented at the group level to minimise risks of tracing to any individual.

In future, a dataset created from responses to the survey will be anonymised and may be accessed by other researchers if they submit an application and are approved by the HYPE steering committee.

Participant Consent and Rights

Explicit consent for processing personal data is obtained from participants before they take part in the study.

If the participant no longer wants to take part in the study, they can withdraw any information that has been provided in the survey, given it is within one month after completing the study.

Participants have the right to ask for a copy of the information held about them and to have any inaccuracies corrected. Requests for withdrawal and information should be directed to the team at hype@kcl.ac.uk.

If there are concerns about personal data handling, these can be raised with the HYPE team at any time, or with the KCL Data Protection Officer (see below).

Contact Details

The HYPE study is being conducted by researchers from King’s College London and is funded by the National Institute for Health Research Biomedical Research Centre.

Address:  HYPE Study, Institute of Psychiatry, Psychology and Neuroscience, 16 De Crespigny Park, SE5 8AB, Camberwell.

E-Mail: hype@kcl.ac.uk

Website: https://hypekcl.com/

The King’s College London Data Protection Officer is Albert Chan.

The KCL Privacy Statement can be accessed here: https://www.kcl.ac.uk/terms/privacy.aspx