PLOS Mental Health Lived Experience Focus Group 

Consent 

 

Thank you for your interest in applying to join the PLOS Mental Health Lived Experience Focus Group (“Focus Group”).   

 

PURPOSE 

The purpose of this Focus Group is to obtain input from persons who identify as having lived experience of a mental health condition who are not already affiliated with the PLOS Mental Health Journal (“Journal”) so that the perspectives can span both personal and professional and to ensure that the journal is responsive to community needs to sensitivities.  

 

WHAT IS INVOLVED? 

• If you are selected to join the Focus Group, members will typically serve for 12 months.  

• The Focus Group will meet 1-2 times a year via zoom and will provide feedback on Journal content and initiatives, which will be provided in a summary document prior to the meeting.     

• Participation in the Focus Group is completely voluntary and there is no monetary compensation for your participation. You can also withdraw from the Focus Group at any time by emailing the journal’s Executive Editor Dr. Karli Montague-Cardoso (kmontague-cardoso@plos.org).     

 

INFORMATION WE WILL COLLECT 

PLOS will collect the following information upon application:  

• Name 

• Title 

• Affiliation  

• Email address 

• IP address  

• Photo 

• Current employer 

• Lived mental health experience. 

• Reason you would like to be part of the Focus Group 

• Accessibly requirements  

• Your feedback on Journal content and initiatives. 

 

SENSITIVE DATA 

The identities of Focus Group members will be made publicly available on the Journal’s website. By being affiliated with the Focus Group, others will be aware that you identify as having lived experience of a mental health condition and that will be publicly available online. However, sharing specific details of your condition is entirely optional and those details will not be posted on the Journal’s website unless you consent to include such information in public communications. The purpose of collecting this data is to obtain feedback on Journal content from both a professional and personal perspective.    

 

USE AND DISCLOSURE OF YOUR INFORMATION 

We will use the information you provide to obtain feedback on Journal content from both a professional and personal perspective. As stated above, we will disclose your participation in the Focus Group publicly which means that others will know you have a lived mental health experience, but we will not disclose any other specific details you provide us unless you consent to such disclosure. Ultimately it is up to you whether you wish to disclose any other information to PLOS and the other Focus Group members. Other uses and disclosures of your information are set forth in PLOS’ Privacy Policy.  

 

SAFEGUARDS 

PLOS is headquartered in the United States, with an office in the United Kingdom and service providers both in the United States and throughout the world. As such, PLOS and our service providers may transfer your personal information to, or access it in, jurisdictions that may not provide equivalent levels of data protection as your home jurisdiction. PLOS will take measures to protect the cross-border transfer of your information in accordance with applicable law. 

  

PLOS uses reasonable and appropriate physical, technical, and administrative safeguards to protect your information from unauthorized use, access, loss, misuse, alteration, or destruction. We endeavor to protect the personal information we receive, gather and store, by such means as password protection, firewalls, access controls and other means. We also require that third party service providers acting on our behalf or with whom we share your information also provide appropriate security measures in accordance with industry standards. Although we make every effort to protect the personal data which you provide to us, the transmission of data over the internet is not completely secure.  

 

PERIOD FOR WHICH THE PERSONAL DATA WILL BE STORED  

The personal data you submit on the survey application will be retained for a period of 2 years after closing out the survey, unless you reach out and ask to have your data deleted sooner.  The identities of Focus Group members will be published on the Journal’s website and will remain on the website for an indefinite time period for archiving purposes in the public interest. 

 

YOUR RIGHTS 

Your rights as to deletion of personal information, access, update, and data portability are further detailed in our Privacy Policy.  

  

You also have the right to lodge a complaint before a supervisory data protection authority regarding our data processing.   If you are in Europe, an up-to-date list of data protection authorities is available at https://edpb.europa.eu/about-edpb/board/members_en. If you are in the UK, the data protection authority is the UK Information Commissioner’s Office available at https://ico.org.uk/. 

 

YOUR CONSENT 

• Your participation in this survey is voluntary and you are free to withdraw at any time. 

• You may withdraw your consent or withdraw from the Focus Group at any time by notifying Dr. Karli Montague-Cardoso (kmontague-cardoso@plos.org) or the PLOS Data Privacy Officer (privacy@plos.org).  

 

By ticking the consent checkbox in the survey, you indicate that you: 

1. consent to participate in this survey and 

2. consent to PLOS collecting and using the data as described above. 

 

If you want additional information or if you have any questions about this project you can contact Dr. Karli Montague-Cardoso (kmontague-cardoso@plos.org). 

 

Please keep a copy of this document for your records.