Standard Language for Surveys Reviewed by PHSA Legal

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Standard language for surveys reviewed by PHSA legal

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Template for Survey Wording

When using this template it is expected that you will use it verbatim unless you have contacted the Research Privacy Advisor. If justified, she will help you to adjust the wording to meet the needs of your participants.

This template applies only to survey studies wherein the survey is the onlydata collection tool.

It is intended to assist investigators to ensure that the introductory wording in their survey complies with Provincial Health Services Authority (PHSA) privacy requirements.
A separate consent form may not be needed if the study uses only a survey. In these cases, completion of the survey is taken as implied consent. Those who do not consent will simply exit the survey (for more information see Article 3.12 of TCPS2 (2014)).
The language below can be used for both research and non-research surveys such as those used in QI initiatives. However, all surveys used for research must be submitted to an REB for review and approval and must use REB approved language.
Please make sure you have the correct permissions in place to access patient contact information and recruit patients/future participants.
If you have questions about use of personal information in research, please contact your Research Privacy Advisor Holly Longstaff. If you have questions about personal information used in non-research activities please contact PHSA's Information Access & Privacy Office (IAP) for support .
Collection of personally identifiable information must be carefully justified.
Please ensure to remove survey responses from your selected survey tool after your results are compiled.

Please include the wording shown on pages2and 3 at the beginning of your survey.

Highlighted sections on pages 2 and 3 indicate placeholders for your study-specific information. Comments on pages 2 and 3 provide guidance on how to use the template, and should be removed from your final copy.

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Survey Consent for Collection, Storage and Use of Participant Information: Insert STUDY TITLE

You are invited to participate in this survey because [Insert purpose for data collection]. The results [will be collected anonymously/ all results will be de-identified/coded (data that can be used to identify you will be stored separately from your responses and your name will be replaced with a study code)/anonymized (information that can be used to identify you will be irrevocably stripped from the information[HL1]] and participation is voluntary. It will take [insert length of time to complete survey] of your time to complete the survey. The survey will be closed on [indicate how long survey will be open].

As [insert participant category, e.g. patients, clients, residents, employees, privileged physicians, external stakeholders, etc, as appropriate] of the Provincial Health Services Authority (PHSA), you are invited to participate in this survey to be administered by [insert name of Principal Investigator, including their position title and indicate that they are from PHSA and other key affiliations]

Your personal information is subject to protections under the BC Freedom of Information and Protection of Privacy Act (FIPPA). The collection of your individually identifiable information is authorized by section 26 (c ) (e ) of FIPPA[HL2].The identifiable information collected through the survey will only be used for the purposes listed on this form. To participate in this study as a survey respondent, you are being asked to provide the following information for use by PHSA:

Pers[HL3]onal views/opinions as expressed in the survey. These views and opinions are considered personal information[HL4].
Your personal email address
Personal health information
Gender
Ethnicity
Month and year of birth or age
Diagnosis
Other information that could be used to identify the individual such as remote geographic location, rare disease, etc.
IP address [HL5]

We do not intend to identify you. For open ended responses, we encourage you not to provide any information that might identify you or another individual. In reporting the results of the survey we will not include any individually identifiable responses[HL6].

Access to your information is limited to the survey administrator and the technical support team at [insert the name of the institution supporting the survey platform]. The survey administrator will maintain the survey, and analyze the results. You will not be identified in any reports, presentations, or publications that describe these results. You will not be provided with survey results[HL7].

As a participant in this survey, the information you choose to provide will be stored in the [name the storage location-for example, PHSA’s BC Children’s Hospital Research Institute’s Secured Network] electronically for [insert length of time you plan to maintain the data] years. Participation in the survey is voluntary. There will be no consequences to you if you choose not to participate. This survey is [completely anonymous or uses de-identified/coded/anonymized data] and individual responses will not be linked back to you. You do not have to answer any question that you do not want to.

Questions about your information and this survey may be directed to the Principal Investigator: [insert name of PI, their title, their business address, telephone number, and business email]. You may also contact the Principal Investigator if you wish to withdraw your consent. [HL8]

Consent

I have read and understand the consent for collection, storage and use of participant information. I voluntarily consent to PHSA collecting, using and disclosing the information I provide as a participant in this survey. Your consent is implied through completion of this survey.

I consent (proceed to survey) I do not consent (please exit from survey)

[HL1]Please choose the correct category for your data and include the corresponding definition for participants.

[HL2]

Please select the letter for the corresponding description below that best describes your study. You may also choose both options if applicable.

26 (c) the information relates directly to and is necessary for a program or activity of the public body

26 (e) the information is necessary for the purposes of planning or evaluating a program or activity of a public body

[HL3]The following are examples of data that could be considered identifiable information according to FIPPA. Please include any personally identifiable data that you plan to collect here and delete any that do not apply.

The collection of personally identifiable information must be justified, collected with consent from participants.

[HL4]Please do not store direct patient identifiers such as full name, home address, SIN, CareCard, patient number, etc. without strong justification and the informed consent of participants.

[HL5]If you are using BC Children's Hospital Research REDCap or Checkbox, please note that neither of these platforms collect IP addresses.

If the platform you plan to use does collect IP address, please turn this function off or disclose this collection to participants.

[HL6]If you do not plan to include any open –ended response/comment boxes in your survey please delete this paragraph.

[HL7]If you plan to post results anywhere that are publicly accessible please state that here. Suggested language is below.

“Survey results will be available on after analyses are complete”

[HL8]If your survey is anonymous then it will not be possible for participants to withdraw their consent to use their data so this statement should be deleted for anonymous surveys and replaced with the statement below.

“Because this survey collects responses anonymously and cannot link them back to you, it will not be possible to withdraw your consent after you participate.”