Best practices for PII and PHI when joining a longitudinal study from an anonymous survey link | XM Community
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Best practices for PII and PHI when joining a longitudinal study from an anonymous survey link

  • 30 July 2020
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I have a study with an unusual combination of requirements I haven't needed to satisfy before, and am trying to determine the best way to approach it.
My associates would like to post an anonymous link in an email blast to give the recipients the opportunity to sign up for a monthly survey panel. The link has to be anonymous because it is being sent out by another organization, and also needs to be available to potential respondents who don't receive the email blast.
In the survey they want to:

  1. Include an informed consent question (in order to opt-in/enroll in the study)

  2. Collect PII name and email address (to use in distributing the subsequent waves of the study)

  3. Collect personal health information (PHI)

  4. Assign a random, unique identifier to link responses between monthly waves of the survey.

The catch is that we cannot collect PII and PHI together in any dataset, so I'm looking at conducting two different surveys at the start: one for enrolling in the panel and entering PII, and the other for answer the survey questions with PHI.
My suggestion for the fist wave is to use Actions to email the PHI survey to respondents automatically after the complete the enrollment form, and also build the Contact list for use in subsequent waves. My associates prefer to have the enrollment and first PHI survey essentially completed in a single online session, by inserting a link to the PHI survey within the enrollment form, but I am unsure whether there is a way to assign a random, unique ID to respondents that way. (Maybe there's a way to do this with Authenticators and Random Numbers, but I'm concerned about the same number being assigned to more than one respondent.)
Has anyone had to set up a survey with similar requirements before? If so, what is the best approach? Thanks for any suggestions you can share.

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Best answer by bstrahin 31 July 2020, 14:47

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MatthewM you can build 2 surveys that pass on the ResponseID through query string. You don't need to use actions to send an email, you can build in the link as an End of Survey element to automatically redirect.
Survey 1:

  • Consent form

  • PII

Survey 2: PHI
In survey flow, add an End of Survey Element. Customize it to override Survey Options and select Redirect to a URL. Copy and Paste the anonymous link for survey 2 here and then add on "?ID=${e://Field/ResponseID}" after the anonymous link without spaces. This will make your first survey flow straight in to Survey 2, but it will carry forward the person's response ID as "ID" so you can connect the two instruments by record. It should be a better flow for respondents than using an email action to ask them to complete the second survey.
You can either add a contact list trigger to build your list for future emailing needs. Or when subsequent surveys are ready, you can download information from Survey 1 and pull out name, email, and response ID (rename to ID) to carry this unique ID through to additional surveys beyond these two.

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Wow, thank you bstrahin! So basically I use the ResponseID assigned by Qualtrics in survey 1 as the Respondent ID number in surveys 2 and beyond? I thought there had to be some way to carry that from survey 1 to 2; I've just never used query strings. I'm excited to try out a feature I haven't used before!
In survey 2, will I need to add an Embedded data field (named "ID" in your example) to store this variable, or will Qualtrics automatically save it?

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MatthewM, yes, sorry I forgot to mention that. Add an embedded data field at the beginning of survey 2 to get the survey to save the ID you carried forward from survey 1. Please reach out if you have more questions. Good luck!

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Thank you so much for helping me clear this hurdle!

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MatthewM bstrahin Very interesting discussion here; just to make sure, you are still collecting PII in the first survey or simply using the ResponseID as embedded data to link the two instruments? I'm intrigued by this, although don't have a use case for it in my organization as we are not authorized to collect PII and have no aspiration to do so.

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AdamK12 The cool thing is that using Query Strings to pass along the Response ID from a first survey to subsequent survey gives you all kinds of freedom in the design of your study. With the caveat of this doesn't pass along the answers from prior surveys, but gives you a common ID to glue the information together later (not a problem if you plan to use Excel or SPSS, etc. for analysis - problematic if you want to do the entire analysis within Qualtrics). If doing the entire analysis in Qualtrics where you need one project to hold all of the answers from multiple surveys then you are better off looking into using Contact List Triggers to carry forward respondents answers to questions.

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Just set up two dummy surveys this morning and was able to get the ResponseID to carry through from one to the other. Thanks again bstrahin ! The one drawback is that there is a brief "Please wait while you are redirected message" when clicking the Next button on survey 1, but I imagine there is no way around that.
AdamK12 Yes, I am collecting PII in the first survey, for the purpose of contacting the same respondents on a monthly basis going forwarded. ResponseID will be used to link the responses in the second survey with those collected in future waves of the study; they will NOT be used to link responses from survey 2 with PII in survey 1.

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MatthewM yes, no way that I know around that screen. But I think it's good practice to let the people know the next screen will say they are redirecting and this is for added security of their information - their PII and PHI are not saved in the same place.

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In case anyone is looking for a step-by-step, I wrote up some documentation for that exact use case!
https://ithelp.brown.edu/kb/articles/use-qualtrics-for-human-subject-research-using-a-screener-survey

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