Informed consent: vetting research software for privacy

Woman with her hair in a bun facing away toward a computer monitor.

This article appeared in ResearchOps Community’s Medium publication on May 8 and was listed in Great Question’s May 11 post of must read articles

We’d like to be sure that the data about our research participants stays between us and the test participant, but are our participants fully aware of the data sharing agreements underlying their use of the testing tools? The confidentiality agreement they have with us is only part of the picture.

In this article, I’ll discuss how to ensure that your participants know how their data is collected and how it might be used or shared beyond the scope of the covered research product. I’ll focus on a mini audit of several user testing software packages that we performed based on the 10 attributes for respectful Me2B commitments that underlie the Internet Safety Lab’s ISL Safe Software Specification:

  1. Clear data processing notice
  2. Viable permission
  3. Identification minimization
  4. Data collection minimization
  5. Private by default
  6. Reasonable data use & sharing / Me2B deal in action
  7. Data processing behavior complies with data subject’s permissions and preferences
  8. Data processing behavior complies with policies
  9. Reasonableness of commitment duration
  10. Commitment termination or change behavior

Source: “The 10 Attributes of Respectful Me2B Commitments,” Internet Safety Labs

First, some definitions:

  • “Me2B” is a flipping of the traditional shortcut, B2C or Business to Consumer, relationship and is designed to put the individual first.
  • “Me2T” is your relationship with the technology itself.

To understand the background let’s take a brief look at the data privacy legal landscape in the US. I’m not a lawyer, so this is really just a broad brush overview. Any legal questions should be discussed with your corporate counsel.

Data Governance

Participant data may be collected in a number of ways, such as entering numbers or text directly into forms, entering it into an account profile (if you have one) or via an aggregated profile obtained from third party data brokers. Behavioural data also may be collected from third parties or your own app use.

Those of us who collect, use and share data from our research participants are becoming subject to a greater and greater number of data protection laws. Each law has varying degrees of requirements, usually based on where the data subject lives, so you want to be sure to get your data governance policies right. And it’s fair to expect the same from usability software that collects and controls data from you and your participants.

Data Handling in Practice

Researchers collect and store data with a number of different tools that in turn use underlying technology that may also access this data. Knowing what entities might have access to data through the testing platform’s relationship with these underlying tools can help you to evaluate whether you are exposing your team or your participants to risks that come with these technologies. We like to call this the “Me2T” relationship and it is largely hidden from the user.

Lack of notice and consent to share data present significant risks.

Notice of data sharing and consent are key components of many of the data privacy laws that govern which data we can and cannot save, use or share. While the risk to the researcher is similar to those of the user testing platform, the platform also bears responsibility for ensuring that anyone participating in a test on their platform has an appropriate level of notification that the data is being collected and shared, and subsequently allow the participant control over whether they continue using it.

Data Safety Audit

Researchers collect and store data with a number of different research tools, and that creates that Me2T relationship between the individual and the technology. We created a mini audit based on our safety specification. It is not a scientific study, i.e., we didn’t do a randomised sample and it only reflects the software packages that either we use in our own research or those that we’ve documented from forums that we participate in. However, the results brought up some interesting questions. (As a note, these are all companies that I have used and am comfortable using).

Table 1: Data sharing by vendor

Source: Internet Safety Labs. Note that Usability Hub is now Lyssna.

You’ll notice from this list that most of the software we looked at shares data with Google and other external vendors. One shared data with Facebook’s ad network and two shared with Amazon and Microsoft (including Microsoft Forms).

In Table 2, you can also see that just for these eight vendors, there are a few dozen companies or company assets that are receiving data. The ones in bold are advertising or tracking software, which often have agreements to sell the data they collect through data brokers. Many of these tools aren’t necessarily exploiting user data, but they are doorways to entities that now have some access to your participants’ data and your participants should know about that.


Table 2: Third party data vendors discovered in this study

Source: Internet Safety Labs

Methodology

To do the analysis, we used a tool from Evidon called Trackermap that exposes tags that allow data sharing between entities. What you’re seeing below is a map of the underlying technologies that expose data from Google Forms and Microsoft Forms. Trackermap is a paid platform that is bundled with Evidon’s Tag Auditor product, but there are free tools, like Augustine Fou’s Page Xray, that maps server and data tracking requests.

Results

Trackermap scans for various requests by external sites. We were particularly interested in advertising (blue), analytics (red), and trackers (gold), as these are most likely to be integrated into a data broker network.

Fig. 1: Google Forms Trackermap. Source: Internet Safety Labs.
Key to color coded data, white text on black with colored boxes
Fig. 2: Microsoft Forms Trackermap. Source: Internet Safety Labs.

We started with Google Forms and Microsoft Forms because they are popular, free tools that don’t require a lot of expertise to set up. While we expected to see a lot of sharing within their own advertising networks, we only saw Microsoft sharing with Bing Ads. Google Forms did not share data with their advertising network.

Can the participants see this? Well, Google doesn’t require it, but researchers can add an additional description with information about the study and details for informed consent, if they choose to. Significantly, most of the form-based surveys that we reviewed didn’t actually do this.

A savvy user may see that Google has its own privacy policy at the bottom of the form. That’s one potential relationship, but the Google Forms survey we reviewed also indicated that there was another company involved, a panel recruiter called SurveySwap. This is another Me2T relationship. This means that there are a few third party technologies in play here (Google and the panel recruiter), but no reference to the consent practices for any of these underlying relationships other than Google’s privacy policy link. So maybe Google Forms doesn’t share much, but in this case, the participants in this survey are potentially exposed to data sharing by the panel company (see the Tracker Map results formSurveySwap below).

Key to color coded data, white text on black with colored boxes
Fig. 3: Surveyswap Trackermap. Source: Internet Safety Labs.

We ran a few other tests. The table below shows the number of trackers, ad networks and analytics packages for several products commonly used in user research.

Table 3: Ad networks, data trackers and analytics packages by vendor

Source: Internet Safety Labs. Note that Usability Hub is now Lyssna.

Below are the tracker maps from live tests at the usability testing platforms that we examined, and you can see that these platforms share to both DoubleClick and Google Analytics:

Key to color coded data, white text on black with colored boxes
Fig. 4: Trackermap results for Usability Hub’s (now Lyssna) Usability Test and First Click Test and Optimal Workshop’s TreeJack tree test and Optimal Sort card sort. Source: Internet Safety Labs.

The survey vendors we examined tended to have a smaller number of tracking vendors:

Key to color coded data, white text on black with colored boxes
Fig. 5: Trackermap for TypeForm and SurveyMonkey forms. Source: Internet Safety Labs.

The third group that we looked at was panel recruiters, where we saw a lot of data sharing with entities like Facebook Ads, DoubleClick, Microsoft Marketing and Adobe Metrics:

Key to color coded data, white text on black with colored boxes
Fig. 6: Trackermap results from UserInterviws and Prolific.io. Source: Internet Safety Labs.

…you should be asking yourself whether your participants are aware of these relationships and whether … [vendors] have access to the data they provide to you.

It’s important to note that panel recruiters create a relationship with the participant at the time when the participants create an account with the recruiter, usually before they sign up for your study. It’s not a relationship you control, and it is not likely that your research data is shared with the recruiter unless you use their platform to run the survey.

When you look at these results, you should be asking yourself whether your participants are aware of these relationships and whether they are aware that these entities might have access to the data they provide to you. We feel it’s a good idea to remind participants of any Me2T consent relationships that they have already entered into when they participate in your study.

What else can you do?

Product development is flawed. Often there is no consent at all when testing with potential users. What are some of the other things that you can do to ensure that you are fulfilling your role as a data collector?

Researchers should be advocating for informed consent, highlighting all of the potential recipients of the participant’s data, and referencing in the informed consent document any additional data policies underlying the usability, platform, software or panel recruitment programs that are in use. And you should make all of this part of your vendor selection process.

Software testing platforms should take a closer look at their data protection responsibilities and make a greater effort to inform participants and test creators of the data sharing policy, not just once, but every time they use your software.

View Noreen’s lightning talk, “Informed Consent: Are Your Users Aware of What They Share?” at USENIX’s 2022 Symposium On Usable Privacy and Security (SOUPS 2022).

UX-LX: Preventing Digital Harm Keynote and Searcher Behavior Workshop

In May, I was invited to speak at UX Lisbon, on Preventing Digital Harm in Online Spaces. At the main event, I presented the Internet Safety Lab’s framework for preventing digital harm in connected products. This included a discussion of the relationship technologies have with consumers. I demonstrated techniques designers should adopt to mitigate the digital harms and dark patterns that could potentially violate that relationship. You can download my presentation below.

User Experience Lisbon 2023

On the first day of the event, I ran a half-day, pre-conference workshop titled “Designing Effective Search Strategies.” In this session, I introduced a new framework using observation as a powerful tool to understand site search behavior. To explore this, we broke into seven groups and worked on empathy maps, search personas and mapping the user journey. I also introduced including group personas (2 of the groups took as a hint to discover cocktail lounges in Lisbon). As a takeaway, all participants received a toolkit for crafting these artifacts and a step-by-step process to enhance product search. We got to eat yummy Portuguese snacks, too!

“Noreen … made the interesting point that if we build an accessible design we’ll also be solving many search problems.”

UXLx: UX Lisbon

What a wonderful event, interesting and welcoming people and an absolutely unforgettable time!

I am available to teach your team preventing or mitigating digital harm. Or lead a workshop on how to understand user search behavior. I can lead workshops solo or with my colleagues at Information Architecture Gateway. Let me know if we can help.

Read the UXLX Write-ups at Medium:

UXLX 2023 Wrap Up: Workshops

UXLX 2023 Wrap Up: Talks Day

Ethics in Computer Programming: Move Fast, and Let Someone Else Break Things

In a session yesterday of the NSF CyberAmbassadors leadership training program, my breakout group were tasked with discussing a case study of a potential ethics violation in research data privacy. The Code of Conduct that we were to use to determine if a violation occurred was the Association for Computing Machinery’s (ACM).

The case study involved a research scientist who had made software to analyze three sets of participant data, including DNA records, medical records and social media posts. There was a problem with the program and the scientist wanted to be able to do a crowdsourced code review. They asked their ERB team to review whether they could release the codebase to the public to crowdsource the problem. The ERB approved the request as long as no participant data was also released or could be reidentified. The case expressed a statement that there was a risk of reidentifying data but didn’t say specifically how. Just that the request was approved.

My first impression was that the research scientist was hiding behind item 2.6 in the ACM Code of Conduct, which says to only do work within your area of competence. The way we read it, the researcher relied on the Ethics Review Board (ERB) to make the ethical determination. Since the ERB approved the study, was the researcher in the clear?

Conversation ensued about how a data analytics program that didn’t include test data could be tested, or whether it could be tested with dummy data and a sample of open social media posts/hashtags, etc. but that was actually aside from our real interest, which was the idea that technology developers, including those with less funding, but also those with fewer guardrails, may not be competent to or interested in make ethical decisions.

Someone brought up AI. People working in AI today or really any large, complex model affecting global populations, are often making decisions way outside of their area of competence. They may do well, in one or two disciplines, but understanding and unraveling the externalities of what the thing will do once it’s in the world is of lesser interest since they aren’t ethicists.

In fact, not all companies have ERBs and many big names, you know who, have quietly and unceremoniously disbanded their ethics teams. In a world of move fast and break things, it’s not their area of competence.

Is this the world we want to live in?

UX-LX: Designing Search Experiences in Lisbon!

May 24, 2023 9:00AM-12:30PM WET
Sensemaking, Search and SEO at UX-LX: UX Lisbon

Designing Effective Search Experiences

How do people locate and discover information online? Well, they type keywords into a search engine and then select items from the search results, right? This is the current mental model of how search/retrieval works for most users. But it’s not the only way people search, nor is it necessarily the most effective for the information seeker.

In this workshop, you will learn about ”Sense-making,” a search behavior that information architects, user experience (UX) and usability pros should not ignore. You will learn how individuals (and groups) plan and carry out search activities. How a searcher’s goals affect their sense-making tasks. And how accessible design and information architectures improve search performance. At the end, you you will understand how to optimize the user experience of your products and search engine results pages, so people get the information they need with less frustration. 

Topics covered:

  • Approaches to sense-making & information seeking behavior
  • Searcher goals that affect sense-making tasks
  • How accessible design and information architecture improve search performance
  • Where & how to implement search-related sense-making in user personas/profiles & customer journeys
  • How to optimize individual search listings for findability & sense-making
  • Search strategies for apps, video, voice and ChatGPT

Exercises:

  • Individual and group search exercise
  • Analyze a selected web page for accessible design and search optimization
  • Incorporate search behavior characteristics into personas and JTBD
  • App, video and voice search optimization
  • Discussion of new and emerging forms of search experiences

Attendees will learn:

  • How to identify search behaviors and incorporate them in personas and JTBD tasks
  • How to architect & optimize different types of search experiences
  • How accessible design can improve search experiences for everyone
  • How search strategy differs for websites, apps, voice, video and emerging experiences


Any requirements for attending: None

Information Architecture Conference 2023

I am also hosting a full day workshop on Safe Tech Audit: Applying IA Heuristics for Digital Product Safety Testing in New Orleans on March 28 at IAC23: The Information Architecture Conference. Registration

Safe Tech Audit Sketchnotes – IAC22

Zsofi Lang’s Sketchnotes from my talk “Safe Tech Audit: IA as a Framework for Respectful Design” from The Information Architecture Conference 2022:

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