Creating a space for sharing by building autonomy and privacy into research

Illustration by Yvette Shanks. Learn more about our illustrators.

Creating a space for sharing by building autonomy and privacy into research

In our work, we think carefully about how we design the way collaborators interact with us and with each other. For some topics and some people, this can come easily, but for others, people are rightfully hesitant. We pay careful attention to the context of each research interaction so we can invite people in to (hopefully) share personal stories, experiences, and ideas that can help inspire and shape change. As researchers, hearing the specifics of people’s experiences — not just generalities — is what gives us the fodder to inspire non-linear thinking. 

So to help people feel comfortable enough to share honestly, we need to have practices that protect their privacy, foster their well-being, and meet their other needs for trust building. There’s lots of things that are important to creating this comfort, but there are two components that we see as absolutely critical. 

First: Give people autonomy to actively opt-in. 

The best information comes from people actively opting in to offering what matters to them. Autonomy should be built into every part of the interaction, with clear communication along the way. 

At first conversation (such as invitation or recruitment): Start with clear, personable communication. With a quick phone call or a first greeting, confirm that it’s a good time for them to talk. Make it clear what they can expect from you and what you hope from them, and lay out points in the process where they have choices (which probably should be many points!). 

During a research moment: Make the structure of opting in or out easy, whether you’re doing an interview or engaging people at an open house style workshop. Don’t make questions required, and let people know upfront that they can skip questions if they don’t want to answer them. Make it comfortable for people to choose what is of most interest to them, and provide options to return to things later if they want to. 

At the end of an interaction: Confirm the next steps verbally and in writing, and give people the option to follow-up if they have more thoughts or want to clarify. Respect the wishes of participants after-the-fact, whether that means adding additional context or changing wording to their response. 

At the end of a process: When possible, share how someone will be represented (especially to the public) and ask for their review and approval before their words, likeness, or name are shared out. Give them options (such as using a pseudonym or offering a different photo), and let them know where their words will be shared. If participant review isn’t possible, default to uses with more anonymity such as unattributed quotes.   

Second: Build in privacy and anonymity when possible, and be clear about expectations when not possible. 

Having the autonomy to affirmatively consent is important, and being able to offer some levels of privacy can be even more important. 

Before beginning a research endeavor: Designing the process of recruitment or the research method itself to be entirely private or anonymous can help people feel confident from the beginning. There’s many options on how to do this, but it can include having someone manage recruitment who is outside the research process, who then doesn’t reveal the personal details (such as real names) of participants to the research team. This can also include designing fully anonymous surveys (with tracking turned off), so people can contribute whatever they want. 

At first conversation (such as invitation or recruitment): Just like with creating a space for autonomy, clarity in advance about privacy is critical. Participants should know who will get access to what information, with specifics about who will see recordings versus notes versus a summary. When considering who from the team has access to different aspects, it’s important to consider what they really need. While some team members may want to see the full video of an interview, balancing that desire with participant privacy might mean they only have access to the summary. It’s also important not to over-promise privacy to the participants — by sharing their thoughts, they are choosing to share their information and confidentiality cannot be guaranteed, especially in any group settings.

During a research moment: Reinforcing the expectations about what will be shared and how during a research moment helps to connect the participant directly to if they want the things they might say shared in the formats expected. This gives them the chance to exercise their autonomy and make decisions that are right for them about how much detail to express and how.  It can also be a positive to ask participants what things they think are most important for others to hear, and amplifying what was most important to them. 

At the end of a process: It’s the responsibility of the project team to be purposeful and intentional about using direct information, such as quotes or stories, in final documentation. Making what’s shared non-identifiable (by removing specifics, unless desired by the participant) and using the preferred name or identifier of the participant can help maintain privacy. In other contexts, participants may want their experiences and perspectives attributed to them publicly, and honoring that is another way to respect their preferences around privacy.

Balancing the desire to hear stories, experiences and ideas from people with the desire to respect their own autonomy and privacy is what helps build trust and connection—and this is what can help create meaningful, transformational change that’s inspired by people’s lives.