Biobanks are considering electronic tools for the obtaining of informed consent (Simon et al., 2014). These tools will not only need to be efficient, but also effective at promoting user understanding, satisfaction and trust. This research study will provide guidance on how to develop electronic consenting tools using a model process, and how effective interactive multimedia consent tools are compared to traditional face-to-face consenting methods.

Illustrative examples from our focus groups regarding EFFICIENCY of an interactive multimedia consent module for biobanking:

  • "It just feels faster....there's something about the convenience for some people."
  • "Well with this format I was able to listen to it as I multi-task so that's good to have it as audio."
  • "I didn't like the voice because I read fast. I probably could've turned down the volume. And when I was moving through, it was kind of loading slow, so I was moving at a faster pace than the actual content."

Illustrative examples from our focus groups regarding EFFECTIVENESS of an interactive multimedia consent module for biobanking at promoting user understanding and satisfaction:

OVERALL:

  • "I thought it was a good way to give people the information about the research, and I think you learn more that way when you see it in a slideshow, instead of reading it from a paper. It's more of a visual consumption of what you're trying to get across."
  • "What I liked was its interactive so I can go back, go next, volume up and down, and if I'm not sure about a question I can go back and read again, and go back to the question. Make sure I, you know, I read it right."
  • "...it's big so I can see it because I'm really not, I'm blind to a certain extent and deaf. So it's it's I like it."
     

NARRATOR: 

  • "I like to have a user voice reading along with you so you could stay focused."
     

BUTTONS:

  • "And another good thing about the slideshow, you could go back, if you felt like you didn’t get it all, you hit the button too quick, you can always go back and re-listen to it again. So, that’s good as well."
     

QUESTIONS:

  • "I think having the interactive questions is a great idea....If you don't have it right, then it lets you know and you're able to rethink, review, and figure out what it is that you need to actually learn from the question."
  • "I liked the prompts, how they worked to explain what the right answer was or take you back to the right answer."

Illustrative examples from our focus groups regarding BARRIERS to electronic consenting tools:

  • "Some people might not have a computer in their home" "Or internet service."
  • "You gotta remember not everybody's into computers." "Yeah, I think the presentation targets certain people who are more comfortable." "Yeah, like certain age groups."

Illustrative examples from our focus groups regarding PARTICIPANT PREFERENCES for consenting tools:

  • "I think I'd be more likely to participate when consent is given in the form of the slideshow than in the form of like a packet of paper. Because this is just easier to digest than like a stack of papers that were given to me. So I think something as easy to understand and as easy to follow as this would make me more likely to participate in this study because I would feel like all the information was being given to me. I didn't have to take the responsibility upon myself to sift through it. The work is being done for me I guess."
  • I think it would be good to go through it on the computer, but then have someone you can call and ask questions. Cause there may be something you're confused with, something you wanted explained better."
  • So this [e-consent] would be the next best thing, but one-on-one is the number one answer because people like looking at somebody. They like the person, the feel, the connection, the emotional connection...."
  • "...it just depends on the person."
  • "face-to-face. I'd rather have face-to-face."
  • “Just hashing things out like now [in a group discussion]. We’re talking in a group and each one of us have different ideas and we can just compile them and see the ones that would benefit us better.”
  • “I think you need, if not one way, more than one way [to present the consent]….” “Which way would be best for you to, cause everybody in this group has said something a little different.”