Saturday, August 20, 2016

Aiding Online Informed Consent using Social Commentary

I am excited that the topic of Consent is becoming so important that it is getting attention. Evidence this study that I think is really exciting, while embryonic. The study admits this, so they are not ignorant.  They are addressing the fact that on-line consent is a very disappointing experience, and try something to see if it can make that better.

What they have done is to ask if the systems we use on the social network can be used to help people understand the terms of a Consent. Like we use on Amazon to determine if we want to purchase an item.  Like on Facebook to encourage reading of an article. Like on YouTube to applaud good work, or not.

The idea is to allow those that are being asked to Consent, to ask questions, review others questions, review others observations, etc. Their results are encouraging.

However their results, by their own admission, are potentially contrived. We all know social systems that go horribly wrong. They get hijacked by people with an agenda; both positive and negative. They get filled with useless babble. They either provide too much anonymity or not enough identity to be trustworthy. Interesting that the method of gaining Consent might have Consent (Privacy) issues as well.
All of these things are - yet to be solved.

I like their overall premise, that moving from in-person based Consent, to a purely on-line web-form, will drive for less 'informed' consent, and possibly less participation. So they are trying to discover ways to make purely on-line experience better.

Their paper is long, but very nicely comprehensive.

Background: Social media, mobile and wearable technology, and connected devices have significantly expanded the opportunities for conducting biomedical research online. Electronic consent to collecting such data, however, poses new challenges when contrasted to traditional consent processes. It reduces the participant-researcher dialogue but provides an opportunity for the consent deliberation process to move from solitary to social settings. In this research, we propose that social annotations, embedded in the consent form, can help prospective participants deliberate on the research and the organization behind it in ways that traditional consent forms cannot. Furthermore, we examine the role of the comments’ valence on prospective participants’ beliefs and behavior.
Objective: This study focuses specifically on the influence of annotations’ valence on participants’ perceptions and behaviors surrounding online consent for biomedical research. We hope to shed light on how social annotation can be incorporated into digitally mediated consent forms responsibly and effectively.
Methods: In this controlled between-subjects experiment, participants were presented with an online consent form for a personal genomics study that contained social annotations embedded in its margins. Individuals were randomly assigned to view the consent form with positive-, negative-, or mixed-valence comments beside the text of the consent form. We compared participants’ perceptions of being informed and having understood the material, their trust in the organization seeking the consent, and their actual consent across conditions.
Results: We find that comment valence has a marginally significant main effect on participants’ perception of being informed (F2=2.40, P=.07); specifically, participants in the positive condition (mean 4.17, SD 0.94) felt less informed than those in the mixed condition (mean 4.50, SD 0.69,P=.09). Comment valence also had a marginal main effect on the extent to which participants reported trusting the organization (F2=2.566, P=.08). Participants in the negative condition (mean 3.59, SD 1.14) were marginally less trusting than participants exposed to the positive condition (mean 4.02, SD 0.90, P=.06). Finally, we found that consent rate did not differ across comment valence conditions; however, participants who spent less time studying the consent form were more likely to consent when they were exposed to positive-valence comments.
Conclusions: This work explores the effects of adding a computer-mediated social dimension, which inherently contains human emotions and opinions, to the consent deliberation process. We proposed that augmenting the consent deliberation process to incorporate multiple voices can enable individuals to capitalize on the knowledge of others, which brings to light questions, problems, and concerns they may not have considered on their own. We found that consent forms containing positive valence annotations are likely to lead participants to feel less informed and simultaneously more trusting of the organization seeking consent. In certain cases where participants spent little time considering the content of the consent form, participants exposed to positive valence annotations were even more likely to consent to the study. We suggest that these findings represent important considerations for the design of future electronic informed consent mechanisms.
J Med Internet Res 2016;18(7):e197

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