Biography

Arianna investigates how a dynamic form of consent could provide a better option for engaging with research participants. Dynamic consent exists over time, rather than offering a one-time choice. She works with colleagues in Law, collaborating with the clinical research team behind an online platform for research into rare conditions.

Abstract

The problem I am investigating lies in the conversations we are having about data. In research, the burden of communication falls on researchers to communicate clearly and concisely. Not on participants to understand dense academic terms. My work indicates that communicating with participants in an accessible way leads to richer data-collection in a longitudinal study; response rates are higher overall, and we have seen participant retention where we would expect to see drop-off.

The Rare and Undiagnosed Diseases Study (Rudy), launched in 2014, is a research registry on rare genetic conditions. There are over 2,800 people who are asked to fill out questionnaires every six months. Rudy implements dynamic consent: people can edit consent choices and engagement is a priority. I interviewed participants and researchers to find that participants were not engaged, despite the research team prioritising engagement. I found anecdotal evidence that engagement had improved research process (participants wanted consent options for post-mortem data-use) and procedure (researchers had not considered the mental health effects of rare conditions).

I ran focus groups to understand what participants wanted to know about the study, working with researchers to change the project website, reminder email and online portal. I ran a study measuring the effect of this "enhanced feedback" on questionnaire completion rates. I am building an empirical case to demonstrate that participant engagement provides research value.

Informed consent was developed to protect people and as we move into digital spaces it is becoming less informed and more of a tick-box exercise. Dynamic consent has been proposed as one way to address this, with two criteria: engagement must be built in from the start of a project, and participants must be able to edit and remove their consent to data-sharing. In other words, consent is not just a one-off decision. I have been looking at Rudy’s implementation of dynamic consent as an example of excellence, and to learn where pitfalls lie when presenting choice and thinking about data-use over time.

Publications

1. Schuler Scott, Arianna & Goldsmith, Michael & Teare, Harriet & Webb, Helena & Creese, Sadie. (2019). Why We Trust Dynamic Consent to Deliver on Privacy. 10.1007/978-3-030-33716-2_3.
2. Schuler Scott, Arianna & Goldsmith, Michael & Teare, Harriet. (2019). Wider Research Applications of Dynamic Consent. 10.1007/978-3-030-16744-8_8.