Jane Kaye – University of Oxford: Big Data in Biomedicine Conference

TL;DR

Dynamic consent is a project that aims to give individuals the ability to give and revoke consent for the use of their information in research, while also focusing on engaging patients and providing them with more information about the research process.

Transcript

you you Jean thanks so much for joining me can you tell me a little bit about the dynamic consent project dynamic consent was started in about two thousand eight and the aim of it is to enable individuals to give consent to the use of information but also to revoke consent so that was our starting point but once we had conducted focus groups with p... Read More

Key Insights

• 👨‍🔬 Patients are more interested in knowing how their samples and data are being used in research rather than just giving or revoking consent.
• 😒 Dynamic consent has been implemented successfully in biobanks and clinical research networks, and is now being explored for use in clinical trials.
• 😷 There is a need for better platforms for engaging patients and participants in medical research, other than the few existing options.
• 😷 Legal protections for handling data in medical research vary between countries but are designed to protect the interests of participants.
• 😒 There is a balance between individuals' right to know how their data is being used and the practicality of obtaining consent for every use.

Questions & Answers

Q: What is the main focus of the Dynamic Consent project?

The main focus of the Dynamic Consent project is to empower individuals by giving them the ability to give and revoke consent for the use of their information in research, while also involving them in the research process.

Q: What kind of information are patients consenting to use?

Patients are consenting to the use of their biomedical data, which includes samples and medical records, in various research projects.

Q: Is there any legal precedent for using dynamic consent in research?

Currently, there is a lack of legal precedent specifically addressing dynamic consent in medical research. However, there are groups working on engaging patients and there are platforms being developed to facilitate engagement.

Q: Does technology outpace our infrastructure when it comes to implementing dynamic consent?

Technology enables new ways of interacting with individuals and collecting their consent, but there hasn't been a well-established process to obtain consent for reusing data or linking it to other data. New technologies are helping to bridge this gap.

Summary & Key Takeaways

• The Dynamic Consent project started in 2008 with the goal of enabling individuals to give and revoke consent for the use of their information in research.

• Patients are less concerned about consent itself and more interested in knowing how their samples and data are being used in the research process.

• Dynamic consent has been implemented in biobanks, clinical research networks, and is now being explored for use in clinical trials.