Steve Steinhubl, Director of Digital Media, Scripps RTI,discusses a digital & pragmatic clinical trial that explores under diagnosed Atrial Fibrillation in large health population.

In this episode of the NIH Collaboratory Grand Rounds podcast, Dr. Michelle Mello discusses a study she and Dr. Steven Goodman recently conducted to determine how clinical trial participants think about having their participant-level data widely shared. In her discussion with Dr. Lesley Curtis, Dr. Mello discusses study results, what she found most surprising, and how the study revealed takeaways for researchers and clinical trial sponsors.

Study results are published in “Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing” in the New England Journal of Medicine.

Podcast 13: Rethinking University Research with State Data (Aaron McKethan, PhD) by NIH Pragmatic Trials Collaboratory

Podcast 12: Exploring What is Possible with High-Quality Data. Examples from Flatiron Health by NIH Pragmatic Trials Collaboratory

Podcast 11: Launching NESTcc to Improve use of Real-World Evidence in Medical Device Ecosystem by NIH Pragmatic Trials Collaboratory

In this episode of the Collaboratory Grand Rounds podcast, Dr. George Hripcsak, Chair of the Bioinformatics Department at Columbia University, discusses the Observational Health Data Sciences and Informatics (OHDSI) Program with moderator Dr. Adrian Hernandez.  He describes the Program's vision to create accessible and reliable clinical evidence by gathering the clinical data of millions of patients globally. Dr. Hripcsak also talks about how listeners can "Join the Journey" and become part of the OHDSI research network, and help toward the generating high quality evidence needed to inform medical decision making.

Moderator Dr. Adrian Hernandez speaks with Duke Forge Director Dr. Robert Califf about the opportunities and challenges for data science in an era where data is everywhere. Now that mobile phones and other portable electronic devices provide people with access to large amounts of data day or night, Dr. Califf addresses how researchers and health systems can ensure that accurate health information is reaching these audiences.

Dr. Sean Tunis and Ellen Tambor discuss with moderator Dr. Kevin Weinfurt their findings on clinician attitudes towards research participation, and how and when to best engage them. They describe the need for involving clinicians in the planning of study design, and in closing feedback loops after studies are completed, in order to build clinicians’ trust that research does lead to quality improvement for their patients.

Dr. Andrew Faucett of Geisinger describes the considerations for the return of genomic results to patients.

Drs. Richard Platt and Christopher Granger speak with moderator Dr. Adrian Hernandez about the IMPACT-AFib atrial fibrillation trial and the role of the FDA’s Sentinel Inititative. In this trial, researchers used Sentinel pharmacy data to find eligible patients with at least one oral anticoagulation prescription fill, and the speakers describe how the platform provided them with an efficient and cost-effective way to access the data of over 80,000 potential participants.