Claudia Williams, White House - Stanford Medicine Big Data | Precision Health 2016

TL;DR

The speaker discusses the potential and challenges of using big data in healthcare to enable precision medicine and engage patients as partners in research.

Transcript

hey everybody I was telling my colleagues that i'm usually here for Stanford medicine X where there are balloons everywhere so this is a little bit of a different setup uh let me make sure i have my slides okay let me go back here all right ah so about a year and a half ago the president launched the precision medicine initiative and last year in a... Read More

Key Insights

• 😃 Overcoming the challenges of data silos, business rules, and human silos is crucial to unlocking the power of big data in healthcare.
• 🥺 Patients are at the forefront of innovation, and their insights from patient-led initiatives can accelerate progress in research and personalized medicine.
• 😃 Open innovation and collaboration between patients, researchers, and clinicians are essential for harnessing the potential of big data in healthcare.
• 🧑‍⚕️ Engaging patients and providing them with tools to access, understand, and share their health data can drive participation in research and improve health outcomes.
• 💪 Government initiatives, such as the Precision Medicine Initiative and the Cancer Moonshot, have strong bipartisan support and are likely to continue under future administrations.
• 👨‍🔬 The adoption of APIs by EHR vendors and the implementation of data sharing platforms can promote data access and enable patients to contribute their data for research.
• 😃 Precision medicine should consider the balance between using big data for personalized therapies and avoiding overdiagnosis and overtreatment.

Questions & Answers

Q: How did Matt Might use a blog post to find patients with a rare genetic disorder?

Matt Might created a viral blog post titled "Help Me Find My Son's Killer" with search terms related to his son's disorder, resulting in the identification of 40 patients and their families for research and therapy development.

Q: What is ResearchKit and how does it promote research participation?

ResearchKit is an open-source platform that allows anyone to create a research app using tools available on smartphones. It aims to make research participation easier by enabling individuals to participate from the comfort of their own phone, reducing enrollment challenges.

Q: How are national EHR vendors collaborating with NIH and ONC to enable data donation for research?

EHR vendors, including Epic, Allscripts, Cerner, and Athenahealth, have agreed to work with NIH and ONC to pilot the implementation of APIs that allow patients to donate their EHR data for research. This collaboration aims to make it easier for patients to participate in research studies and share their data.

Q: How does the Sign Apps platform address the challenges of the consenting process in research?

Sign Apps provides a user-friendly interface for researchers and participants to navigate the consenting process. It streamlines the ethical construct by ensuring researchers are skilled and legitimate, while also allowing participants to have a voice in the research process and data sharing.

Summary & Key Takeaways

• The speaker highlights the Precision Medicine Initiative (PMI) and the goal of enabling a new era of medicine through research, technology, and policies that empower patients, researchers, and providers.

• They emphasize the importance of unlocking the power of big data and creating new ways of working to enable personalized therapies and improved health outcomes.

• The speaker shares various innovations that showcase the potential of big data in healthcare, including finding cohorts for research studies, using mobile apps for research participation, and sharing electronic health record (EHR) data through APIs.