On April 26, we had the opportunity to attend Bloomberg Government’s conference on Building the Big Data Economy: Personalized care and cancer treatment in the age of big data. The conference centered around two main topics: the Precision Medicine Initiative (PMI) and the Cancer Moonshot Initiative (CMI).
The event kicked off with a conversation about precision medicine with Dr. Francis S. Collins, Director of the National Institutes of Health (NIH). According to the NIH, “precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.”
President Obama launched the PMI in January 2015, through which $130 million was allocated to the NIH to create a large-scale, national research participant group. Dr. Collins explained that this study (known as the PMI Cohort Program) will encompass all diseases and aim to collect the data necessary to move forward with precision medicine.
Enrollment will be open to everyone in the United States and data collection will include health records, blood samples, lifestyle, occupation, geographic location, environmental exposures, genetics, and more. Dr. Collins explained that the study is a two-way street. Participants who submit data will be involved in the process and receive information in return. Enrollment is set to open later this year.
Participant privacy is a priority in the PMI Cohort Program and the highest security measures will be used to allow for responsible data sharing. The study aims to provide qualified researchers with a broad, large-scale set of de-identifiable data that will provide new insight into diseases and open doors for new treatment options and more effective ways to prolong health.
In addition to Dr. Collins, some key speakers at the conference included Dr. David Shulkin, Under Secretary of Health, Department of Veterans Affairs; DJ Patil, Deputy Chief Technology Officer for Data Policy and Chief Data Scientist in the Office of Science and Technology Policy; Dr. Dawn Milliner, Chief Medical Information Officer, Mayo Clinic; Rep. Gene Green (D-TX); Senator Sheldon Whitehouse (D-RI); Kevin Fitzpatrick, CEO, Cancer LinQ, American Society of Clinical Oncology; Dr. Judith Salerno, President & CEO, Susan G Komen; and Greg Simon, Executive Director, Cancer Moonshot Task Force.
As the conversation continued, the issue of privacy and data sharing was further discussed. When talking about a nationwide study aimed at gathering large amounts of personal data, some questions arise: What health care data should be shared and with whom? How can it be ensured that the participant is empowered to give their data to researchers? What incentive will be necessary to get people to share valuable data?
It was pointed out that people must understand the need for this data in order to advance the science and benefit all Americans facing disease. Panelists also acknowledged the fact that people will not want to share their data without a high level of trust and insurance against data breaches, and the PMI Cohort Program will provide that level of data security.
Once data is collected, in the case of both the PMI Cohort Program and in regards to the Cancer Moonshot Initiative, speakers noted that integration and collaboration will be extremely important. The data must be shared between hospitals, institutions, research centers, academic centers, and so forth, in order to advance research and move forward towards better treatment options.
As the conference continued, the topic of discussion became the CMI, what it is, and what it aims to achieve. The CMI was described by speakers as a government and private sector collaboration. Through this initiative, the nation’s research system will be brought into the 21st century. The way we do clinical trials will improve, more data will be available to researchers, and we will find better ways to use data to make an impact. The CMI is also about leveling the playing field in terms of access to care. It’s not just about designing the cures, but also about delivering them to ultimately make a difference.
In the discussions about both the PMI and CMI, speakers brought up the role of genetics and biomarkers in treatment development. A story was told of a newborn baby with long QT syndrome. Since long QT is a genetic disease with identified markers, they were able to take blood from the baby on a Friday and run her sequence over the weekend. By Monday, they knew what was causing the disease and were able to personalize the therapy to save her life.
It was discussed in agreement, however, that genetics alone is not the answer. Since confirmed biomarkers are few and far between, researchers need more data from all aspects of patients’ lives in order to advance. Integration of this data, including genetics, lifestyle, and so on, is key.
The overall atmosphere and dialogue at the conference was wholly positive and enthusiastic. All of the speakers expressed confidence in the advances that will come from both initiatives and the lives that will be saved as a result.
To learn more about the Precision Medicine Initiative, visit the White House website here. For more information about the Precision Medicine Initiative Cohort Program, visit the NIH website here.
For further information about the Cancer Moonshot Initiative, visit the National Cancer Institute’s website here.
