Left: President Obama at the announcement of the Precision Medicine Initiative
Right: Doug Fridsma and Francis Collins celebrate with a selfie
It has been a busy couple of weeks for informatics and health IT. On January 30 ONC released their interoperability roadmap, and President Obama announced details about the Precision Medicine Initiative that same day, just a few hours later. The day before, the House Energy & Commerce Committee released a discussion draft bill that would affect clinical research, the FDA, and potentially EHR functionality, and CMS set targets for payment reform over the next 5 years.
Wow. There’s a lot to talk about.
Over the coming few days (weeks?) I’m going to try and break the different initiatives down because they will have significant impact on our work. It will take some time to dig into the interoperability road map, and into the proposed legislation, but the Precision Medicine Initiative is moving full steam ahead. And informatics is leading the way, most immediately, this week, as part of an NIH workshop on building the cohort for research. But first, a little bit about precision medicine.
There’s been some debate in the AMIA online communities about what “precision medicine” means. While it is traditionally associated with tailoring therapies based on genomic information, I think it is much more than that. Precision medicine is about having all the information you need to precisely tailor interventions for an individual, so that you can achieve a better outcome. For some, this might mean understanding their activity record in their FitBit so that you can identify the best time for someone to take their insulin; it might mean analyzing their EHR information to see if the person is eligible for a clinical study; it might mean identifying that an individual lives in a food desert that makes dietary modifications difficult; and it might mean using an individual’s genomic information to predict if they will respond to a particular intervention.
What is different and exciting about the Precision Medicine Initiative is that it is all about the person — it’s about engaging people in improving health and healthcare and having them be a part of something bigger than themselves.
On February 11-12, the NIH is hosting a workshop on “Building a Large US Cohort for Precision Medicine Research”. Eric Green from National Human Genome Research Institute (NHGRI) and Gary Gibbons from National Heart, Lung, and Blood Institute (NHLBI) are leading the effort and have organized four planning teams:
- Building a consortium of cohorts (identification and recruitment)
- Participant engagement, data privacy, and novel ways of returning information to participants
- Data collection (including mobile health technology)
- Informatics and EHRs
AMIA has a number of representatives who are actively participating in this work, particularly around EHRs and informatics. Leading the effort on EHRs and informatics, is Daniel R. Masys, MD, FACMI, Affiliate Professor, Dept. of Biomedical Informatics and Medical Education, University of Washington. Also participation are Joshua Denny, MD, MS, FACMI Associate Professor of Biomedical Informatics, and Medicine, Department of Biomedical Informatics, Vanderbilt University, School of Medicine; and Lucila Ohno-Machado, MD, MHA, PhD, FACMI, editor of JAMIA; and Professor and Division Chief, Division of Biomedical Informatics, University of California, San Diego; and myself.
This event will be live-streamed and available on WebEx so there is an opportunity for everyone in the AMIA community to track and learn from the activity. Follow on twitter @NIH #PMINetwork
The agenda for the presentations is packed. Day 1 is Patient/Participant centered and Day 2 is Informatics/Data centered. More AMIA members will also be participating in the workshop.
– Building a Consortium of Cohorts — Cohort Identification and Participant Recruitment
– Participant Engagement, Data Privacy, and Novel Ways of Returning Information to Participants
– Data Collection and Mobile Technologies
– Opportunities and Challenges Related to the Use of Electronic Health Records Data for Research
Work groups experts are clustered as follows.
– Genomics/PGx/Other omics
– Epidemiology, population & clinical
– Policy, ethics, law
– Computer science (mobile platforms, UI)
– EHRs and informatics
– Measures of the personal environment
– Health services, implementation, & outcomes research
– Patient groups/patients
– Industry/Other private sector
– Consent platforms
For the President’s Precision Medicine Initiative to be successful, we must enlist all of the informatics community. How do we use mobile technology and personal engagement to encourage participation in this national cohort? Are the novel ways that we can collect and analyze this data? How do we link the data from patients to EHRs, to public and population health, and finally to clinical and translational research? Informatics will clearly play a role in supporting this key presidential initiative, and it provides the kind of engagement that years ago we could only have dreamed about.
I would encourage everyone to tune into the live feed, and to continue to track events here as I report on the results of those meetings.