The February NIH www.nih.gov workshop www.nih.gov/precisionmedicine/workshop was held to explore opportunities and identify the challenges associated with building a large research cohort as part of the Precision Medicine Initiative (PMI) www.nih.gov/precisionmedicine.
Recurring points were made at the workshop involving upgrading data collections, how to ensure that the cohort will be useful for a wide array of research, how to effectively evaluate mHealth technologies, and to make certain that the research studies include EHRs and Blue Button Technology.
The workgroup on “Data Collection and Mobile Technologies” was chaired by Roderic Pettigrew, MD, PhD, Director of the National Institute of Biomedical Imaging and Bioengineering www.nibib.nih.gov and Kevin Patrick, MD from the University of California, San Diego http://ucsd.edu.
As discussed in the data workgroup, the research cohort will face many implementation challenges. These include establishing data standards, guarding participant privacy, dealing with data quality, keeping up with the rapid proliferation of new technologies, and providing access to the data.
Key questions were discussed at the workgroup:
- How to achieve active participation from the broadest possible group of participants
- How smart phone usage could skew the composition of the cohort towards young, educated, employed, and healthy participants
- How to develop standards for the validity of data collected with mobile technologies
- How to deal with a combination of observational science and big data
The workgroup on the “Opportunities and Challenges Related to EHRs Data for Research” was chaired by Daniel Masys, M.D University of Washington www.washington.edu, and Rex Chisholm, PhD, Northwestern University www.northwestern.edu.
The workgroup proposed that the PMI research cohort develop motivation for participation, improve the integration of health information and research data, engage industry, enable participants to have control over their data, and include cybersecurity provisions.
Key discussion points:
- Researchers will need to examine multiple types of EHR data, including laboratory results, prescription, written notes, and information provided by participants
- The use of social media with EHRs
- Upgrading Blue Button technology to make it fully usable for many patients
In addition, one major problems with EHRs is that EHRs are becoming increasingly dense. To help remedy the situation, it was suggested that phenotyping algorithms for different diseases be developed using conventional EHR data.
Participants at the workshop discussed the growing use of apps as mobile patient monitoring is growing rapidly. In the future randomized clinical trials may not be the gold standard. Experts think that a combination of observational science and big data including inferred data such as measurements of movement will likely be used in the future.