Using health IT to enable research and inform practiceSkip to issue
§1. Big data analysis
Health care is an information- and communication-intensive industry that creates large collections of data (called “big data”) for many purposes. Analyzing big data can reveal hidden patterns that can (i) improve understandings of disease; (ii) assess how well treatments work; (iii) measure the quality of care and clinician performance within their care practices; (iv) analyze costs and the use of resources; and (iv) monitor the public’s health.
The increased use of health IT by providers and by patients will produce even larger amounts of data:
- EHRs will be one source of information to feed into the combined data repositories.
- Other sources include patient registries and insurance claims from private payers and public programs including Medicare and Medicaid.
- Patient-generated health data (from, e.g., mobile apps, wearable and implanted sensors, and other forms of telemedicine) can also be collected through an EHR or directly submitted to researchers, to a public or private health information exchange, or to another information system. (See Patient generated health data.) Patients could, for example, use e-tools to record drug side effects or observations from their treatment or clinical trial settings.
- How can health IT support the flow of information from patients to researchers through various channels, including health care providers, payers, and patients themselves?
- Would consumers expect to be compensated for donating data?
- How can the federal government best spur innovation and support the flow of information that makes big data analysis possible?
§2. Patient-centered outcomes research (PCOR)
Bringing together these data sources for analysis can enable low-cost, pragmatic clinical trials that are person-centered, incorporate real-world settings, and focus on highly targeted population groups. The aim of “patient-centered outcomes research” (PCOR) is to organize scientific evidence into a national network of databases and use the evidence to identify the best treatment options for specific populations. In this way, care can be individualized when the research is combined with a provider’s knowledge of a specific patient’s demographics, biological or genetic makeup, treatment history, and health goals – for example, avoiding treatments that may not work well, or improving the chances that a new drug could provide better outcomes for one patient with diabetes but not another.
This information allows providers to benchmark their work to best practices and improve patient care. In this way, the practice of health care can become more evidence-based, leading to faster, more accurate diagnoses and highly personalized care plans.
Health IT can also improve patient outcomes by enabling researchers to share the results of studies more broadly than before, through electronic alerts, new decision support tools and similar services. Providers then can apply these findings to their patients, identifying who will benefit most from new treatments or how to screen for certain health issues.
- How can the federal government make the dissemination of research and study results more efficient and effective at improving patient health outcomes?
- What policies and guidance will maximize consumers’ and providers’ ability to translate PCOR results into clinical and personal practice patterns?
- What policies and guidance will encourage providers to use PCOR results, combined with individuals’ personal and medical histories and preferences, to establish highly personalized care plans?
- How can developers create apps and eHealth tools that combine personal health information with scientific evidence on how well treatments and services work, as well as with potential insurance coverage issues?
§3. Privacy & security
ONC recognizes that privacy and security concerns may impact the willingness of consumers and providers to use health IT to increase access to health information. Privacy and security are the topic of a separate section of the Strategic Plan (Goal 3), since these concerns cut across all areas of health IT. Although this public comment period is not targeted at updating Goal 3, ONC will be revising that section of the Plan and your discussion of these concerns, and ideas about addressing them, will help the federal government decide on appropriate future steps.
(You can read the current version of Goal 3 by clicking the Background Documents tab at the top of this page, and selecting 2011-2015 Federal Health IT Strategic Plan).