Patient generated health dataSkip to issue
§ 1. Benefits and challenges
Health-related data that the individual patient creates or gathers is called “patient-generated health data,” or PGHD. People collect and share their PGHD through various consumer eHealth tools (such as mobile apps, Internet-connected monitoring equipment, personal health record systems, and patient portals connected to EHRs).
PGHD are different from traditional clinical data in two important ways. First, consumers, not providers, collect and record this information. Second, consumers choose how to share or distribute the information to health care providers and others. Sharing PGHD can give providers more complete information about the individual’s health. It can also help providers understand more about how effectively the individual manages his or her health. Providers can use this information to monitor patients remotely, reducing office visits and perhaps even emergency room visits.
However, providers may need to build in processes and time to evaluate this information and determine whether to incorporate it in the patient’s record–as well as to determine when to promote PGHD use (such as encouraging a patient to use a food choice or cholesterol tracking app as part of the care plan). Usability, innovations in technology, education, health literacy, economic disparities, and similar factors can be barriers to gathering and using PGHD.
- What policies, tools, resources or educational materials would be most useful to help consumers adopt and effectively use eHealth tools that generate PGHD?
- What policies, tools or resources can best help providers integrate PGHD into care plans and work flow processes?
- What type of data would be most useful for patients to generate for providers to help create a more individualized care plan?
- How can the government leverage current partnerships, such as working with participants in the Blue Button Pledge Program and with other public-private consumer and provider collaborations, to identify opportunities and barriers to PGHD?
For other discussions about developing educational and training materials, see:
§ 2. Researching how PGHD can benefit health
Consumers can use a wide variety of tools to capture health information, but it can be challenging to identify the ways in which PGHD might improve outcomes and the user experience. For example, an individual with well-managed diabetes might not improve overall health through a mobile app to track and submit glucose readings to his/her provider, but he/she might benefit from the increased communication with the care team that the app allows.
Additionally, providers likely will need guidance to change their practice patterns to incorporate the data, and to identify how office staff and resources can help patients (who may be new technology users) to use PGHD effectively. Research and “best practices” identification should help providers and the care team shape their role in evaluating and “prescribing” the most effective PGHD to improve consumers’ ability to self-manage their care.
Researchers can help identify:
- what PGHD is most useful to improve health and care processes;
- what types of consumer and provider education and support can ease the generation and use of PGHD; and
- how best to integrate consumer eHealth tools, and the information they generate, into people’s daily lives as well as into provider work flow.
- How can ONC gather use cases or survey best practices to identify how consumers and providers use PGHD?
- Are new or proposed research activities occurring on PGHD that the government should be aware of?
§ 3. Role of government
PGHD covers many kinds of data, including consumer-generated lists of issues to cover at a clinical appointment. Federal and state policies will need to answer important questions about what should (and should not) be documented in medical records, and who controls the data. Other issues to consider include the operational support and management of PGHD received at the point of care.
In addition, integration of PGHD into an EHR poses many challenges. ONC and many researchers are currently working to come up with solutions around “data provenance” (that is, the ability to trace where information originally comes from, how it has been changed, etc.) The goal is the technical capability to add labels (“meta-tagging”) to data elements that show their origin, even when they are shared with a third party. Understanding where PGHD comes from is essential to deciding whether and how it should be added to the patient’s EHR.
- How can regulations, certification, and standards support PGHD-sharing either prior to a consumer’s clinical visit or at the point of care?
- What are the primary obstacles to the use and integration of PGHD in these contexts?
- How can regulations, standards, and other policies best address these obstacles and support the efficient use of PGHD, protect patient privacy, etc?
For other discussions about the role federal regulation should play, see
§4. 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).