Advancing the use of patient-generated information to improve health and care

Providers base their care decisions on a wide variety of patient information, such as patient and family history, vital signs, reports of symptoms or response to treatment.  This information traditionally is created in a visit to a provider or laboratory, but there are increasing examples of information being created by the individual or caregiver outside the clinical setting and reported to the provider.  This information is known as patient-generated health-information (PGHI) or patient-generated health data (PGHD). 

PGHD has been described as health-related data created, recorded, gathered or inferred by or from patients, family personal caregivers or designees to help address a health concern.  This data could be an observation, a test result, a device finding, a confirmation or a change/correction/addition of data in the patient’s existing health record.

While PGHD is not new, there are no widely accepted practices or policies to define its best use, much less to support its growth as a valued health care tool.  Beginning in 2012, ONC initiated a series of policy activities to advance knowledge of the field and promote implementation.   As 2013 draws to a close, we are pleased to report that a lot of progress has made.  A report from a Technical Expert Panel, convened at our request by our cooperative agreement partner the National eHealth Collaborative, captures the breadth of issues and opportunities for wider use of patient-generated information.  Their work contributed to positive discussions by the HIT Policy Committee and HIT Standards Committee in their respective December meetings about including a PGHD objective in Meaningful Use Stage 3, which is still under development.

A new Issue Brief, Patient-Generated Health Data and Health IT [PDF - 307 kb], describes all the work to date and a range of opportunities and next steps.   We look forward to building on all the input to help shape policy and standards work in 2014 and beyond.

With all good wishes for happy holidays and a healthy New Year!

11 Comments

  1. The more information we do have on patient the better we are in our office so we can stay on top of any type of changes in the patient.

  2. Thanks,

    I’m working on an application that will collect standardized functional status measures from rehabilitation patients for Quality Reporting programs that are becoming mandated for outpatient and clinic-based rehabilitation providers.

    Tim Richardson, PT

  3. With PGHD helping with the data this could be a big break in the health industry when information is needed right away.

  4. We need to be committed to our patients and the more information we do have on them the easier it will be to take care of them. Having family history on a patient can be a substantial when trying to diagnose a patient. Thank you PGHD!

  5. Shawn Myers says:

    Thank you for the issue brief. Excellent overview of the current landscape around patient generated health data. I noticed no mention of the new HL7 CCDA header templates developed to accommodate PGD in clinical documents. This was a major accomplishment within the standards community.

    Best of health,
    Shawn Myers, RN, MBA
    Healthwise

  6. Having participated in these thoughtful deliberations, I would like to thank MaryJo Deering for an excellent summary. In my mind, the rapid progression of big data and big data analytics, whether from provider sources or from consumer sources drives us to a new era of thinking about what constitutes the “Legal Medical Record”. While the traditional view is that data entering the record must be reviewed by a human, these new data sources, including self-reported and streaming sensor data, clearly challenge that historical tenet. We must rapidly develop and implement real-time analytic capabilities that monitor these data streams and selectively escalate to a human. 6 types of escalation filters 1) suspicious as artifact, 2) outlier value, 3) outlier trend, 4) outlier data constellation, and 5) outlier constellation trend, and 6) outlier to personal nomograms. Once we have those filters in place, and validate them, the fears of human clinicians about allowing data to enter “unveiled” will diminish. However, in the meantime, we can no longer deny the value or the opportunity of using these data. Also, atomic level provenance is critical to assigning integrity and veracity to similar data from different sources with different provenance. We need to find that path to atomic level provenance, which is a machine function with modest overhead. Also, my functional definition of what constitutes the “legal medical record” embraces this approach because the definition I use is “whatever is relevant to a clinical decision”. The fluorishing of untethered EHRs will further drive this broader definition of “what’s in and what’s out” based on either aberrant historical artifactual definitions, or a more person centric view of the future. Clearly I prefer the latter.

    • One additional element to my post above. We will need to learn how to identify the ‘signal in the noise’ and over time curate what is retained in a record based on what proves to be useful. Data overload is already an issue, so progress towards what it meaningful and retaining those data becomes very important. I have also advocated the use of an ‘accordian model’ for opening to new ideas, data, treatment options periodically and then after an evidence-based curation of what is important and what works, closing the accordian down, but never permanently, more accurately reflecting a deliberate process of opening and closing based upon defined strategies and entry/exit criteria for when to open and when to close the process. The current model of “linear progress” to accumulating data is demonstrably flawed, and the avalanche of big data and big data analytics will help highlight that flaw.

  7. Really helpful information.
    Good for reducing cost of health care system.
    Informative blog thanks for sharing.

  8. I’m one of the many persons who are happy with the transformation of technology in the health care. Our world has been radically transformed by digital technology, we have at our fingertips access to a range of data and services to help us improve quality and convenience of patient care, cost-effectiveness, and efficiency. It is also clear that a paper record system is outdated and in need of improvement. Providers are now seeking ways to help patient improve their health outcomes and to further promote as well as adopt a better health care system.

    The healthcare industry needs to undergo a cultural shift that affirms customer satisfaction and patient communication. With other industries relying on and using technology so efficiently, its about time that the healthcare industry takes attention.

  9. Healthiack says:

    I think that the more information a doctor has when setting a diagnosis for a patient, the better. I found PGHD information to be available just great! With this information at hand when diagnosing a patient there could be much less misdiagnosed cases.
    Regards, H

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