ONC’s federal advisory committees (FACAs) held a full-day hearing on June 8 (written testimony can be found here) to explore how patient-generated health data (PGHD) might be incorporated into Meaningful Use (MU) of EHRs for Stage 3 of the EHR Incentive Programs. Some examples of PGHD are data from a patient’s personal health record, data from a blood glucose monitor, or information about a patient’s functional status. Three FACA workgroups hosted the hearing: The Health IT Policy Committee’s MU and Quality Measurement Workgroups, and the Health IT Standards Committee’s Consumer Engagement Power Team.
The hearing built off of not only the committee’s previous MU recommendations, but also its 2010 hearing on patient and family engagement. The blog generated several dozen thoughtful comments after the 2010 hearing, and we hope that will be the case with this blog post! ONC and the FACAs look forward to additional input via this blog, which will help inform the workgroups’ and committees’ future deliberations on recommendations for Stage 3. We encourage you to voice your perspectives in the comments section below.
In particular, the hearing and discussion among committee members generated many areas and concepts of great interest upon which we would appreciate comment. We’d greatly appreciate input on the following questions:
- How can we ensure that patients’ reports of symptoms and their knowledge of their own contraindications make their way into EHRs?
- Although there clearly is a need to have a structure for PGHD, does all PGHD for care management need to be in a structured form?
- In order to manage the legal, policy, and operational issues associated with provider collection of PGHD, what should individual providers do to ensure they have a plan for managing that data?
- Patients – particularly those living with chronic conditions – have an ongoing stream of information, for which clinical encounters with the delivery system are infrequent data points. What is the relationship between that data stream and the EHR?
- Although PGHD has some specific needs, identification and sourcing of all data sources are important; how can addressing PGHD management issues help clarify how data sources are tagged more generally in the EHR?
- For which health issues is it clear that patients and families are the authoritative source?
- How should we balance the need to build in the capability for providers to incorporate structured PGHD into the EHR without being overly prescriptive?
- Similarly, how should we balance the concern about being overly prescriptive with ensuring a certain degree of interoperability, usability and understandability of PGHD?
- What important implications does PGHD have for the robustness of clinical decision support, quality measurement, and care coordination?
- How can collection of PGHD address health disparities and what cautions exist to ensure that disparities are not widened?
We look forward to hearing from you.
Collection of information can be obtained by a dynamic personal health record linked to the patient history (under patient entry) that includes health literacy tool ( survey), patient activation measure ( tool), pain management index, mental health status check ( survey or tool), symptom severity index, medication efficacy index ( plus adverse . side effects measure, SES ( Socio-Economic- Status) index, community health resource assessment, caregiver provider status, and timeline changes index for the above on quarterly or semiannual basis?). This information would necessarily be both structured and free text based and then screened by computer algorithm and flagged for staff attention as needed for further clarification, verification, etc. This information is melded with known clinical condition and symptoms of patient I( if already in system) or flagged for recall, new patient visit, followup labs, etc.
Health issues that are authoritatively sourced to the patient or family?
1. These could include genetic tests, family history that are positive for known conditions. Conditions that precipitated health problems congenital disorders, environmental contamination, depression, anxiety, PTSS, concussion history, or that the family has prior knowledge of that may not have been provided, etc. Some other things that come to mind are drug and alcohol abuse, physical or sexual abuse, eating disorders, poor hygience, behavioral disorders triggered by known stressors. This is a tough question since much of the information may be guarded or suppressed as part of the family dynamic. Perhaps a test or tool that indicates predisposition / tendencies that indicate problematic concerns can be administered. However, a home visit at the least and more preferably a formal intake would be advised.
2. The other side of this question could be what health issues could be sourced with appropriate interventions and support so that the family or patient could self manage after treatment, intervention, education, and support has been provided. Chronic conditions that might be proactively managed would include diabetes, asthma, arthritis, etc provided patient and family were adequately aware of when to seek medical guidance ( red flags,etc).
How can collection of PGHD address health disparities and what cautions exist to ensure that disparities don’t widen?
1. Computer algorithms could be developed that check PGHD against the existing patient EHR that automatically flag alerts similar to medication alerts when combined with other medication, homeopathic remedies, etc. As part of the of the PGHD perhaps there is a weighting of accumulated data that triggers a response when entered into the EHR. I envision a program similar to Watson that collects and processes all of the data input from the PGHD and EHR and then alerts a care provider team member with known conflicting information, potential adverse events or side effects, or indications for specific followup test / provider notification.
very good…………chuot khong day
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It is our opinion that PGHD is the most important information in the EHR from the patient point of view. The question becomes what type of product needs to developed: open, closed or a hybrid of both.
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think that a nationwide platform holding the PGHD would make it a lot easier for both patients and doctors.
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PGHD is incredibly important for the patient. Consider it from just a technological stanpoint. Since almost all medical records are moving to EHR or electronic health records, and our computers continually get faster and can store more data, in my opinion, why not gather all the data possible? Patient input would be incredibly relavent to the diagnosis that a doctor may give. I’m still trying to get more information on the Incentives for EHR on Stage 3. As a member of a practice, my 5 doctor’s would be very interested.
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I am currently working on a Grad Paper on this subject for Kaiser and OHSU. My finding to data illustrated the need to incorporate PGHD into Patient Panel Surveillance to provide a more complete view of the patients health.
- Although there clearly is a need to have a structure for PGHD, does all PGHD for care management need to be in a structured form? Any structure that we can put on this data will make it easier for the data to be utilized. I understand HL7 is working on this issue
Patients – particularly those living with chronic conditions – have an ongoing stream of information, for which clinical encounters with the delivery system are infrequent data points. What is the relationship between that data stream and the EHR? – EHR are episodic in nature so are EHRs, ODL or Observations of Daily Living are more of a contiguous steam. I see this as a EHR design Problem. One solution is that the ODL are ingested into the EHR as a Vital.
For which health issues is it clear that patients and families are the authoritative source? –There observation of pain, depression, smoking..
How should we balance the need to build in the capability for providers to incorporate structured PGHD into the EHR without being overly prescriptive? — as we move away from the current payment model the provider will naturally migrate to a wellness model, PGHD has been proven to lead to better outcomes for chronic conditions such as CHF.
What important implications does PGHD have for the robustness of clinical decision support, quality measurement, and care coordination? – many, we must got the patients input when they are outside of the providers office inorder to provider better more patient centric care. He is a quote from Dr John Kitzhaber Gov, of OR on a costly episode that could have been interviened with better care management:
We are only beginning to utilize surveillance in our everyday health/healthcare as it involves the patient and providing meaningful personal interventions. During keynote at the 2010 Oregon HIMSS chapter’s annual meeting, Oregon Governor, John Kitzhaber, MD told a story of an elderly woman with congestive heart failure living in a sweltering hot home state that, under our current medical system (CMS) that we have in United States today, Medicare will pay for the ambulance to get here to the an Emergency Room, $50,000 of care when she is admitted to the hospital and thousands of dollars in ongoing care once she is released but will not pay for a $200 air conditioner which is all she needs to not have this costly episode . Dr Kitzhaber story illustrates that something as simple as an ambient thermometer that communicates via WIFI or Booth could be part of a patient surveillance that could save lives and payers cost.
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The following are a few excepts from my research that may be helpful.
excerpts:
In order to close the loop and provide a more complete population surveillance including medication non-adherence, and depression in the patient-centric environment, it is necessary to include patient-reported/collected data or Patient Generated Health Data (PGHD) and ODL (Observations of Daily Living
Currently, Population Surveillance is primary used to measure the patient population’s health by clinical providers within clinical settings. With the advent of the smartphone and smart wireless devices we are beginning to see patient surveillance moving outside of the walls of the providers office and without the direct oversight of a clinician.
Tom James, MD and Michael Fine, MD stated in their research of utilizing Patient-reported data along with claims data that, “Data derived from Healthcare Effectiveness Data and Information Set (HEDIS) measures do not accurately predict which individuals will become frequent users of health care resources. Instead, health care plans must incorporate regular and careful monitoring of symptoms through the use of patient-reported outcomes as part of an overall asthma-management strategy to identify patients with disease that remains uncontrolled” .
PROMIS (Patient-Reported Outcomes Measurement Information System) system overview states that clinical lab test and clinical measurements have very little relevance on the chronically ill patients everyday life .
Currently, there are no existing vocabularies that represent specific patient-reported nomenclature and ontology.
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We have been using patient entered data via tablet pcs for years
http://thebreastcancersurgeon.org/hughesriskappsriskmodule/
Patients have more onformatiothan most EHRs, nad tablet generated surveys ask every question, while MDs get bored and stop asking before all data is available.
The best is pt entered data that is then enhanced with Clnician data and what data exists in teh EHR. This is our goal
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I think that a nationwide platform holding the PGHD would make it a lot easier for both patients and doctors.
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It is our opinion that PGHD is the most important information in the EHR from the patient point of view. The question becomes what type of product needs to developed: open, closed or a hybrid of both. It is our opinion that all EHR development must always be patient centered, so that all people can connect their personal information to the EHR.
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Thank you for this great article and for the chance to voice our opinion. As a student I just start to learn more about this topic.
How can collection of PGHD address health disparities and what cautions exist to ensure that disparities don’t widen?
With the support of computer technology and software a matching of the data could be ensured. This way health disparities don’t widen even more. In addition regular controls should occur.
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PGHD is, in my opinion, some of the most important information that can be kept regarding a patient’s life in general – providers rarely have the full picture of everything that can affect a diagnosis, and even just seemingly insignificant factors that would otherwise be overlooked can be given the attention due when in the right hands.
It will inevitably be a great challenge for both patients and providers to learn to filter and capture the critical elements of their own PGHD and to disregard the “noise,” but it is a challenge that our society is up to, I believe. We have learned – for the most part – to deal with it in many other realms of our society today ever since the advent of the internet, and I’m convinced that it is an ability that will become all the more necessary in the future as technology progresses. As for what kind of tech could help us in our data management today? Well, I unfortunately don’t have an answer for that. I think many providers already have a very difficult time managing data – not just from their own records but integrating with other providers for a more holistic picture – that adding PGHD into the mix is clearly going to be difficult. But in my mind it is an absolutely necessary adaptation to be made.
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