Patient-Generated Health Data and...

Rita K. Bowen, MA, RHIA, CHPS, CHPC, SSGB,VP, Privacy, Compliance and HIM Policy(Privacy Officer)

Patient-Generated Health Data and Privacy

Agenda• PGHD – Patient-Generated Health Data

• Key Concerns– Provider– Patient– Privacy and Security– Other

• Data Provenance

• Policies & Procedures

• Education

• Opportunities

• Conclusion

Copyright ® MRO Corporation 20162

PGHD

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Defined


“…health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.”

Patient-Generated Health Data (PGHD)


Importance of PGHD

• Provides information about how patients are doing between medical visits

• Gathers information on an ongoing basis, rather than only at one point in time

• Provides relevant information for preventative and chronic care management

• Improves patient safety (i.e. collecting info on meds & allergies)

5 Copyright ® MRO Corporation 2016

Patient-Generated Health Data (PGHD)


Pew Report

• 69% - weight, diet, or exercise routine

• 33% - health indicators or symptoms (i.e. blood pressure, blood sugar, headaches, sleep patterns…)

• 12% - health indicator on behalf of someone for whom they care

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Research shows:



• 45% of U.S. adults who live with one or more chronic condition, 72% of them use the Internet and are more likely (compared to those without a chronic condition) to gather online information, consult online reviews, and read or watch something online about someone else’s personal health experience.– Those with a chronic condition are also more likely to check with a

physician concerning what they find online

• 46% update their tracking data on a regular basis.

• 56% say tracking has affected their overall approach to maintaining health and/or led them to ask a doctor new questions or seek a second opinion.

Research shows:

Pew Report

Technology

• Online questionnaires

• Send information online via secure messaging

• Send reminders to patients to submit data and follow up with patients as needed, based on review of PGHD

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Assistance that will be needed


Provider Concerns


Provider Concerns


Patient Concerns


Key Concerns

• Impact on HIM, IT, and your EHR

• Ramifications on information integrity, privacy and security

• Capture, transmission, and integration of PGHD

• Receiving and digesting PGHD

• Managing the use and maintenance of PGHD

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summarized


Key Concerns

• Workflow burdens: ability to deliver quality care, burden of reviewing large amounts of data, PGHD timely reviews, especially when an urgent response is needed

• Increased liability and accountability

• Patient expectations

• Financial impact

• Secondary sharing: authorization required?

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Summarized


Data Provenance

• “…an organization’s ability to track and verify the origin of clinical information, identify the author that created the documentation, determine who has ownership for usage of the data, and track any changes that are made to the data during its lifecycle.”

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Defined


Data Provenance

• Enables segmentation of information based on source

• Enhances provider trust in information being exchanged between providers

• Enhances provider trust in information received from a patient

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Why it is important


Data Provenance

• Who/What to list as source?– Organization– Provider– Data entry staff– Device details

• At what level?– Entire document (full record has one source listed)– Section (i.e. medication section lists its own source)– Individual data element (i.e. each individual medication lists its own

source)

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Key considerations


Data Provenance

• How to update or modify source when importing/exporting?– List receiving organization as source– List original creator as source

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Key considerations


Know your current state

• How are systems documenting provenance today?

– Considerable variability in how provenance marked and retained in EHRs, PHRs, and HIEs

• Different levels of granularity

• Different practices regarding source

• Different practices when importing/exporting data

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Before you begin


Road blocks to future state

• Provenance at data element level (generally lacking)

– EHRs often export at document level only

– PHRs may import at document/section/data element level, but export at document level only

– HIEs can export at data element level, but sufficient info is not available

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Implications to consider


Data Provenance

• No dominant provenance model

• No harmonized standard currently in place

• Current flow down practice does not meet provider need for granularity regarding origin of data

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Challenges OR Opportunities


Policy and Procedure

• Establish a strategic information governance framework for greater success in the PGHD integration process

• Information to consider when developing policies and procedures:

– What information will be received?

– Through what channel will information be received?

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Must haves


Policy and Procedure

– Who will review the PGHD and when

– What response will be given to the patient and when

– If/when/how the information might be entered into the patient’s medical record

– How to distinguish provider documentation from PGHD

– How privacy and security will be ensured

– How providers are notified when their patients’ PGHS “arrive” for review

– If patients are able to determine the data priority level to alert their providers (i.e. low, medium, high)

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Determine


Preparation

• Educating patient populations and consumers

• Helping clinicians understand impact and relevancy of PGHD in practice, clinic, hospital and other ancillary settings

• Preparing for a career in PGHD education, utilization, management, and maintenance

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Educate, educate, educate


Opportunity

• Determine where the use of PGHD will fit into the care process

• Decide who is responsible for the success of implementing PGHD

• Educate patients on the benefits, uses, and ways to provide health information

• Start small (i.e. medication lists, symptom tracking, administrative info) and make changes as needed

• Build on successes

• Tailor to situational and local requirements and context

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For the Collaborative team


Impact to Population Health


Review and Open Discussion• Consumer technologies will continue to evolve


• Apple –HealthKit

• Google, Samsung Electronics, EHR vendors (i.e. Cerner, Epic…)

What is Next?


Discussion


Contact:


Date post:	07-Feb-2018
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