HIMSS Nursing Informatics Executive Engagement Susan Hull, MSN, RN December 5, 2013
Patient Generated Health Data and Shared Decision Making
Objectives
1. Define Patient Generated Health Data (PGHD)
2. Identify how PGHD fits with Meaningful Use objectives
3. Describe how PGHD is being used for data capture, transfer, exchange and review, and shared decision making
4. Preview promising practices and emerging trends/research
5. Discuss how the nursing informatics leadership community can prepare for PGHD
Engaged Consumers Shifting the culture, place and cost of care
• View, Download and Transmit (VDT) health data
• Blue Button • Secure
communications
Consumers Mediating Exchange
• Patient Generated Health Data
• Preference sensitive care
• Shared Care Planning
Shared Decision Making
• Personal health apps
• Sensor/device/home data
• F2F and virtual care
Co-Producing
Care
From Access, Action and Attitudes To Shared Decision Making
Supports Patient Engagement and Access to Data
Effective Oct 2013 (for hospitals), Jan 2014 (for EP), MU requires providers to use secure email with patients and to provide patients with a way to View, Download and Transmit their health information to a third party.
Expert Panel and Resources Phase 1: • Identify good practices for the
use of technology to enhance patient input into their care
• Expert input & environmental scan
• Policy guidance report to HITPC for PGHD in MU3, July, 2013
Phase 2: • Report on how practices can
prepare, prioritize and incorporate PGHD, for MU and beyond, December, 2013
Convened by NeHC behalf of ONC
PGHD Definitions
• Health-related data — including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information
• Created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern
• Not new phenomena - not always labeled as PGHD
• Smart phones, remote monitoring devices, apps, and ubiquitous networks are enabling massive growth of PGHD
How is PGHD different?
• Distinct from data generated in clinical settings and through encounters with providers:
– Patients, not providers, are primarily responsible for capturing or recording data
– Patients direct the sharing or distributing of these data to health care providers and other stakeholders
– May or may not be integrated into EMRs, PHRs, HIEs
• Complements provider-directed capture and flow of health-related data across the health care eco-system
• Hybrids emerging with avatar and voice activated response & mobile case management systems
NeHC PGHD Resources
http://www.nationalehealth.org/patient-generated-health-data-project
Common Patient Concerns
• Communication expectations – Did my doctor/care team see the information I sent? – How is my information with others on the care team? – Will I receive a reply? Can I edit and amend information?
• Information sharing expectations – Is the information I send saved in my chart? – Is it shared with my insurer? – Can I share it with my parents, spouse/partner? – Is it secure? Can I segment data for privacy?
• Provider and patient relationship – Is the information I sent valued and well received by my doctor? – Will my preferences, values and lifestyle data be considered in my
care?
Common Provider Concerns
• Clinical workflow, time and work burden
– Having one more data stream to review
– Workflow interruptions and disruptions
– During the visit, episode of care – and outside the 4 walls
• Raised risk or liability
– What if there are large amounts of information to review
– Timeliness, missing information, or patient’s think you have seen somethng you have not
– What if patient is using PGHD for something urgent?
– Data provenance, especially as HIE’s, EMRs, and PHRs mature in use
• Financial impact
– Business impact, cost savings, reimbursement, scope of practice
HHS/ONC FACA Workgroups
Provide recommendations on standards and interoperability
Provide recommendations on policy
HITSC Consumer Technology Standards
HITPC Consumer Empowerment
Scope: • Portability of patient data • Patient access to and generation of their health data • New types and sources of patient data • Co-managing and sharing care plans • Incorporating patient preferences into care plans • Patient reconciliation of medical records from various sources
Strengthening the ability of consumers, patients, and lay caregivers to manage health and health care for themselves or others
Patient Generated Health Data
Active in Care
Roles/Responsibilities Safety Related Administrative Provider/patient initiated Structured/unstructured Device and Tracking
Care Planning
Shared Decisions Home care Transitions Goals and Values
Collaborative Care
Multiple care teams Community support Social support
Sustaining Understanding Awareness
Foundation Now Builds the Future
HHS/ONC FACA Consumer Technology Standards Workgroup
12/5/2013
13
Messaging Structured/ Questionnaire
Unstructured /Narrative
Device Care Plans Collaborative Care
Assumed COMMON MU DATA SET Standards and vocabulary, device/technology agnostic
Standards DIRECT
HL7 Care
Team
Roster
SAML
HDATA
OATH2
Restful
BB+PULL
HL7- CCDA
HL7 Care Team Roster
FHIR
HL7- CCDA DIRECT FDA Continua HL7 Care Team Roster (IEEE Bluetooth NFC ZIGBEE USB HL7 Restful OATH2 SAML CCDA HDATA more)
HL7 – CCDA Care Plan HL7 Care Team Roster
Vocabularies SNOMED CT LOINC
RX-Norm
Recommending Standards MU3 Ready
13
Promising examples PGHD Header Approach to C-CDA Participation PGD info Act Relationship PGD Info Patient Adds clarity for guardian role and
Provider Organization Related Document/ Parent Document
Same as C-CDA
Author Also can be self, related person or legally responsible party
Authorization/ Consent
Same as C-CDA
Custodian Also can be self or an organization supply a PHR application
Component Of/ Encompassing Encounter
Same as C-CDA
Authenticator Also can be self, related person or legally responsible party
Documentation Of/ Service Event
Same as C-CDA – additional constraints may apply for document type
Legal Authenticator
Also can be self, related person or legally responsible party
In Fulfillment Of/ Order
Same as C-CDA – additional constraints may apply for document type
Data Enterer Also can be self, related person or legally responsible party
Information Recipient
Also can be self, related person or legally responsible party
Informant Also can be the patient, related person or legally responsible party
Participant Same as C-CDA; adds use of new value set
HHS/ONC FACA Consumer Technology Standards Workgroup
Eating patterns Medication taking Physical activity Risky drinking Sleep quality Smoking/tobacco use
Behavioral characteristics
Estabrooks, Paul A, et.al., “Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors, J Am Med Inform Assoc 2012;19:575-582 doi:10.1136/amiajnl-2011-000576 Glasgow, RE, et. al.., MOHR, My Own Health Record Pilots in 18 primary care clincs
Patient Characteristics
Psychosocial characteristics
Anxiety and depression Stress Quality of Life
Demographics, Preferences, and Social Determinants of Health
Health Literacy/numeracy
Care Plans with Adherence Monitoring
My Own Health Record (MOHR) Pilots Harmonizing Patient Generated Data in EMR
PHR Ignite Pilots National Association For Trusted Exchange (NATE)
– Consortium of states – Seeking common solutions for optimizing national
exchange of health information. – Overcome policy, governance and technical
challenges of transporting patient data bi-directionally between untethered PHRs (patients) and providers.
– PHR Pilots (with ONC’s State Health Policy Consortium)
– California, Oregon and Alaska » Providers will send structured data to a patient-
subscribed NATE qualified PHR using Direct secure messaging/BlueButton+ specifications
» Patients will send data from their PHR to a second provider using Direct secure messaging/BlueButton+ specifications.
Other states contributing: Nevada, Utah, Hawaii, North Dakota, Michigan and Florida www.nate-trust.org
Blue Button Plus innovation community
Provider 5
Provider 4
1 Patients get their data from providers and other data sources
Patients aggregate their own data 2
Patients share data with providers 3
Use Case A
Use Case B
17
New Consumer Blue Button Resources
Over 500 organizations in pledge community. Over 100M Americans expected to have access to Blue Button by the end of this year.
http://www.healthit.gov/bluebutton
New NeHc Patient Experience Framework How will patients engage with health data?
Deloitte Center for Health Solutions: US Healthcare Market Strategic View of Customer Segmentation
“Nurses are the most-trusted health professionals and have a long history of patient advocacy.”
ANI + ANA join ONC Consumer eHealth Pledge Community
3.1 Million Nurses
Empowered to use eHealth
Touching 18 Million Patients/Yr
Our Pledge
Collaborating to engage nurses Year One Member awareness, education and policy feedback ANI Consumer eHealth Toolkit Year Two Pulse Survey: PHR and Portal Adoption Ten Step Support Plan for members Ask for Your Records Week Year Three Strategic planning for broader impact New Survey: capacity building and competency
needs
Discussion Questions
1. How are you engaging patients today with Patient Generated Health Data (PGHD)?
2. As you prepare for meeting MU Stage 2 requirements for View, Download and Transmit (VDT), what practice and policy issues are surfacing PGHD?
3. What new competencies will be needed for PGHD and shared decision making?
Thank you!
• Susan Hull, MSN, RN
– CEO, WellSpring Consulting
– Member, FACA HHS/ONC Consumer Technology Standards Workgroup
– Member, NeHC Consumer eHealth Advisory Council
– Co-Chair, Alliance for Nursing Informatics Consumer eHealth Engagement Task Force
• [email protected], 707-400-8995
• Twitter: @SusanCHull