Patient Generated Health Data and Shared Decision Makings3.amazonaws.com/rdcms-himss/files/production... · Consumer Technology Standards . HITPC . Consumer Empowerment . Scope: •

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

Presenter

Presentation Notes

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

http://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

Presenter

Presentation Notes

Challenges Mobilize ecosystem (apps can receive info – CCDA/Direct/payer data) Consumer uptake (get your Direct address here!) Patients can reconcile info received from different providers and sources Provenance and immutability Workflow Electronic Sneaker net See new BB chapter

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

Presenter

Presentation Notes

Give depth to the patient experience – research from the patient’s point-of-view Personify the consumer segments Create journey maps to make the patient engagement framework more approachable to patients and helpful to providers Apply common reference points for policy, standards and industry National eHealth Collaborative Kicks Off New Consumer Engagement Project WASHINGTON, DC (October 21, 2013) – National eHealth Collaborative (NeHC) today announced the kickoff of a collaborative project to develop a Patient Experience Framework. An evolution of NeHC’s widely recognized Patient Engagement Framework, this project marks NeHC’s latest effort to support and accelerate consumer engagement through the use of health IT. Healthcare providers agree that engaging patients should be at the heart of strategies for improving the delivery of healthcare. NeHC recognizes that patient engagement is not one-size-fits-all. Effective patient engagement strategies must be understood from the perspective of both the provider and the patient. The new Patient Experience Framework will help to clarify what it means to meaningfully engage patients. “There is no question that patient engagement in eHealth has become a priority because it will lead to more effective partnerships between patients and their providers and better outcomes,” said NeHC CEO Kate Berry. “We are at the very early stages of cultivating culture change and ongoing engagement among patients, providers and other stakeholders, starting with a better understanding of different perspectives. NeHC’s new effort aspires to contribute to this very important journey.” In 2012, NeHC collaborated with over 150 leading healthcare and health IT thought leaders to develop its widely recognized Patient Engagement Framework. Through the lens of health IT, the Patient Engagement Framework was designed to support the provider’s unique perspective and use of technology. NeHC’s next phase of work will address consumer and patient engagement strategies on behalf of the patient. NeHC will begin the work by asking, “What experience does a patient want to have with their healthcare providers, health system, health records and health education?” The patient experience varies widely according to consumer needs, expectations and cultural contexts, which will require a different approach to this work. Informed by research conducted by Healthwise and leveraging “The U.S. Health Care Market: A Strategic View of Consumer Segmentation” by the Deloitte Center for Health Solutions, the Patient Experience Framework will support multiple patient perspectives. The patient personas that anchor the new framework will define how various patients might interact with their healthcare providers, system, records or education, including their assumptions, motivations and expectations. This will help providers assess the types of consumers they currently address with their engagement strategies, what types of consumers they would like to address going forward and where to invest to accomplish their goals. It will also help those who support healthcare to identify who they would like to impact and where they can make valuable new investments in technology and other services. NeHC plans to map the Patient Experience Framework to the Patient Engagement Framework, such that together the frameworks will provide clarity for stakeholders from multiple perspectives and help the community as a whole continue to make progress in the right direction. Led by Leslie Kelly Hall, Senior Vice President of Policy at Healthwise and NeHC Board member, NeHC and Healthwise have launched a consumer-led process to develop the new Patient Engagement Framework. Hall also led NeHC’s work on the original Patient Engagement Framework. “We are excited to learn about the experience patients want to have with their providers, technology and education,” said Hall. “We believe that the answers will inform the industry and ourselves as patients. Engagement is grounded in trust and aligning the interests and needs of all stakeholders. It creates a better experience and better outcomes.” NeHC is conducting research during the fourth quarter of 2013, with the work expected be completed in early 2014. There are multiple opportunities for organizations to engage in the development of the Patient Experience Framework. Participation in the project will give organizations an early view into how their organization can make plans in alignment with the new framework. In November and December 2013, NeHC will be hosting four NeHC University webinars to help stakeholders understand the personas, discuss feedback received to date and contribute their experiences to the research. For organizations seeking deeper engagement with the project, NeHC will be scheduling focused on-site sessions in which organizational leadership teams can both contribute to NeHC’s research and receive strategic advice on ways to improve the organization’s current patient engagement efforts. NeHC members will also have an exclusive opportunity to participate in a development session with the NeHC Consumer Consortium on eHealth. Sponsorship opportunities are available for companies to support and build on NeHC’s groundbreaking work in consumer engagement. Sponsorship options are designed for companies leading the way in helping providers and payers to meaningfully engage consumers. Each sponsorship offers the opportunity to participate in and contribute to the research as well as partnering with NeHC on a broader dissemination and education program. The final outcome of the Patient Experience Framework project will be freely available to NeHC members and available to non-members for a fee. It is expected to include the following: A Patient Experience Framework that is more personal, approachable and friendly, developed using patient personas and designed to serve as a companion to the Patient Engagement Framework Journey Maps that depict how specific personas think, feel, act, experience and interact with their providers, health system, health records, and education that supports their health A published research report that will include a guide for healthcare communities, providers, health systems and other stakeholders to inform their strategies and investments A roadmap for future Patient Engagement Framework gaps and next steps based upon the findings Consumer engagement in eHealth is a top priority for NeHC because it is a critical element driving better outcomes and greater value. NeHC leads a diverse portfolio of patient engagement related initiatives, including developing and promoting the Patient Engagement Framework and Patient Experience Framework, collaborating to encourage widespread adoption of the Consumer eHealth Readiness Tool (CeRT) – powered by HealthCAWS, building a broad database of organizations providing consumer engagement solutions and support through the CeRT Solutions Directory, convening a project on patient generated health data on behalf of the Office of the National Coordinator for Health IT (ONC) and leveraging NeHC University to showcase patient engagement success stories, challenges and lessons learned. The NeHC Consumer Engagement Advisory Council helps to shape NeHC's patient engagement strategies and programs. Additional information on the Patient Experience Framework project is available at www.nationalehealth.org/patient-experience-framework or by contacting Ian Hoffberg at [email protected].

“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

http://planningroom.org/

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

mailto:[email protected]

Documents

Patient Generated Health Data and Shared Decision Makings3.amazonaws.com/rdcms-himss/files/production... · Consumer Technology Standards . HITPC . Consumer Empowerment . Scope: •