himss13 patient consent v3 final

© 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.

Presentation at HIMSS 13

March 6, 2013

Patient Consent:A Vision for the Future

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Purpose


Enable a discussion around patient consent management

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Current Environment

Patient choices currently limited– “Static,” paper-based– To extent offered, separately administered

by each provider/entity – “All” or “nothing”


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Vision for the Future (1 of 2)

Patient indicates preference levels for sharing – What personal data should/should not be shared– Who can send/receive, when, and for what purpose– Framework translates complexities into actionable,

easily understood choices– Choice options supported by just in time, context

sensitive education to ensure meaningful choice Generalized and Centralized

– Web-based, one-stop shopping for the patient– One set of choices can be used to specify different

consents for different providers


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Vision for the Future (2 of 2)

Flexible– Granular choices go beyond simple “yes” and “no;” “all”

or “nothing” options– Choices easily updated– Extendable to allow inclusion of additional criteria

Available– Open source– Web-based


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SAMHSA & MITRE Initiatives

Substance Abuse and Mental Health Service Administration (SAMHSA) involved extensively in HL-7 standards and ONC S&I DS4P implementation guide development

MITRE, as a federally funded research and development center, invested funding in research on a nationwide consent management approach

SAMHSA engaged MITRE to leverage research for development of a User Interface to express patient consent preferences– Interoperable with DS4P S&I Initiative Pilot

Visit the Interoperability Showcase

– Investigate meaningful choice Represent and educate on trade-offs among sharing options



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User Interface for Patient Consent Management

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Consent Management (Notional)

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User Interface Core Ideas


Choices

Educate

Trade-Offs

Centralized Choices

Clinical Health Providers

Hospitals

Law enforcement

Schools

Pharmacies

Behavioral Health Providers

Human Services

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Establishing the Patient Policy


Purpose of Use

Overall Setting

Sensitive Areas

Sensitive Area 1 Setting



…

The reason the information is needed (Treatment, Emergency, Research, Public Health, etc.)

Default setting

What topics may need different obligations(Mental Health, Substance Abuse, etc)

Setting for specific topics

WHY

WHAT

ProviderWHOWhat is the relationship with the provider requesting information?(closer, more integral to care requires more information)

WHEN Date Ranges What is the date range for this consent?

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Trade Offs

Limited sharing => Not available for clinical decisions– Certain information is more sensitive to this risk

Example: Patient prescription for methadone– Sharing may disclose treatment for substance abuse and related privacy risks– Not sharing may increase risk of adverse drug interactions in an emergency

situation– Granular choices may allow patients to balance risks


Mostly Restrict

Mostly Shared

Share

Least Sharing Most Sharing

Medical Safety Risk Minimized

Privacy Risk Minimized

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Slider Concept for Expressing Choices

• Ask the patient their willingness to share• Pair: Recipient and Topic for specific Purpose of Use

• System does the work• Show policy generated• Goal to show patient effect on their record


Mostly Restrict

Mostly Shared Share

Share Nothing Share

immunizations & allergies

Share AllShare

immunizations, allergies, meds & procedures

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Education


Restrict: Provider does not need your medical record to treat you effectively. If the provider may prescribe medications, consider selecting another option that allows sharing of medication history and allergies.

Mostly restrict: The provider’s decisions are less important to your overall health and/or you are less comfortable with sharing.

Mostly share: Provider needs most of your medical information and you are comfortable with sharing.

Share: All information will be shared with my care team.

A referred provider by your Primary Care Provider

PCP or Specialist for chronic condition

Dentist

Mostly Restrict

Mostly Shared

Share

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Provide Education to the User

Links to eConsent educational material

– ONC funded project to “Educate and inform individuals of their option to give individual choice (e.g. automate informed consent process, patient-centered decision making process) in a clinical setting to share their health information electronically.” http://healthit.hhs.gov/pdf/E-consent%20Trial%20statement%20of%20work.pdf

Contextual help

– Definitions

– Trade-off alerts

– Recommendations© 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.

http://healthit.hhs.gov/pdf/E-consent%20Trial%20statement%20of%20work.pdf



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User Interface Dashboard


Why

What

Who

When


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Demo

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Login


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Choices for Treatment


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Choices for Highly Sensitive Information


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Choice for Emergencies


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Choice for Research


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Some of the Challenges

Effective education on trade-offs– Understanding how preferences affect the release of

information in a given situation – Understanding the risks associated with sharing or

protecting information

Infrastructure to support this type of approach– DS4P pilots– SAMHSA’s open source ACS service (in development)


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Areas for Discussion

Patient Consent User Interface feedback What policy or actions would facilitate empowering

the patient? What needs to be in place for providers to accept and

use generic patient consents? Does a granular approach to health record data

introduce additional questions? How do current events influence how this should be

approached?


himss13 patient consent v3 final

Health & Medicine