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Himss13 patient consent v3 final
1.
Patient Consent: A Vision
for the Future Presentation at HIMSS 13 March 6, 2013 © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
2.
|2| Purpose Enable a discussion around
patient consent management © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
3.
|3| Current Environment  Patient
choices currently limited – “Static,” paper-based – To extent offered, separately administered by each provider/entity – “All” or “nothing” © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
4.
|4| 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 © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
5.
|5| 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 © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
6.
|6| 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 © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
7.
|7| User Interface for
Patient Consent Management © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
8.
|8| Consent Management (Notional) ©
2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
9.
|9| User Interface Core
Ideas Law enforcement Behavioral Health Providers Clinical Health Providers Schools Centralized Choices Trade-Offs Choices Pharmacies Educate Hospitals Human Services © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
10.
| 10 |
Establishing the Patient Policy The reason the information is needed WHY Purpose of Use (Treatment, Emergency, Research, Public Health, etc.) Overall Setting Default setting What topics may need different obligations Sensitive Areas (Mental Health, Substance Abuse, etc) Sensitive Area 1 Setting Setting for specific topics WHAT Sensitive Area 2 Setting Sensitive Area 3 Setting … What is the relationship with the provider requesting WHO Provider information? (closer, more integral to care requires more information) WHEN Date Ranges What is the date range for this consent? © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
11.
| 11 |
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 Least Sharing Most Sharing Mostly Mostly Restrict Share Shared Privacy Risk Medical Safety Risk Minimized Minimized © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
12.
| 12 | Slider
Concept for Expressing Choices Mostly Mostly Share Restrict Shared Share Share Share Share All Nothing immunizations, immunizations allergies, meds & allergies & procedures • 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 © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
13.
| 13 | Education
Mostly Mostly Share Restrict Shared Restrict: Provider Mostly restrict: The Mostly share: Share: All does not need your provider’s decisions Provider needs most information will be medical record to treat are less important to of your medical shared with my care you effectively. If the your overall health information and you team. provider may prescribe and/or you are less are comfortable with medications, consider comfortable with sharing. selecting another sharing. option that allows sharing of medication history and allergies. Dentist A referred provider PCP or Specialist for by your Primary chronic condition Care Provider © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
14.
| 14 | 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.
15.
| 15 | User
Interface Dashboard Why When What Who © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
16.
| 16 | Demo ©
2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
17.
| 17 | Login ©
2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
18.
| 18 | Choices
for Treatment © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
19.
| 19 | Choices
for Highly Sensitive Information © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
20.
| 20 | Choice
for Emergencies © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
21.
| 21 | Choice
for Research © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
22.
| 22 | 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) © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
23.
| 23 | 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? © 2013 The MITRE Corporation. All rights reserved. Approved for Public Release - 13-1050.
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