1. Care Coordination and Interoperable Health IT Systems
Unit 11: Supporting Patient-Driven Care Coordination
Lecture a – Patient-Initiated Information Exchange
Welcome to Care Coordination and Interoperable Health IT Systems, Supporting Patient-Driven Care Coordination. This is Lecture a, which will cover patient-initiated information exchange.
This material (Comp 22 Unit 11) was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0004.
This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit
Health IT Workforce Curriculum Version 4.0

2. Supporting Patient-Driven Care Coordination Learning Objectives
Objective 1: Explain the importance of patient-driven care coordination
Objective 2: List ways a patient can use technology to drive care decisions
Objective 3: Describe the concept of patient-initiated information exchange
This unit will cover the following learning objectives: 1) explain the importance of patient-driven care coordination; 2) list ways a patient can use technology to drive care decisions; and 3) describe the concept of patient-initiated information exchange. This unit will explore the use of technology to support and enable patient driven coordinated care.
Health IT Workforce Curriculum Version 4.0

3. Information exchange
Patients can manage their care coordination through information exchange technology
Patients can have all of their health information in one location
Health information follows the patient as they move from provider to provider
Patients can share their health information when needed
Patients can easily track and monitor their own health
Patient can update and correct their health or billing information
How can we help place the patient at the center of their care? Can health IT tools support and enable patient driven care coordination? One of the ways that patients can manage their care coordination is through information exchange. The goal of information exchange is to allow patients to have all of their health information in one location. In this model, health information will follow the patient as they move from provider to provider, enabling them to control sharing of their health information, and providing the ability to share information when needed. The information exchange allows patients to easily track and monitor their own health. Also, an information exchange can help the patient to update and correct their health or billing information.
Health IT Workforce Curriculum Version 4.0

4. Technology Blue Button iBlue Button Personal health record (PHR)
Patient portal
Some of the primary technologies that are used for health information exchange include the Blue Button application, the iBlue Button application, the personal health record (PHR), and the patient portal.
Health IT Workforce Curriculum Version 4.0

5. Blue Button
Developed by the U.S. Department of Veterans Affairs (VA) in coordination with CMS and the U.S. Department of Health and Human Services (HHS)
Enables patients to connect with their health plans, electronic medical record providers, and other health care providers to locate, view, and download personal health information.
Blue Button logo (Source: ONC)
Find important information when needed
Make informed decisions
Share information with others
Review health record accuracy
Track scheduled health events
Mobile access
The Blue Button was developed by the U.S. Department of Veterans Affairs in coordination with CMS and the U.S. Department of Health and Human Services. The Blue Button enables patients to connect with their health plans, electronic medical record providers, and other health care providers to locate, view, and download personal health information. The Blue Button allows patients to find important information when they need it, gather information to make informed health decisions, share personal health information with others, review personal health records for accuracy, and track scheduled health events. Information is available in a mobile format so that it can be accessed anywhere.
Health IT Workforce Curriculum Version 4.0

6. Blue Button challenges
A connection must be made to each separate organization where care was provided
Not all organizations have joined the Blue Button initiative
Cannot make corrections to medical record using Blue Button
Although the Blue Button provides a standard method to view and download patient information from multiple sources, the technology does not completely support patient-driven care coordination. If health care has been provided by multiple organizations, the patient will need to make separate connections, through the Blue Button, to each organization in order to view information. In addition, not all organizations have joined the Blue Button initiative. The Blue Button allows the patient to review records for accuracy, but changes and corrections to records cannot be done within the Blue Button application.
Health IT Workforce Curriculum Version 4.0

7. iBlue Button
Combines information into one record from health care providers such as Medicare, VA, insurance plans, and health records
Organizes all of these records into a summary view
Accessible on a mobile device
Health information can be viewed and annotated
Links to information that allow the patient to learn more about health topics or better understand terms
Allows records to be sent directly to a care provider’s computer or iPad
The iBlue button provides two applications, one for patients and one for care providers
Patient can correct their health information right on the app
The iBlue Button must be purchased by consumers and providers
The iBlue Button was developed in response to an ONC challenge to improve patient-initiated information exchange. The iBlue button takes the Blue button one step further by combining information from health care providers such as Medicare, the VA, insurance plans, and health records sent by care providers into one record. The application organizes all of these records into a summary view accessed on a mobile device. Health information can be viewed and annotated. The iBlue Button also includes links to information that allow the patient to learn more about health topics or to better understand terms. The iBlue Button application allows records to be sent directly to a care provider’s iPad, and the care provider can send information back to the patient’s iBlue Button application. The iBlue button provides two applications, one for patients and one for care providers. Unlike the Blue Button, the patient can correct their health information right on the app.
Health IT Workforce Curriculum Version 4.0

8. iBlue Button challenges
Not all providers are participating with iBlue Button
iBlue Button has a cost for download and use
Use of iBlue Button app is not widespread
The iBlue Button was designed to improve on Blue Button functionality. Although the iBlue Button combines records from multiple providers into one easy view, not all providers are participating with the iBlue Button process. The Blue Button is free, however, the iBlue Button must be purchased by consumers and providers. At this time, the iBlue Button app is seeing limited use.
iBlue Button logo (Source: ONC)
Health IT Workforce Curriculum Version 4.0

9. Personal health record (PHR)
Patient-initiated electronic record that is separate from the EHR
Contains information selected and added by the patient
Allows the patient the ability to update and change their health information at any time
Provides the patient the ability to share this information with anyone that they choose
The personal health record (PHR) is a patient-initiated electronic record that is separate from the EHR and contains information selected and added by the patient. The PHR allows the patient the ability to update and change their health information at any time, and provides the patient the ability to share this information with anyone that they choose to share with.
Health IT Workforce Curriculum Version 4.0

10. PHR challenges Patient must add health information manually
Patient must update health information manually
Limited ability for providers to send information directly to PHR
The PHR provides a patient the most control of their health information. There are some drawbacks to this technology. Although some medical devices and wearable trackers can feed data into a PHR, very few electronic health record vendors currently interface into the PHR, leaving the patient responsible for entry and updates to information. In addition, providers cannot send information directly into most PHR products, leaving the patient to enter the updates.
Health IT Workforce Curriculum Version 4.0

11. Patient portal
Patient access to portions of the electronic medical record managed by their health care provider
Accessed through a secure login site
Associated with one health system
Contains records from health care provided only within that system
The patient portal allows patients access to portions of the electronic medical record through a secure login site. The patient portal is typically associated with only one health system and will contain records from health care provided only within that system.
Health IT Workforce Curriculum Version 4.0

12. Patient portal challenges
Health information for care delivered within one health care system
Each patient portal is different
Not all information may be available in the portal
The patient portal contains a wealth of information for the patient to view and download. But, until electronic health records are interoperable, a patient portal will typically contain only the health care information generated within one health care system. Information available to the patient may differ from one patient portal to another, and the patient may have to make a request for information not displayed in the portal.
Health IT Workforce Curriculum Version 4.0

13. Additional barriers
Although development and implementation of technologies designed to support patent-initiated information sharing are proceeding at a fast pace, most of these solutions do not yet provide a true seamless exchange of information
Barriers:
Technical
Social
Cultural
Legal
Although development and implementation of technologies designed to support patent-initiated information sharing are proceeding at a fast pace, most of these solutions do not yet provide a true seamless exchange of information. Technical, financial, cultural, and legal barriers still remain.
Health IT Workforce Curriculum Version 4.0

14. Technical barriers
Data standards allow for information from one system to integrate into another system
No standards creates an inability to integrate information meaningfully into other health records
Medical language needs to be updated to a patient-friendly vocabulary
Technical barriers continue to present an obstruction to true patient-initiated health information exchange. Some of these barriers include a lack of data standards. Data standards provide the ability for data from one system to match and integrate with data from another system. Without these standards, there is an inability to completely integrate information into one record. Another barrier is the need to change from medical language to a vocabulary that is patient-friendly.
Health IT Workforce Curriculum Version 4.0

15. Financial barriers Patient cost to access and use technology
Provider cost to access and use technology
Slow public acceptance and value of PHR technology
Failed PHR start-ups
Hesitation to invest in future PHR technology
Financial barriers to patient-initiated health information include costs to the patient and provider for access and use of personal health information technology. Technology and equipment, such as a smart phone, an Internet connection, or a computer are needed to take advantage of electronically sharing patient health information. The public is slow to realize the value of personal health records and is reluctant to pay for this technology. Several patient health record startups have failed in the past decade due to a lack of users. Because there is not widespread public acceptance and value of this technology, investors are hesitant to devote large sums of money into the ongoing development of technology that may not be profitable.
Health IT Workforce Curriculum Version 4.0

16. Cultural barriers
Physician-directed model of care does not take into account information-sharing
Physicians fear information overload when patient information is shared
Patient must also understand and adopt a relationship-based care model
Patient needs education and information about technology that can be used to share information
Both patients and providers are moving towards an understanding and acceptance of patient-initiated health information exchange, however, there are cultural barriers to overcome. Providers fear that they will have to deal with massive amounts of information that will impede their ability to care for their patients. Many providers are still transitioning from a physician-directed model of care to a relationship-based model of care. In a physician-directed model of care, sharing of information is one-sided, from the physician to the patient. This model of care does not support or value patient information sharing. Cultural shifts also need to occur within the patient culture. As the patient moves to greater understanding and use of a relationship-based model of care, education and information will be needed to increase the patient’s awareness and incorporation of bi-directional information sharing.
Health IT Workforce Curriculum Version 4.0

17. Legal barriers
Who owns the patient’s data? The provider and health-care system or the patient?
Will there be more litigation if the patient can see their medical record?
Another barrier to information sharing is based on legal concerns. The ownership and use of patient data, especially when generated by health care providers, is still being debated. In a physician-directed care model, patient information is controlled by the physician and the health care organization. Providers fear that opening up all medical record data to the patient can cause increased liability and legal action.
Health IT Workforce Curriculum Version 4.0

18. Barriers to patient-initiated information exchange: summary
Technical
Lack of data standards
Lack of patient-friendly vocabulary / language
Financial
Cost of access to and use of technology
Slow public acceptance and value of PHRs
Hesitation to invest in PHR technology
Cultural
Physician-directed model of care
Potential for information overload
Lack of patient education
Legal
Unclear ownership of data
Uncertainty for increased litigation

19. Unit 11: Supporting Patient-Driven Care Coordination, Summary – Lecture a, Patient-Initiated Information Exchange
The goal of patient-initiated information exchange is to place the patient at the center of all of their data and to create a seamless flow of information
Technology that supports patient-initiated information exchange includes: Blue Button, iBlue Button, personal health records (PHRs), and patient portals
Ongoing work needs to be done to achieve fully seamless sharing of data
This concludes lecture a of Supporting Patient-Driven Care Coordination. To summarize, the goal of patient-initiated information exchange is to place the patient at the center of all of their data so that information can seamlessly flow to the patient and then to anyone with whom they choose to share the information. The Blue Button, the iBlue Button, the PHR, and the patient portal each help patients to share information, however, ongoing work needs to be done to achieve fully seamless sharing of data.

20. Supporting Patient-Driven Care Coordination References – Lecture a
Health IT Buzz. (2014). Patients can view and check their EHR for errors using Blue Button. Available from:
Issue Brief: Patient-Generated Health Data and Health IT [Internet] [cited 4 May 2016]. Available from:
Murphy-Abdouch, K. (2015). Patient access to personal health information: regulation vs. reality. Perspectives in Health Information Management. Winter 2015:1-10.
Office of the National Coordinator for Health Information Technology. (2016). Blue Button Connector. Available from:
Office of the National Coordinator for Health Information Technology. (2016). Issue Brief: Patient-generated health data and health IT. Available from:
Office of the National Coordinator for Health Information Technology. (2016) What is HIE (Health Information Exchange)? Available from:
No audio.

21. Supporting Patient-Driven Care Coordination References – Lecture a (Cont’d)
Open Health News. (2016). Humetrix calls for Burgess interoperability bill to add provider/patient EHR exchange. Available from:
Williams, C, Mostashari, F, Mertz, K, Hogin, E, Atwal, P. (2012). The strategy for advancing the exchange of health information. Health Affairs. 31(3):
No audio.

22. Unit 11: Supporting Patient-Driven Care Coordination, Lecture a – Patient-Initiated Information Exchange
This material was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0004.
No audio.