Care Coordination and Interoperable Health IT Systems

1. Care Coordination and Interoperable Health IT Systems Unit 11: Supporting Patient-Driven Care Coordination Lecture b – Patient Preferences for Information Sharing 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 http://creativecommons.org/licenses/by-nc-sa/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

3. The need for information sharing • How can patients be supported to share health information with health care providers? • Technology must be designed to match patient needs, wants, and abilities • Patient preferences are essential to flow of patient-initiated information sharing • Patient preferences guide the type of tools that are developed and implemented by health care providers • Preferences guide how information is shared with patients

4. Tools used for information sharing • Most people use technology in their daily lives for banking, shopping, communication, learning, and managing life’s details • Technology for information sharing: • Mobile health apps • 60% of U.S. adults track at least one health metric • Patients are willing to share data to aid in diagnosing and treating themselves or to aid others • Email • Web-based patient portals • Secure text messaging • Patient-initiated registries

5. Organizations • Organizations formed to inform and support patient participation in their health information sharing • The Society for Participatory Medicine • Patent Safety and Quality Healthcare • Office of the National Coordinator for Health Information Technology

6. Current state • A 2015 national survey shows that a majority of patients would use personal monitoring devices and 57 percent of the respondents would share that information with their health care professionals

7. Patient-provider partnership 11.1 Figure (Society for Participatory Medicine, 2016). Used with permission.

8. Demographic considerations • The use of apatient portal and other health information sharing technology allows the patient to choose who and how to share information with family and friends • Although race and financial status had an insignificant impact on information sharing, there were differences in information sharing preferences by age • When developing strategies to support patient information sharing, the age of the patient must be considered

9. Sharing preferences: the elderly • The elderly often share their information with family and caregivers • The elderly wish to retain control of their health care as much as possible • Sharing of information can lead to control struggles • The information sharing process must be fluid as self-care capabilities change in the elderly • Current technology does not allow for a granular level of information sharing, often an all or nothing approach to sharing

10. Sharing preferences: adults • Adults are more engaged with health information technology • Adults are comfortable with tracking and sharing information with their health care team • Adults prefer not to share health details with family and friends • Adults will share health goals publicly

11. Sharing preferences: teens • Over 84 percent of teens research health concerns using the Internet • Reluctant to share health information with family and friends due to fear of being judged • Less comfortable sharing health information publicly • Most (88 percent) do not feel comfortable sharing health concerns or health information with others using social media • Not comfortable sharing health goals with the public

12. Challenges • Provider • Need reimbursement for time needed to review information that has been shared • Undergo culture change from information disseminator to care partner • Current perception that sharing information and asking questions is a challenge to provider knowledge and authority • Patient • Culture change to feel free to research and ask questions • Feeling safe to express thoughts and opinions • Changing view from passive patient to partner in health care

13. Unit 11: Supporting Patient-Driven Care Coordination, Summary – Lecture b, Patient Preferences for Information Sharing • Although tools are emerging that support easier access to information sharing, there are technical and cultural barriers yet to be addressed • Patient preferences for information sharing are influenced by the age and demographics of the patient and family • Age and demographics must be taken into consideration when developing tools and processes for information sharing

14. Supporting Patient-Driven Care Coordination References – Lecture b References Crotty, B, Walker, J, Dierks, M, Lipsitz, L, O’Brien, J, Fischer, S, Slack, WV, & Safran, C. (2015). Information sharing preferences of older patients and their families. JAMA Internal Medicine. 175(9):1492. Northwestern University. (2015). Teens turn to Internet to cope with health challenges ScienceDaily. Available from: https://www.sciencedaily.com/releases/2015/06/150602075750.htm Physician’s Weekly. (2016). Examining information sharing preferences Available from: http://www.physiciansweekly.com/examining-information-sharing-preferences/ Prasad, A, Sorber, J, Stablein, T, Anthony, D, & Kotz, D. (2012). Understanding sharing preferences and behavior for mHealthdevices. WPES'12. 2012;:117-128. Charts, Tables, Figures 11.1 Figure: Society for Participatory Medicine. (2016). Patients overwhelmingly believe in partnership with their clinicians to improve overall health. Used with permission.

15. Unit 11: Supporting Patient-Driven Care Coordination, Lecture b – Preferences for Information Sharing 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.