How Patient Generated Health Data Technologies Can Support and Improve the Quality of Health Care Delivered to Diverse Populations

Transcription

1 How Patient Generated Health Data Technologies Can Support and Improve the Quality of Health Care Delivered to Diverse Populations Presentation at the Multiethnic Advocates for Cultural Competence 2016 Statewide Training Conference Columbus, Ohio October 7, 2016 Ferne A. Ziglar, The Ferneway Company 1

2 The New Era in Healthcare: The Digital Transformation Healthcare shifts from a Fee-for-Service model to a Value model. Digital technology is driving healthcare industry. Providers and patients are becoming partners. 2

3 On the Cusp of Digital Change Transportation, banking, travel, hospitality, food industries offer consumers digital convenience. Healthcare is only on the cusp of digital change. 3

4 #Health IT Matters The Potential Health Information Technology: A promising tool to improve the quality and efficiency of care Empowers patients as active participants in their health. Can lead to optimal health for all. 4

5 Health IT: Does it Really Matter? The Million Hearts Initiative Using Technology HIT: Used by providers and patients and their families to coordinate care. Use of HIT tools promotes patient engagement and activation for individual self-management. Improves the effectiveness of care through feedback on care experience, reporting and sharing; ultimately leads to evidence-based shared decision making and research. 5

6 What ya got for me? Is it Health IT? Health Information Technology Electronic Health, i.e. ehealth Digital Health Mobile Health Health Equity ehealth Equity 6

7 A Palette of Technologies Electronic Health Records Personal Health Records Patient Portals Mobile Applications Virtual Visits Secure Messaging/Texting Telehealth 7

8 Barriers to ehealth Access & Adoption, i.e. ehealth Equity Lack of health literacy Lack of linguistic and cultural competency in ehealth Access limitations for people with disabilities Privacy concerns and distrust of the healthcare system 8

9 More barriers to ehealth Access & Adoption Lack of digital literacy Limited or no access to broadband and mobile data. Limited or no access to technology platforms and interoperability Lack of awareness of ehealth 9

10 A Call to Adopt ehealth Technologies Ethnic populations outpace others in smartphone ownership---important implications for personal management of health. Get educated, take ownership of ehealth adoption. Inspire people of color to pursue career opportunities in health IT. 10

11 ehealth: The Roots 2009: American Recovery and Reinvestment Act (ARRA) jump started the digital healthcare revolution. 2009: Health Information Technology for Economic and Clinical Health (HITECH) Act mandated and incentivized hospitals and health care providers to adopt technology. 2010: The Patient Protection and Affordable Care Act provides additional support for workforce training and development in HIT. 11

12 Achieving ehealth Equity: 2013 White House Summit Identified Challenges and Opportunities for using ehealth tools. Built relationships and opportunities for collaborations. Motivated participants to develop solutions to achieve ehealth equity. 12

13 Patient Generated Health Data: By the Patient, For the Patient As defined by the Office of the National Coordinator for Health IT, patient-generated health data are 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 to help address a health concern. 13

14 PGHD: Not the Same as Clinical Data Patients, not providers, are primarily responsible for capturing or recording these data. Patients decide how to share or distribute these data to health care providers and others. 14

15 Is PGHD Really New? Consumers have been generating their health data for years. 60 percent of U.S. adults claim to track their weight, diet, or exercise routine. No widely accepted practices or policies to define its best use. 15

16 Many Types of PGHD Patient experience surveys Patient-created health goals A confirmation or a change/correction/addition Reports of symptoms Blood glucose monitoring or blood pressure readings using home health equipment Test results Response to treatments Exercise and diet tracking using a mobile app 16

17 More Types of PGHD Vital signs - Patient (or patient proxy) measured vital signs by means of a device and recorded by patient (or proxy) Self-reported adherence to medications and wellness protocols, self-reported (recorded by patient or family member) & lifestyle data. Advance directives A finding on a device Patient values and preferences 17

18 How PGHD Works Requires the engagement and participation of the patient. Collects information (data) via mhealth apps and remote patient monitoring systems. 18

19 How PGHD Works From data capture, to data transfer, to data review. 19

20 PGHD Examples: Tools & Devices Wrist-worn accelerometers with software that calculates daily footsteps and sleep Diabetes goal tracker uses PGHD data from mobile tech to better manager diabetes Web-based health journaling tools, smart online food diaries Networked weight scales or blood pressure machines 20

21 Dealing with the Data Providers base their care decisions on information, i.e. data. New technologies enable patients to generate important data outside of doctor s office, hospital, other settings. 21

22 Know Your Numbers: It s the Data Providers base their care decisions on information, i.e. data. 22

23 Why PGHD are Important Provides important information about how patients are doing between medical visits. Gathers information on an ongoing basis, rather than only at one point in time. Provides information relevant to preventive and chronic care management. 23

24 Reform Promises Meaningful Access to Diverse Populations Meaningful access: timely and affordable access to data, knowledge, and tools, through electronic and traditional media, that enable consumers to make informed decisions and to manage their health. More people have broadband, smartphones. National healthcare reform increases urgency for the health care sector to address ehealth equity. 24

25 How PGHD Benefits Results in more accurate assessments of patients. Changes the way providers interact with their patients outside of the office. Helps healthcare experts develop new treatment plans. Empowers patient as an important partner in care. Improves value of care. Liver patient tells her story in Health IT Buzz (Donna Cryer). 25

26 Patient Reported Outcomes: It s Time Patients spend most of their time outside the doctor s office at home, at work or at school. Patient reported outcomes are at the center and are pivotal in improving care. Patient-reported outcomes seem to be the next horizon in quality reporting and scoring. 26

27 Investing in PGHD Policies ONC is developing a policy framework that identifies best practices, gaps and opportunities for progress in the collection and use of PGHD for research and care delivery through ZeroDivide s 2014 policy paper, ehealth and Underserved Populations, recommended both top down and bottom up policy approaches. 27

28 Brainstorm Breakout Groups 1. Brainstorm ways you would like to use ehealth tools for yourself, family and your community. 2. How can we raise awareness about the importance of using PGHD technology to decrease disparities for underserved groups? 3. How do we engage diverse populations in adopting and using PGHD technologies? 28

29 Brainstorm Breakout Groups 3. How can we incentivize the technology and health care industries to develop and adopt the ehealth tools necessary to support the needs of culturally diverse and underserved people? 4. How do we cultivate a workforce of technology developers that can influence more culturally appropriate ehealth tools? 29

30 Workshop Break 30

31 The Evolution of the Healthcare Consumer: Where Are You on the timeline? 31

32 Health IT Requires Uniform Technical Standards The Office of the National Coordinator for Health Technology (ONC ) is responsible for standards in: Data definitions Communication protocols, Data analytics Other areas critical for information exchange, e.g. PGHD and interoperability 32

33 Clinical Use: Kaiser Permanente My Health Manager patient web portal provides members access to their health information and tools. 33

34 Clinical Use: Partners Healthcare Center Remote Monitoring programs allow patients to track their health, securely share their health data with their provider. 34

35 Clinical Use: Video Remote Interpreting Video Remote Interpreting enables Limited English Proficiency or deaf patients and clinicians connect from hospitals and clinics to medically qualified interpreters. 35

36 Clinical Use: ENGAGE ENGAGE: Hospital gathers Patient-Reported Outcomes (PROs) in order to indicate the health status and the state of patient s physical, mental, and functioning well-being.

37 Research Use: Project HealthDesign Research teams demonstrated how to improve participants' health and well-being by helping them capture, understand, interpret, and act upon data about observations of daily living. 37

38 Challenges to PGHD Adoption TMI (too much info) & Provider Workflow Liability and Accountability Data Integrity and Standardization Privacy and Security Patient Expectations 38

39 Organizing, Advocating to Engage Communities of Color in Health IT

40 Cultivating a Diverse Health IT Workforce 40

41 Funding Opportunities Aetna Foundation Kaiser Permanente Institute for Health Policy The Office of the National Coordinator for Health : Information Technology (ONC) provides funding for demonstration projects. Robert Wood Johnson Foundation U.S. Department of Health and Human Services, Office of Minority Health 41

42 Demo: Smartphone Diabetes Self Monitoring App 42

43 Demo: Web portal for remote health monitoring Wsvgg_o 43

44 What s Next? Educate. Advocate. Adopt. 44

45 Questions and Answers 45

46 References Caraballo, Christina, Patient Generated Health Data: Addressing Concerns and Moving Forward, HIMSS News Blog, April 8, 2016, Consumer ehealth: Patient Generated Health Data, HealthIT.gov, DeSalvo, Karen B., Former National Coordinator for Health IT, and Garcia, J. Nadine, M.D. Deputy Assistant Secretary for Minority Health, Advancing Health Equity in the Digital Age, Health IT Buzz, April 18, Heath, Sara, 3 Benefits of Patient-Generated Health Data, Patient Engagement Patient Engagement IT, March 15, Lee, Sengyeon. E-Health Equality for All: Kaiser Permanente s efforts to identify and address digital health disparities, Kaiser Permanente Institute for Health Policy, December 9, 2015, Raymond, Brian, MPH. Digital Disparities: A Barrier to Health Equity Kaiser Permanente Institute for Health Policy, May 2, Shantanu Nundy, MD, Chen-Yuan E. Lu, BA, Patrick Hogan, BA, Anjuli Mishra, MS, and Monica E. Peek, MD, MPH, Using Patient-Generated Health Data From Mobile Technologies for Diabetes Self-Management Support, Journal of Diabetes Science and Technology Zero Divide, Abstract - Digital Health Equity: Humanizing ehealth, Zerodivide.org 46

47 Health IT Resource Organizations Consumer Partnership for ehealth Institute for ehealth Equity Healthcare Information and Management Systems Society (HIMSS) MedCity News Office of Minority Health (OMH), U.S. Department of Human Services Office of the National Coordinator for Health Information Technology (ONC) U.S. Department of Health and Human Services HIMSS. PatientEngagementHIT.com (published by Xtelligent Media) ZeroDivide. 47

48 Want to know more? Get in touch. The Ferneway Company Fairhill Road, Suite C241 Cleveland, Ohio p. Ferne A. Ziglar 48