How Giving Patients Their Data Can Lead to Patient Activation

Transcription

1 How Giving Patients Their Data Can Lead to Patient Activation February 29, 2016 Thomas A. Mason, M.D., Chief Medical Officer, ONC Lana Moriarty, Director, Consumer ehealth,

2 Conflict of Interest Thomas A. Mason, M.D., Chief Medical Officer, ONC Lana Moriarty, Director, Consumer ehealth, ONC Have no apparent conflicts of interest to report ONC Provider and Hospital Research 2

3 Health IT can make a difference 3

4 Consumer ehealth Mission and Strategy Mission: Empower individuals and their families with the information and technology they need to manage their health and partner in their care. ACCESS Access Culture Culture Change Contribute Access Contribute Share/Use Access - Increase Individuals Access to their Own Health Information Contribute - Enable Individuals to Contribute Important Information About Themselves Share/Use - Increase Individuals Use and Sharing of their Health Information Culture Change - Enable a Change Culture That Supports Person Centered Health and Care 4

5 Individuals need access to their full health records to address information gaps Source: 5

6 Individuals Can Serve as the Hub of Information Exchange Source: 6

7 Value of Online Access 7

8 Individuals are Engaging with their Health Records Online Sources: 8

9 Individuals are Engaging with their Health Records Online Source: 9

10 Increasingly More Patients Have Online Access Source: 10

11 Many Physicians Support Patients Updating their Health Records 11

12 More Online Access Leads to Better Care Patients' Online Access to Health Information Has a Very or Somewhat Positive Impact Across Key Domains, by Frequency of Access [Base = Accessed EHRs online (n=492): 1-2 times/year (n=187); 3+ times/year (n=305)] 100% 90% 80% 70% 60% 50% 40% 30% 20% 88% 63% 65% 85% 40% 75% 48% 71% 71% 39% 41% 68% 32% 59% Accessed 1-2 times/year Accessed 3+ times/year 10% 0% Knowledge of my health Ability to communicate with my main doctor/ other health care professionals Quality of care Ability to correct any errors in my medical record Desire to do something to improve my health Decision to stay with my physician Ability to share my medical and health information with family or other caregivers Source: 12

13 Why Consumer ehealth? Health IT empowers patients and caregivers to be: Agents of Change Communicating priorities, goals; taking action to meet goals Informed Decision Makers Selecting & coordinating w/ providers; seeking & using personalized information Sources of Verification & Contextual Information Identification & correction; patient-generated health data; preferences & values Integrators of Health into Daily Lives Self-management & support; improved access to health care system Source: 13

14 Do (real) people get it? Their 6-word memoirs Had cancer. Information helpful. Removed doubt. -Debbie G., Illinois Multiple medical memoirs muddle mature memories. -William H., Maryland Surgeon oncologist radiologist different forms. Argh!! -Martha M., Washington Arthritic hands can t fill out forms. -Paula B., New York Help me help you help me. -Eleanor B., Georgia Second opinions matter. Information prevents redoing. -Kathryn B., California Old ladies forget. Caregivers need access Sally R., Virginia Source: 14

15 GetMyHealthData - Goals Enable consumers to demand, receive and use their health data successfully. Change the culture of health care such that consumers are equal partners in care and active in co-creating the health care system. Source: 15

16 Tracers Tracers are individuals who want their health data in electronic format, and are willing to work with us to understand and document the process of requesting and receiving their data. What happened? What roadblocks did you face? What problems do we need to highlight and solve? We will use Tracer experiences to help more patients get their health data. The ask alone can change practice! Source: 16

17 What we are Learning: Record Requests can be Costly 17

18 What we are Learning: Format Matters I attempted to get my data from my primary care doc in an electronic file sent to my Direct address. After some discussion, the best they could offer was a CD it is a 47 page PDF of many things and of varying sizes and resolutions Incomplete at best. Nothing readable or computable in blue button or any other format. I have two binders and 8 discs. Swell. 18

19 What we are Learning: Culture of Resistance Offices seem puzzled [by patients asking for their data]. Practices in general have no capabilities with patients, and respond begrudgingly to requests. One Georgia health system tells patients they can get their records If they ask correctly. Medical providers treat my data as if it were top secret. I understand their concern about revealing my data to third parties, but many are reluctant to reveal it to me. Listen up! It s my body, my health. I have the right to all relevant medical information. How can I make informed decisions about my own health if I don t have information? 19

20 ONC PROVIDER RESEARCH FINDINGS 18

21 Based on feedback from providers and hospitals that some Meaningful Use requirements for patient access were unfair, we went into the field to find out more. 21

22 What did we do? Who did we speak to? A diverse group of providers and health care professionals Family Practice/Internal Medicine providers, part of groups or hospital systems Internal Medicine solo practitioner SVP and Chief Medical Officer at hospital systems CIO s or Directors of IT at hospital systems Office Managers Physician s Assistant CEO and Directors of hospital systems Research done in November

23 Provider Feedback Patient access is a relatively achievable goal, so the physicians and hospital personnel we spoke to desperately wanted to talk about the larger, systemic issues that prevent them from being able to use patient data in as meaningful way as they would like

24 Provider Feedback The good news.... Overall, providers and hospitals believe electronic health records and patient access to them will, ultimately, improve patient care and outcomes. 24

25 Positive Provider Feedback Providers, office staff and hospitals reported seeing some improvements to their work since moving to EMRs:» Electronic prescribing is a big time-saver» Electronic records make it easier to find things (as opposed to 6- inch paper file)» Some doctors love being able to communicate electronically, which is faster than phone tag 25

26 Positive Provider Feedback Providers, office staff and hospitals reported seeing some improvements to their work since moving to EMRs:» Some doctors appreciate the ability for patient tracking and risk calculators who should have a mammogram who hasn t?» Many like being able to access records from any location and multiple devices» Offices reported postage savings and often personnel savings since moving to electronic systems» Patients who are using their electronic records can catch mistakes and help make their record accurate 26

27 Positive Provider Feedback There is a reduction in phone calls. They take charge of their own health and are engaged and active. Anonymous office manager, small group practice Before EMRs we couldn t track mammograms and colonoscopies. We went from 5% to 90% knowing where people are at. - Dr. Pinho, PCP small group practice Filling prescriptions is a lot safer and easier. - Anonymous PCP in small group practice 27

28 Positive Provider Feedback It is definitely physician driven. I m very aggressive about making my patients sign up for the portal. I want them to have access to it also to be able to communicate with them with greater efficiency for me rather send them a message then play phone tag. - Dr. Fisch, Princeton HCS If I m at home I can have access, which is good. - Anonymous PCP in small group practice It is great to keep track of patients who need vaccinations. - Anonymous PCP in small group practice 28

29 Provider Feedback The Challenges Hurdles still exist to seamless use of patient information by both doctors and patients. 29

30 The Challenges Provider feedback focused on three large areas that hinder the ability to use patient data (and provide patient access) in a way that will improve patient care: 1. Interoperability and information flow 2. Rules and regulations 3. Patient awareness (to a lesser degree) 30

31 Three Main Barriers 1. Interoperability and information flow 2. Rules and regulations 3. Patient awareness 31

32 #1: Interoperability and info flow Provider Feedback Patients have too many portals If a patient sees 4 doctors a year and gets some imaging done, they may have 5 places to visit to get all their health records and 5 logins to remember Patient data isn t housed in one location They now have to have access to 5 portals to get to that information. - Anonymous PCP in small group practice As a patient I have to log into so many portals, having that many portals is a huge barrier. What I felt was the biggest problem was the fact that ONC and CMS didn t push more for HIEs to be the solution. That is the logical solution. Anonymous IT professional, Princeton HCS 32

33 #1: Interoperability and info flow Provider Feedback Doctors have systems overload Even within one hospital, there can be different systems. The radiology department uses one, the Emergency Room another, the hospital yet another and of course, their office s system is different Even within a hospital they don t communicate with each other. I know that a kid was admitted but it doesn t say why. I struggle to have access to that real time. - Dr. Pinho, PCP in small group practice All the repetitive logging in is unnecessary, all these clicks. All of them [EHRs] are like that. It is constantly logging me out. - Dr. Robison, Princeton HCS 33

34 Three Main Barriers 1. Interoperability and information flow 2. Rules and regulations 3. Patient awareness 34

35 #2 Rules and Regulations Provider Feedback Time to become compliant isn t always sufficient; attestation periods too long Forget the entire year, why isnt 90 days not enough? I mean if you are doing it for 90 days you are doing it. You re systems are in place, you are not going to stop. Anonymous PCP in small group practice 35

36 #2 Rules and Regulations Provider Feedback Regulations aren t on a scale Providers and hospitals are frustrated that they must meet 99% of the requirements or get $0 (or in the future get penalized) The other problem is the measures are all or none. If you do a good job and get 99% you haven t done it. That is especially bad for things out of our control! Anonymous PCP in small group practice November

37 Three Main Barriers 1. Interoperability and information flow 2. Rules and regulations 3. Patient awareness 37

38 #3: Patient Awareness Provider Feedback Many patients are unaware of the greater effort to provide citizens with access to their health information and some of the most common reasons they might want access request a referral or prescription refill, access to vaccine records and lab results, etc. We re doing it, but the acceptance of it has been minimal, and we have to really promote it. Dr. Robison, Princeton HCS 38

39 #3: Patient Awareness Provider Feedback Practices spend time and money getting patients signed up for portal access, but it is achievable compared to some of the larger interoperability and regulations challenges they face Once they get the entire office involved, they report getting people signed up isn t as challenging as larger, more systemic challenges around capturing and using patient data 39

40 Programs and Policies to Advance Patient Access The Federal Health IT Strategic Plan » Goal 1 - Advance person-centered and self managed health Connecting Health and Care for the Nation: Interoperability Roadmap v Edition Final Rule» Establishes a Common Clinical Data Set to encourage the exchange of a core set of data across the care continuum» Supports improved patient safety and outcomes» Facilitates data access and exchange through APIs Blue Button Connector optimizing for consumers to find their health data 40

41 Programs and Policies to Advance Patient Access Patient-generated Health Data policy framework for the successful implementation of PGHD in care delivery and research Health IT Policy Committee: API Task Force New HIPAA Access Guidance from OCR Provider & Consumer Tool Development Advancing Telehealth and Connected Health IT for Consumers 41

42 Ready, Set, TRACE! Volunteer to be a Tracer! Use the resources at GetMyHealthData.org your questions, problems, additional resource suggestions, etc. Complete the survey (we need more data!) Yes! I got my data No. I was unable to retrieve my data. (30-60 days) Tweet, write a blog post, share a six-word story, or volunteer to speak about your experience getting your health data Encourage your friends & family to get their health data! 42

43 The Blue Button Connector 43

44 Consumer Tools 44

45 Stay Connected, Communicate, and Collaborate Browse The ONC Website At: Healthit.Gov Click The Like Button To Add Us To Your Network Signup For Updates: Public.Govdelivery.Com/Accounts/USHHSONC/Subscriber/New? Visit The Health IT Dashboard: Dashboard.Healthit.Gov Request A Speaker At: Healthit.Gov/Requestspeaker Become a Tracer: erin@getmyhealthdata.org Subscribe, Watch, And HHSONC HHS Office of the National Coordinator Health IT and Electronic Health Record 45

46 Contact