how giving patients their data can lead to patient activation
DESCRIPTION
Thomas A. Mason, M.D., Chief Medical Officer, ONC Lana Moriarty, Director, Consumer eHealth, ONC, @LMoriarty1TRANSCRIPT
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, ONC, @LMoriarty1
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
Health IT can make a difference
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https://www.youtube.com/watch?v=23rbI1PFkLA
Access
Consumer eHealth Mission and Strategy
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
ACCESS Contribute
Share/Use Culture
Mission: Empower individuals and their families with the information and technology they need to manage their health and partner in their care.
4
Contribute
Share/Use
Culture Change
Access
Individuals need access to their full health records
to address information gaps
5 Source: http://www.nejm.org/doi/pdf/10.1056/NEJMsa063979
Individuals Can Serve as the Hub of Information Exchange
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Source: http://www.nejm.org/doi/pdf/10.1056/NEJMsa063979
Value of Online Access
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Individuals are Engaging with their Health Records Online
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Sources: http://www.nejm.org/doi/pdf/10.1056/NEJMsa063979 http://www.nationalpartnership.org/research-library/health-care/HIT/engaging-patients-and-families.pdf
Individuals are Engaging with their Health Records Online
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Source: http://www.nejm.org/doi/pdf/10.1056/NEJMsa063979
Increasingly More Patients Have Online Access
Source: https://www.healthit.gov/sites/default/files/briefs/oncdatabrief29_patientengagement.pdf
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Many Physicians Support Patients Updating their Health Records
http://newsroom.accenture.com/news/most-us-doctors-believe-patients-should-update-electronic-health-record-but-not-have-full-access-to-it-according-to-accenture-eight-country-survey.htm
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More Online Access Leads to Better Care
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63% 65%
40%
48%
39% 41%
32%
88% 85%
75% 71% 71%
68%
59%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
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
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)]
Accessed 1-2 times/year
Accessed 3+ times/year
Source: www.NationalPartnership.org/PatientsSpeak
Why Consumer eHealth?
Health IT empowers patients and caregivers to be:
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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: www.getmyhealthdata.org
Do (real) people get it? Their 6-word memoirs
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Help me help you help me. -Eleanor B., Georgia
Multiple medical memoirs muddle mature memories.
-William H., Maryland
Surgeon oncologist radiologist different forms. Argh!! -Martha M., Washington
Had cancer. Information helpful. Removed doubt.
-Debbie G., Illinois
Arthritic hands can’t fill out forms.
-Paula B., New York Old ladies forget. Caregivers
need access Sally R., Virginia
Second opinions matter. Information prevents redoing. -Kathryn B., California
Source: www.getmyhealthdata.org
Source: www.getmyhealthdata.org 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.
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: www.getmyhealthdata.org 16
What we are Learning: Record Requests can be Costly
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What we are Learning: Format Matters
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“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.”
What we are Learning: Culture of Resistance
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“Offices seem puzzled [by patients asking for their data]. Practices in
general have no email 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?”
ONC PROVIDER RESEARCH FINDINGS
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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.
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What did we do?
Who did we speak to?
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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 2015.
Provider Feedback
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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. . . .
Provider Feedback
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The good news. . . .
Overall, providers and hospitals believe electronic health records and patient
access to them will, ultimately, improve patient care and outcomes.
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
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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
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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
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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
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Provider Feedback
Hurdles still exist to seamless use
of patient information by both
doctors and patients.
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The Challenges…
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)
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Three Main Barriers
1. Interoperability and information flow
2. Rules and regulations
3. Patient awareness
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• 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
#1: Interoperability and info flow – Provider Feedback
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• 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
#1: Interoperability and info flow – Provider Feedback
Three Main Barriers
1. Interoperability and information flow
2. Rules and regulations
3. Patient awareness
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#2 Rules and Regulations – Provider Feedback
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• 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
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• 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 2015
#2 Rules and Regulations – Provider Feedback
Three Main Barriers
1. Interoperability and information flow
2. Rules and regulations
3. Patient awareness
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#3: Patient Awareness – Provider Feedback
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• 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
#3: Patient Awareness – Provider Feedback
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• 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
Programs and Policies to Advance Patient Access
• The Federal Health IT Strategic Plan 2015-2020
» Goal 1 - Advance person-centered and self managed health
• Connecting Health and Care for the Nation: Interoperability Roadmap v 1.0
• 2015 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
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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
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Ready, Set, TRACE!
Volunteer to be a Tracer!
Use the resources at GetMyHealthData.org
Email 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!
The Blue Button Connector
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http://bluebuttonconnector.healthIT.gov
Consumer Tools
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Stay Connected, Communicate, and Collaborate
Browse The ONC Website At: Healthit.Gov
Click The “Like” Button To Add Us To Your Network
Signup For Email 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: www.getmyhealthdata.org
@ONC_HealthIT
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HHS Office of the National Coordinator
Health IT and Electronic Health Record
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