Transcript Engaging Patients in Their Healthcare through Health Information

Engaging Patients in Their Healthcare
through Health Information:
Why it’s Important
Vera Rulon MS, RHIT, FAHIMA,
FACMImimi, Pfizer Inc
NYHIMA Conference 2014
Patient Empowerment: Key
Points
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Communication
Literacy
Personal
Practical
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In this session, attendees with
learn…
• That the use of digital tools and facilitating
communication between patients,
caregivers, and healthcare providers can
improve data quality and access to
healthcare (communication)
• How empowered patients and caregivers
can share decision making with their
healthcare providers through better health
literacy and input to their medical record
throughout the care continuum (literacy)
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In this session attendees will learn
(2)
• About personal stories of how patients
accessing and contributing to their medical
record improved (or could have improved)
the care they received (personal)
• Ideas to facilitate privacy/security,
access/literacy, and culture change by
healthcare providers and health
information management professionals of
patient/caregiver access and input to the
electronic medical record (practical)
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Communication
The use of digital tools and facilitating
communication between patients,
caregivers and healthcare providers can
improve data quality and access to
healthcare
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The use of digital technology has
revolutionized how we communicate
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Connected generation: Perspectives from tomorrow’s leaders
in a digital world
Insights from the 2012 IBM Global Student Study
“Social media will continue to grow, both on a personal and
organizational level. The Internet is now the new place
where business relationships are formed.” – United States
student, age 21
“We stand on the precipice of a paradigm shift into a fully
connected society. We must not be afraid to embrace
change. Those who can manage this will survive; those
who don’t will perish.” – United States student, age 30
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What does the data tell us?
• People are using digital and social media to
communicate more than ever before!
• Use of social media:
– In government
• Almost all government agencies use facebook,
twitter, You Tube, Flicker, and other social media
– In business
– In healthcare
• By consumers, healthcare practitioners
• And our communication preferences are
changing……
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Digital Revolution
• Manhattan Research Cybercitizen Health®
2012 study
Number of US adults (ages 18+) using digital
technology for health information:
61 million 2011
75 million 2012
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The mHealth market will continue to grow
Factors shaping the trend*:
• New technologies: smartphones, remote patient monitoring, social
media
–
cost and
acceptance
• Population age:
– global population aging
– median population age increasing
– chronic diseases
• Foundation in place: concept of “care everywhere” taking root
• Move to personalized care
“mHealth is not a separate industry, but rather it’s the future of a healchcare industry
that’s evolving to care for patients differently, putting them first to deliver services
better, faster, and less expensively.”
David Levy MD, PwC (from Analysis & Trends in mHealth)
*Guillemi, Andre; Benedict, Kevin mHealth Trends and Strategies 2013, May 2013 a special report by netcentric strategies
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Patient
Online Communities
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Health Literacy
Empowered patients and caregivers can
share decision making with their
healthcare providers through better
health literacy and input to their
medical record throughout the care
continuum
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The patient journey: care continuum,
literacy, and personal health
information
Patient
Patient
Engageme
nt/Awaren
ess
Health Care
Provider
Patient input to
the medical
record
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1
Presentation
& evaluation
Diagnosis
2
Consideration of
treatment
options
Adhering
to therapy
3
Treatment
decision
Clinical
knowledge
Symptoms,
Personal
preferences,
Family history
Shared decisionmaking w/provider
Patient/caregiver
research
4
Monitoring
therapy
Leverage
digital/mobile
communications,
share data
What is health literacy?
Health literacy is defined as the degree to which
individuals have the capacity to obtain, process and
understand basic health information needed to make
appropriate health decisions and services needed to
prevent or treat illness
per the US Dept. of Health and Human Services, Health Resources and
Services Administration
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How consumers seek out health information
“I don’t know, but I can try to find out” is the default
setting for people with health questions:
• 35% of U.S. adults say that at one time or another they
have gone online specifically to try to figure out what
medical condition they or someone else might have.
• One in five internet users have consulted online reviews
and rankings of health care service providers and
treatments.
• 18% of internet users, or 13% of adults, have gone online
to find others who might have health concerns similar to
theirs. People living with chronic and rare conditions are
significantly more likely to do this. See: Peer-to-peer
Healthcare.
Pew Research Internet Project “Health Fact Sheet” Dec 16, 2013
http://www.pewinternet.org/fact-sheets/health-fact-sheet/
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Diagnosis and consumer preference
Fox, Susannah & Duggan, Maeve “Health Online 2013” retrieved March 14,
2014 http://www.pewinternet.org/2013/01/15/health-online-2013/
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What is Shared Decision Making?
An integrative process between a
patient and clinician that:
• Engages the patient in decisionmaking;
• Provides the patient with
information about all treatment
options; and
• Facilitates the incorporation of
patient preferences and values into
the medical/treatment plan
Charles CA, Gafni A, Whelan E. Shared Decision-Making in the Medical Encounter: What Does It
Mean?17(Or, It Takes at Least Two to Tango). Social Science and Medicine, 1997; 681-692
Empowering Providers and Patients
Ask Me 3 is a patient education program designed to improve
communication between patients and health care providers,
encourage patients to become active members of their health
care team, and promote improved health outcomes.
The program encourages patients to ask their health care
providers three questions:
• What is my main problem?
• What do I need to do?
• Why is it important for me to do this?
Studies show that people who understand health instructions
make fewer mistakes when they take their medicine or prepare
for a medical procedure. They may also get well sooner or be able
to better manage a chronic health condition.
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Other literacy tools:
• AHRQ’s Questions to Ask Your Doctor
• AHIP’s Choosing Wisely Doctor - Patient Lists
• AARP’s Medication Toolkit Ask the Right
Questions and Get The Most From Your
Medicines
• Informed Medical Decisions Foundation
Shared Decision Making Resources
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Patient access to their records
A research study identified four themes that characterized patient
experiences with reading the full complement of their health information
1. Patients felt that seeing their records positively affected
communication with providers and the health system
2. Enhanced knowledge of their health
3. Improved self-care
4. Allowed for greater participation in the quality of their care such as
follow-up of abnormal test results or decision-making on when to
seek care
While some patients felt that seeing previously undisclosed information,
derogatory language, or inconsistencies in their notes caused challenges,
they overwhelmingly felt that having more, rather than less, of their
health record information provided benefits.
Woods SS, Schwartz E, Tuepker A, Press NA, Nazi KM, Turvey CL, Nichol W.P Patient Experiences With Full
Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot:
Qualitative Study J Med Internet Res 2013;15(3):e65 URL: http://www.jmir.org/2013/3/e65/
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Inviting Patients to Read Their Doctors’ Notes:
A Quasi-experimental Study and Look Ahead
Key Findings: Post intervention survey
• 77% - 87% of patients reported that open notes helped them feel
more in control of their care
• Of those patients taking medications 60 % – 78% reported
increased medication adherence
Physicians
• Few reported longer visits (0%-5%)
• 3% - 36% reported changing documentation content or taking
longer to write notes (0%-21%)
At the end of the experimental period
• 99% of patients wanted open notes to continue
• No doctor elected to stop
Delbanco, Tom MD; Walker, Jan RN, MBA; et. al. Inviting Patients to Read Their Doctors’ Notes, Annals of Internal Medicine,
American College of Physicians retrieved 8/6/2013 from http://annals.org/article.aspx?articleid=1363511
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Wuerdeman, Volk et. al. “How Accurate is Information that Patients Contribute to their
Electronic Health Record?” AMIA 2005 Symposium Proceedings p 834 - 838
Key Points
– The longitudinal medical record (LMR) is often incomplete
– Patient reported data is a promising source of general health information
– Patients can provide valuable information on: Presence or absence of tests
(supports preventative medicine); Surveys on quality of life
“Patients have important knowledge of their basic health maintenance, and can and
should assist physicians in recording information.
Patient access will increase the quality of this data to help ensure that the physician has
the most comprehensive file possible with which to work.
In addition to quality assurance, patient provided data and patient access to LMR data
will help increase communication between provider and patient.”
Depression
Screening
On LMR Problem
list
Not in LMR
Total Participants
High Risk
4 (25%)
12 (75%)
16 (100%)
Moderate Risk
7 (27%)
19 (73%)
26 (100%)
Low Risk
20 (9%)
192 (91%)
212 (100%)
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223
254
Total
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General Well-being Motivates Health Self-Tracking
50% of consumers track or monitor
their health, wellness, or fitness
measurements
Pebble watch
fitbit
Nike+
FuelBand
Among those who are online, Young & health- Age 18-34, in good or excellent overall health and has not been personally
diagnosed with a condition. Old & Sick- Age35+, in fair or poor overall health and has been personally diagnosed with a condition
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Source: Manhattan Research, Cybercitizen Health® U.S. 2013, fitbit, Pebble watch, Nike
General Well-being Motivates Health Self-Tracking
Reasons for tracking health
measurements:
Among those who are online, Young & health- Age 18-34, in good or excellent overall health and has not been personally
diagnosed with a condition. Old & Sick- Age35+, in fair or poor overall health and has been personally diagnosed with a condition
Source: Manhattan Research, Cybercitizen Health® U.S. 2013, fitbit, Pebble watch, Nike
Personal
Personal stories of how patients contributing to
their medical record improved (or could have
improved) the care they received because of
the improved quality of their personal health
information
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Managing My Personal Health Record: My
Story of Living with Lupus
Tracy H. Okubo, ONC State
HIE Program Analyst
Medical records from birth to
age 15 lost
Leveraged an online personal
health record to take charge
of personal health
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http://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/managing-personal-health-record-story-living-lupus/
An unhappy family surprise on
Thanksgiving: a family member gets sick
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Dr. Farzad Mostashari’s father
Eye pain post cataract surgery
Doctor’s office closed
Medicare’s Blue Button
Smart phone - Humetrix iBlueButton app
Cause of pain within the medical record!
Stawicki, Elizabeth “Your Smartphone Might Hold Key to Your Medical Records” Kaiser Health
News retrieved March 17 from
http://www.kaiserhealthnews.org/stories/2013/june/17/electronic-health-records-blue-button.aspx
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Patient Participation: Let Patients Help With Medical
Record Quality, Completeness*
by "e-Patient Dave" deBronkart
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When my mother was discharged to rehab two years ago, her hypothyroid
came across to the new system as hyper. The best clinician in the world,
reading that information, would have correctly caused a disaster.
When one of my relatives was hospitalized, I asked to see the chart and was
told that wouldn't be allowed until after discharge. Brilliant: "We'll operate
using our potentially wrong data, and you can point out the mistake later."
Seriously??
Marge Benham-Hutchins, an RN and PhD, tracked her husband's data from
home through the patient portal until he became an inpatient, at which
time she was locked out of the same data!
A long-time friend was caring for his wife during a month-long
hospitalization. Familiar with my work in this area, time after time, he asked
to see the chart to check for mistakes or omissions that could cause errors
that could be easily prevented; time after time, he was told no. (I hear
providers say, "Patients can't understand this stuff," but this guy is a PhD
medical research scientist.)
*retrieved March 17 2014 from http://www.ihealthbeat.org/perspectives/2013/patient-participation-in-themedical-record-let-patients-help-with-quality-completeness
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“Give Us Our Damned Data”
• Regina Holliday, patient advocate
• 73 cents
• Walking Gallery
Artist Regina Holliday gives Jen McCabe a jacket that reads "In
emergency break glass ceiling. Demand access to your medical
record."
Cohen, Elizabeth Patients Demand: Give us Our Damned Data CNN Health retrieved March 17th
2014 from http://www.cnn.com/2010/HEALTH/01/14/medical.records/
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Practical Application
Ideas to facilitate privacy/security,
access/literacy, and culture change by
healthcare providers and health
information management professionals
of patient/caregiver access and input to
the electronic medical record (practical
application)
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Practical, Secure, Participatory
• Privacy/Security
• Access and literacy
• Culture change
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Privacy/Security: Perceptions are Important*
• Individuals who strongly disagree that health care providers have
reasonable protections in place for EHRs are over 8 times more
likely to have withheld information from their provider compared
to those who strongly agree (33% vs. 4%) (Figure 4).
• Compared to the overall population, individuals who strongly
disagree that health care providers have reasonable protections in
place for EHRs are almost 5 times more likely to have withheld
information from their provider (33% vs. 7%).
*Hughes, Penelope JD MPH, Patel, Vaishali PhD MPH, Pritts, Joy JD Health care providers’ role in protecting
EHRs: Implications for consumer support of EHRs, HIE and patient-provider communication ONC Data Brief ■
32 ■ February 2014 http://www.healthit.gov/sites/default/files/022414_hit_attitudesaboutprivacydatabrief.pdf
No. 15
Patient Communities:
PatientsLikeMe Launches “Data for Good” Campaign to
Encourage Health Data Sharing to Advance Medicine
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“Sharing helps me track important health information and improve
research about this disease. If I am willing to be transparent, hopefully
others will be inspired to do the same” multiple sclerosis patient
More than 250,000 members are donating their disease data to research on
PatientsLikeMe.
To date, more than 21 million structured data points contributed by
patients about their disease experiences including:
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treatment and symptom reports,
demographic information,
health outcome surveys,
lab data and more.
In a recent study focused on sleep issues, PatientsLikeMe was able to pull
more than 5-years worth of data to analyze from its platform – including
over 184,000 symptom reports previously shared by 65,000 chronically ill
patients. The company then ran an additional survey to collect more data
and received 5,000+ responses in less than two weeks.
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Access and Literacy
• Leverage social media and patient
participation
• Patient communities and focus groups
• Engage patients in the PHR
• What about smart phones?
• Patient <-> provider communications
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Culture Change: Physicians need to adapt
• Dialogue
– “If you don’t mind, I am going to be typing
as you speak, I’m happy to show you what
I’m writing”
– “I’m going to look up your test results,
would you like to look at them together?”
• Caution
– Documenting socially stigmatizing health
conditions
– Sensitivity to patient perceptions
• Patient engagement
– Improving management of chronic disease,
mental illness
– Patient-physician collaboration
White, Amina MD; Danis, Marion MD Enhancing Patient-Centered Communication and Collaboration by Using
the Electronic Health Record in the Examination Room JAMA, June 12, 2013 – Vol 309, No. 22
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Themes
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Culture dominates
“Listen first, listen fully”
Patient engagement is a skill, not a trait
Trust matters
Prepared, engaged patients are a fundamental
precursor to high quality care, lower costs, and
better health
Institute of Medicine (IOM), Partnering with Patients to Drive Shared decisions, Better Value and Care Improvement,
meeting summary retrieved August 16, 2013 from
http://iom.edu/Reports/2013/~/media/Files/Report%20Files/2013/Partnering-with-Patients/PwP_meetingsummary.pdf
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Questions?
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Engaging Patients in Their Healthcare
through Health Information:
Why it’s Important
Vera Rulon MS, RHIT, FAHIMA,
FACMImimi, Pfizer Inc
NYHIMA Conference 2014