transparency in healthcare, one note at a time · 2019-06-24 · 6/24/2019 1 transparency in...
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Transparency in Healthcare,
One Note at a Time
Liz Salmi, Tammy Flint,
and Chethan Sarabu, MD
OpenNotes is a national movement, based on
research, dedicated to making healthcare more
open and transparent by giving patients access
to their medical providers’ notes via their secure,
online patient portals.
Not a vendor product or software.
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50 states
200+ health systems
40,000,000 patients
opennotes.org/map
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Region 9• Arizona – 5
• California – 25– Clinica Romero
– LA County Health Services
– OpenDoor Community Health Centers
– Monterey County Health Department
• Hawai’i – 2
• Nevada – 3
Learning objectives1. Define the OpenNotes movement and discuss
original research of the same name.
2. Identify common concerns clinicians may have about sharing clinical notes with patients.
3. Recognize how patients and care partners benefit by having access to their clinical notes.
4. Give examples of how OpenNotes has been used in community health settings and how vulnerable patient populations benefit from having access to their clinical notes.
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2008
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Salmi, L. Medical record. (2010)
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2017
$725.85
Salmi, L. Office visit. Kaiser Medical Secretaries. (23 Feb 2017)
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4,839-pages
Salmi, L. Medical record. (16 Dec 2016)
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Salmi, L. Medical record. (16 Jan 2009)
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Doctors and patients on
the same page
Evidence base is growing
90+ peer-reviewed publications
30% not authored by OpenNotes team
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Original study: 2010• Research and demonstration project
• 105 primary care providers and
20,000 patients:
– Boston (BIDMC)
– Rural Pennsylvania (Geisinger)
– Seattle safety net hospital
(Harborview)
• Now replicated at numerous sites
around the country
Delbanco, Walker, et al, Annals of Internal Medicine
Results for patients
80% read a note initially, 50-60% long term
75% reported benefits (replicated multiple times) in Engagement, Adherence, Planning, Control,
Understanding
99% wanted to continue (replicated multiple times)
85% would use OpenNotes as a criterion for
selecting providers
Delbanco, Walker, et al, Annals of Internal Medicine
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Doctor-patient relationship
99% of patients felt better (37%) or the same (62%) after reading at least one note
7% of patients reported concerns to doctors about
something in the note
• 29% reported a perceived error
• 85% satisfied with resolution
Doctors believed shared notes increased patient
satisfaction (50+%)
No doctors reported ordering more tests or referrals
Bell SK, Gerard M, Fossa A, et al A patient feedback reporting tool for OpenNotes:
implications for patient-clinician safety and quality partnerships. BMJ Qual Saf
Published Online First: 13 December 2016. doi: 10.1136/bmjqs-2016-006020
Patients who read notes
feel more engaged in their care
Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, et al. Inviting Patients to Read Their Doctors' Notes: A Quasi-
experimental Study and a Look Ahead. Ann Intern Med. ;157:461–470. doi: 10.7326/0003-4819-157-7-201210020-00002
Bell SK, Folcarelli P; Fossa A, et.al. Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and
Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes. Journal of Patient Safety:
April 27, 2018. doi: 10.1097/PTS.0000000000000494
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Reading notes can
improve adherence to
medications
DesRoches CM, Bell SK, Dong Z, Elmore J, Fernandez L, Fitzgerald P, et al. Patients Managing Medications and Reading Their Visit
Notes: A Survey of OpenNotes Participants. Ann Intern Med. [Epub ahead of print 28 May 2019] doi: 10.7326/M18-3197
Care partners• 88% of patients and 86% of caregivers had better formulated
questions for the doctor
• 86% of patients and 82% of caregivers had more productive
discussions about the patient’s care
• 94% of patients and their caregivers said they had a better
understanding of patient health conditions, better
remembered the patient’s care plan, and felt more in control
of care
• 71% of both patient and caregivers reported patients taking
medications as prescribed more often
Wolff, et al. JAMIA
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After reading notes,
vulnerable populations
more likely to report
increased trust in doctorsWalker J, Leveille S, Bell S, Chimowitz H, Dong Z, Elmore JG, Fernandez L, Fossa A, Gerard M, Fitzgerald P, Harcourt K, Jackson
S, Payne TH, Perez J, Shucard H, Stametz R, DesRoches C, Delbanco T. OpenNotes After 7 Years: Patient Experiences With
Ongoing Access to Their Clinicians’ Outpatient Visit Notes. J Med Internet Res 2019;21(5):e13876. DOI: 10.2196/13876
Gerard M., Chimowitz H., Fossa A., Bourgeois F., Fernandez L., Bell SK. The Importance of Visit Notes on Patient Portals for
Engaging Less Educated or Nonwhite Patients: Survey Study. J Med Internet Res 2018;20(5):e191. doi: 10.2196/jmir.9196
Worry: Vulnerable patients will
lose trust because of confusion.
Evidence: Opposite is true.
Gerard M., Chimowitz H., Fossa A., Bourgeois F., Fernandez L., Bell SK. The Importance of Visit Notes on Patient Portals for Engaging Less
Educated or Nonwhite Patients: Survey Study. J Med Internet Res 2018;20(5):e191. doi: 10.2196/jmir.9196
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Worry: Note-reading will only be
helpful for highly educated patients.
Evidence: Patients with lower levels
of formal education are consistently
more likely to report benefits.
Jackson SL, DesRoches CM, Frosch DL, Peacock S, Ostera NV, Elmore JG. Will use of patient portals help to educate and
communicate with patients with diabetes? Patient Education and Counseling, 101 (2018) 956–959.
7 years later… Surveyed all 3 original OpenNotes
sites
≈ 30k responses / ≈ 20k read at least
one note in the last year
Majority say “note reading” is very
important
Very few are confused by notes
Some report being encouraged by
clinicians to read notes
Walker J, et al. OpenNotes After 7 Years: Patient Experiences With
Ongoing Access to Their Clinicians’ Outpatient Visit Notes. J Med
Internet Res 2019;21(5):e13876. DOI: 10.2196/13876
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7 years later… (cont.)
Some tell clinicians they are reading notes
Nearly all think online access to visit notes is a good idea
More than half rate OpenNotes as very important for choosing a future provider
Walker J, et al. OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their
Clinicians’ Outpatient Visit Notes. J Med Internet Res 2019;21(5):e13876. DOI: 10.2196/13876
99% of people
are likely to feel the same
or better about their doctor
after reading just one note
Bell SK, Gerard M, Fossa A, et al A patient feedback reporting tool for OpenNotes: implications for patient-
clinician safety and quality partnerships. BMJ Qual Saf Published Online First: 13 December 2016.
doi: 10.1136/bmjqs-2016-006020
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99% of people
want continued access
to notes
Bell SK, Gerard M, Fossa A, et al A patient feedback reporting tool for OpenNotes: implications for patient-
clinician safety and quality partnerships. BMJ Qual Saf Published Online First: 13 December 2016.
doi: 10.1136/bmjqs-2016-006020
Who is sharing
doctor’s notes?
What about
those most likely
to benefit?
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“Weeks after my visit, I thought,
Wasn't I supposed to look into
something? I went online immediately.
Good thing! It was a precancerous
skin lesion my doctor wanted removed
(I did).”-- patient
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“In his notes, the doctor called me mildly
obese. This prompted immediate
enrollment in Weight Watchers and daily
exercise. I’m determined to reverse that
comment by my next check-up.”-- patient
“It really is much easier to show my
family who are also my caregivers the
information in the notes than to try and
explain myself.”-- patient
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“Sometimes I forget what is said to me
because it is emotional and it is so nice
to be able to go back and read exactly
what my doctor was telling me.” -- patient
“Notes answer questions…
and remind me of the care plan”
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Why does OpenNotes
matter?
Transparency = trust
Information Equity?
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2006
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Feinberg, David. “The Future of Healthcare” at SXSW. 8 Mar. 2019.
70,000 health-related
searches every minute-- David Feinberg, MD, MBA, Google Health
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My actual doctor
Transparency is
logical and ethical
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Opened First Clinic in 1971 in Arcata,CA
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Today
• 7 City Locations
• 13 Sites
• 4 Mobile Vans
• Covering 285 miles between 2 counties
• Serving about 36% of our population with 265,000 visits a year
Implemented 2008
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Implemented the Patient Portal in 2010
Find the Champion(s)
Herrmann Spetzler Willard Hunter, MD
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CEO Directive
• Directive from CEO to Share all Medical Providers Notes – Defaulted to share• Allowed some to abstain from Sharing
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The Concerns
• Children and Adolescent notes• Patient Complaints• More Messages for Clarification• Agreement of Diagnosis• How the information is being interpreted
Channels of Feedback
• Directed to our CMO• Discussed at meetings• Request to OPT out were reviewed on a case by case basis
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Ochin Programming Changes
• 2017• Opt Out Defaults were implemented at the provider level
• 2019• All Office visits are defaulted to Share• Providers, need to manually opt out of each note• Enabled for all ages• All Depts, including Dental and Behavioral Health
• ODCHC is NOT enabled from Behavioral Health, at this time
SILENCE
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Open Door
• 36% of our patient Population is active on MyChart (20,858 pts)
• 88% of our notes are shared daily
• 2% of our notes are actually read daily
OCHIN Collaborative
• 85% of Ochin Clients are sharing notes (115 Sites)
• Of those, 57% are sharing Mental Health Notes
• Of the 4 million patients with OCHIN, 270,000 are using the portal, 6.75%
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Financial Impact
Ochin EPIC realizes this is just good patient care and has made this a part of their standard EMR product. There has not been any financial impact on Open Door for any integration costs
Tammy FlintService Area Administrator
Open Door Community Health Centers707-826-8633 x 5133
Contact
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Transparency in Healthcare, One Note at a Time
Chethan Sarabu MD – Clinical Instructor in Pediatrics
Stanford Medicine
Monday June 24th, 2019
Clinical Excellence Conference
Disclosure
Chethan Sarabu also works as the Director of Clinical Informatics at doc.ai
The following presentation has no relation to the work at doc.ai and is solely
related to work at Stanford Medicine and Stanford Children’s Health.
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Multiple Hats
Expanding
OpenNotes at
Stanford Children’sPrimary Care Pediatrician at a
Community Clinic that is a
Federally Qualified Health Center
Part of a Pediatric Advocacy
Coalition to address many Social
Determinants of Health OpenNotes: Toward a Participatory Pediatric Health SystemChethan Sarabu, Natalie Pageler, Fabienne BourgeoisPediatrics Oct 2018, 142 (4) e20180601; DOI: 10.1542/peds.2018-0601
Gardner Packard Clinic
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1. OpenNotes at
Stanford Children’s
69
Approach
• While a system wide rollout is the best approach for patients, it is important to balance this cultural change with the tension that many front-line clinicians face, especially driven by EHR changes.
• Although OpenNotes literature has shown most physician fears to be unfounded, the lack of pediatric literature was concerning to many.
• We took an approach where any clinician had the ability to opt-in to share notes but to make the notes shared by default we have taken a department by department approach
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What are Open Notes?
• Open Notes are outpatient visit notes that patients can access through MyChart.
• Pediatric Neurology, Neurosurgery, Transplant Nephrology, Development & Behavior, General Surgery,
ENT, Complex Care Clinic, Endocrinology, Nephrology, Rheumatology, Orthopedic Surgery,
Ophthalmology, and REI are currently live with OpenNotes (sharing notes by default)
• Research has shown that Open Notes help patients manage chronic illness, make care safer, and can
lead to a strong patient-physician relationship all while not increasing the workload for physicians.
• We are in the process of expanding Open Notes throughout the rest of Stanford Children’s Health.
How do Open Notes work?
Clinician Signs Note
Patient/Parent logs into MyChart to view Note
Important Things to Know
• Providers can block a note from being shared by unchecking the button
at the top of the notes activity. (see full screenshot below)
• Confidential notes are not shared
• Notes are currently not available for 12-17 year old patients and their parents to preserve confidentiality
Best Practices for Open Notes • Engage patients and seek feedback. Talk about your notes, encourage patients to review them, and
ask if they understood the notes. Investing in this engagement can strengthen the patient’s
understanding and the patient-provider relationship.
• Discuss what you will document – and document what you discuss. Patients state they don’t want to be
surprised, so discuss what you will and will not document with the patient.
• Document objectively. Use non-judgmental descriptive terms (Example: ‘Patient unable to recall the
details of medical history” rather than.’) ‘Patient is a poor historian."
• Write clear notes using language that represents your clinical care.
• Review your documentation templates to minimize potentially inaccurate documentation. For example,
remove ‘14-point ROS is negative’ if this is not your usual practice.
• See additional recommendations in the literature: Your Patient Is Now Reading Your Note:
Opportunities, Problems, and Prospects. Klein, Jared W. et al. The American Journal of Medicine,
Volume 129 , Issue 10 , 1018 – 1021 (attached)
Questions or concerns? Please contact: Chethan Sarabu, MD
Clinical Informatics Fellow
Pediatrician
Open Notes at Stanford Children’s Health (6/18)
One page guide shared with departments considering sharing notes by default
Patient facing flyers inviting families to OpenNotes
stanfordchildrens.org
Read your clinical visit notes in MyChart We are proud to announce that we offer OpenNotes on MyChart to ensure that you do not
miss any important details from your appointment. Through OpenNotes, your signed
provider’s note will be available to you anytime from your computer.
Access your notes by logging into your MyChart account and checking your past
appointment summary.
Don’t yet have a MyChart account?
Check out mychart.stanfordchildrens.org and activate your account the next time you visit a
Stanford Children’s Health clinic.
How do I benefit from OpenNotes? • Ensure that you are always on the same page with your Stanford Children’s Health care team.
• Revisit and remember the details of your appointments
• Remind yourself on how to properly administer medication
• Review next steps and what to look into
• Securely share notes with family members and other caregivers
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Clinician Concerns
Our primary concern is notes being sent automatically to families as many times our notes can be so intricate and complicated that it causes more harm to the families as it is not written in layman’s terms.
Unfortunately OpenNotes puts my service at risk for opening the flood gates to additional MyChart communications.
However, we realize the benefits as you have outlined, but felt that our notes are often medically complicated and would not meet many of the guidelines
2. Findings from
OpenNotes Surveys
74
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Replicating Adult Survey in Pediatrics
Patient Perceptions of OpenNotes
OpenNotes
Experience
at Stanford
Children’s
n = 314 / 5 months
OpenNotes
Experience in
Adults (from
2015 BMJ
paper)
n = 4,592 / 12
months
*
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58%
55%
48%
45%
41%
38%
29%
2%
76%
72%
21%
34%
34%
44%
35%
4%
To know about my child's health
To be sure I understood what the doctor said
I was curious
To know what the doctor was thinking
I have a right to see my child's record
To remember the visit
To check that the notes were right
No particular reason
What are your reasons for reading a visit note? (select all that apply)
Adult - BMJ 2016 (N=4,592) Pediatics - Stanford Children's (N=187)
70%
25%
3%
1%
2%
50%
29%
9%
1%
12%
Always
Usually
Sometimes
Never
Do not know
How often did the notes accuratey describe the visit?
Adult - BMJ 2016 (N=4,592) Pediatics - Stanford Children's (N=188)*
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74%
23%
2%
1%
1%
60%
29%
4%
1%
7%
Very Easy
Somewhat easy
Somewhat difficult
Very difficult
Do not know
How easy was it to understand your/your child's notes?
Adult - BMJ 2016 (N=4,592) Pediatics - Stanford Children's (N=188)
20%
17%
62%
1%
1%
38%
16%
44%
2%
1%
Much Better
Somewhat better
Do not feel better or worse
Somewhat worse
Much Worse
Did reading the note change the way you feel about your/your child's doctor?
Adult - BMJ 2016 (N=4,592) Pediatics - Stanford Children's (N=187)
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7%
89%
3%
1%
16%
70%
7%
7%
Yes
No
Considered but did not
Do not know/Do not remember
Did you ever contact your/your child's doctor's office about something you read in your child's notes?
Adult - BMJ 2016 (N=4,592) Pediatics - Stanford Children's (N=187)
88%
12%
Yes
No
Does OpenNotes help you better understand the other information in MyChart such as lab test results?
(N=187)
*
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“The doctor gave somewhat of a conflicting opinion from my child's previous doctor on the East Coast (we recently relocated). Seeing the Clinic Notes as part of the After Visit summary though MyChart was very helpful to understand why he thought the care plan would be different moving forward.”
“Open Notes are AMAZING!! I wish all my son's specialists did this. It has allowed his primary care physician to understand his case better, allowed me to print out neurology reports for his school for IEP testing purposes, and to refer back to our previous care decisions (which change often with a medically complicated child). Honestly, my son's disorder is so rare and complicated we are often the experts educating other doctors. And so having access to everything makes it far easier for me to provide the full context to each new physician we meet (and there are a lot of them). I really wish that more doctors used these OpenNotes.”
3. Challenges &
Opportunities Ahead
84
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Challenge:
Issues brought up when discussing
OpenNotes for Community Clinic
• There is currently no patient portal enabled
• For many patients, English is not their first language
• Might be switching electronic health records
Opportunity:
OpenNotes is about relationship building,
beneficial for both patients and clinicians
• Advocate for sharing notes in any means possible
• Need to speak to multiple stakeholders
• Culture shift can take time but it is absolutely
worth it
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Chethan Sarabu, MD
twitter: @chethanr
Happy to help…
Learning
opportunities
Open access toolkits
Presentations
Videos
OpenNotes.org
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Thank YouOpenNotes.org
@myopennotes
@TheLizArmy
Tammy [email protected]
Chethan Sarabu, [email protected]
@chethanr
What the doctor writes What the patient seesvs.
Salmi, L. Medical record. (28 Nov. 2017)