(1) A study gave patients access to their doctors' visit notes through online portals to examine the impact of "open notes". (2) Over 80% of patients read their notes, reporting benefits like better care, understanding, and control of their health. (3) Doctors were initially concerned about increased workload but saw little real impact. (4) After one year, both patients and doctors overwhelmingly wanted to continue open notes access.

1. July, 2015 - Pennyhill Park, England
Improving the Quality of and Efficiency of Health
Commonwealth Fund-Nuffield Trust
Using Health Information Technology to Maximize Patient Engagement:
Early experience with fully transparent medical records in the USA
Tom Delbanco, MD, MACP,
Koplow–Tullis Professor of Medicine, Harvard Medical School
Beth Israel Deaconess Medical Center

2. What are open notes?
Open notes are
visit notes that patients can access online
through patient Internet portals.
www.myopennotes.org
2

3. 1-year Demonstration Project summer 2010 – summer 2011
(and still ongoing)
 Patients invited to view their primary care doctors’ signed notes
via secure portals (only notes signed during the project – not
retroactive)
 Each patient notified automatically via secure e-mail message
when a note was signed, and later reminded to review note(s)
before next visit
Patients and doctors completed surveys before and after, and we
collected administrative data (portal clicks, e-mail volume)
Primarily funded by the Robert Wood Johnson Foundation
About the OpenNotes Study
3

4. Three Principal Questions
 Would OpenNotes help patients become
more engaged in their care?
 Would OpenNotes be the straw that breaks
the doctor’s back?
 After 1 year, would patients and doctors
want to continue?
About the OpenNotes Study
4

5. 108 volunteer PCPs and more than 19,000 of their patients
who use portals:
• BIDMC (urban and suburban Boston)
39 PCPs & 10,300 patients
• Geisinger Health System (rural Pennsylvania)
24 PCPs & 8,700 patients
• Harborview Medical Center (inner city Seattle)
45 PCPs & 270 patients (new portal)
About the OpenNotes Study
Diverse Sites
5

6. About the OpenNotes Study
Patients’ Experience

7.  82% of patients opened at least one of their notes…and they
continue to read them
 Including patients who were older, sicker, less educated
 Few patients said reading notes made them feel
 Worried (5-8%)
 Confused (2-8%)
 Offended (1-2%)
 20-42% of patients reported sharing notes with others
Among Patients with Notes (Visits)
About the OpenNotes Study
7

8. About 3 out of 4 patients reported:
 taking better care of themselves
 understanding their health and medical conditions
better
 feeling more in control of their care
 feeling better prepared for visits
 doing better with taking their medications as
prescribed (a very big deal…)
Reports from Patients
About the OpenNotes Study
8

9. After one year, 99% of patients
wanted to continue to be able to
see their visit notes online..
When given a choice of doctors or health plans in the future:
4 out of 5 patients said availability of open notes would impact their
choice of provider.
The Bottom Line for Patients
About the OpenNotes Study
9

10. About the OpenNotes Study
Doctors’ Concerns and Experiences

11.  About 50% expected disruptions in workflow.
A year later…
 Only 3% reported longer visits, or answering
more questions afterwards
 They expected to change writing about
mental health (43%)
substance abuse (38%)
and cancer (27%)
 About 25% said they were changing the way they
wrote notes ..
About the OpenNotes StudyAbout the OpenNotes Study
They were scared…

12.  My fears: Longer notes, more questions, and messages from
patients. In reality, it was not a big deal.
 I felt like my care was safer, as I knew that patients would be able to
update me if I didn't get it right.
 I felt great about partnering with my patients, and the increased
openness.
 Patients should not have access to their notes. The note already
serves far too many purposes such as billing, research, etc, and
adding one more is not a good idea. They are not intended as a
vehicle for patient communication.
About the OpenNotes Study
Comments from Doctors

13. After a year, PCPs were asked:
Taking all considerations into account,
I would like my patients to continue
to be able to see my visit notes online.
At least 3 out of 4 said YES, and
even though some said NO,
At the end of the trial, not one doctor asked to turn it off for
their patients.
About the OpenNotes Study
The Bottom Line for the doctors
13

14. All 3 sites decided to expand OpenNotes
 Geisinger : 1,400 ambulatory
doctors/NPs/PAs, and 200,000 patients
 Harborview: all UW primary and specialty
clinics, doctors/NPs/PAs
 BIDMC: All clinicians’notes,
vast majority of ambulatory clinicians
About the OpenNotes Study
The Bottom Line for the Three Institutions
14

15. A New Medicine
that brings benefits…
and risks
A catalyst for
change…and not only
in ambulatory care
Patient Safety
About the OpenNotes StudyAbout OpenNotes
15

16. About OpenNotes
Might open notes…
(the good, bad, and the ugly)
 Bolster adherence: to preventive measures, referrals,
treatment plans?
 Bolster adherence to medicines?????
 Diminish redundant test ordering?
 Identify mistakes (commission and omission)?

17.  Affect missed appointments, visit rates?
 Help move care into the home?
 Motivate us to write differently? For whom?
 Affect patient and provider trust (in a litigious society)?
About OpenNotes
Might open notes…
(the good, bad, and the ugly)

18.  Lead patients to hide important information?
 Expose the perverse incentives of RVUs…(a question
peculiar to the USA)?
 Get providers to sell rather than…?
 Harm some patients, at times badly?
 Put (justified) plaintiffs at risk in court?
 Herald the start of an onslaught from patients and their
families?
About OpenNotes
Might open notes…
(the good, bad, and the ugly)

19. About OpenNotes
Caregivers
19

20. Medical education
About OpenNotes
20

21. Mental health
About OpenNotes
21

22. 22

23.  1 of 3 patients wanted to be able to approve what is
written in a note
 3 of 5 patients wanted the ability to add comments
to their notes
About OpenNotesLooking ahead
Clues from the OpenNotes study
23

24. Patient
Plans
Clinician
Looking aheadLooking ahead
Next: OurNotes
24

25. Looking aheadLet’s discuss…
25

26. 26

27. 27

28. % who think
Nonparticipating
PCPs (%)
Participating
PCPs (%)
Patients
(%)
Open notes is a good idea
Patients will better
understand their health and
medical conditions
Patients will worry more
Patients will find notes more
confusing than helpful
25
53
90
76
95
92
14
11
76
85
51
48
About the OpenNotes Study
PCPs’ Main Concerns

29. OpenNotes Impact on Workflow
Pre-intervention
(%)
Post-intervention
(%)
More time addressing
patient questions outside
of visits
42
More time
writing/editing notes
39 11
3
Email message volume did not change
About the OpenNotes Study
PCPs’ Main Concerns
29

30. Changes in documentation
Changed the way they
addressed:
Pre-intervention
(%)
Post-intervention
(%)
Cancer/possibility of
cancer
27
Mental health issues 43
Substance abuse 38
Overweight/obesity 19
15
24
19
16
About the OpenNotes Study
PCPs’ Main Concerns