OpenNotes began as a research project that studied the effects of allowing patients access to their primary care doctors' visit notes. The study found that patients who read their notes felt more engaged in their care, better understood their conditions, and were better prepared for visits. Doctors had initial concerns about increased workload, but found little real impact. After one year, 99% of patients and the majority of doctors wanted to continue open notes access. The research demonstrated that open notes can help patients manage their health more effectively with little negative impact. The open notes movement has now expanded beyond primary care and many organizations are adopting the practice.

1. www.myopennotes.org

2. Background
Background information for using these slides:
•
OpenNotes began as a research and demonstration project that ran from 2010 to 2011 in primary
care in three sites, led by Beth Israel Deaconess Medical Center in Boston.
•
The study was funded by the Robert Wood Johnson Foundation (RWJF) and published in the
Annals of Internal Medicine in October 2012: “Inviting Patients to Read Their Doctors' Notes: A
Quasi-experimental Study and a Look Ahead.” The following slides report on these results.
•
Today, the study investigators and others are expanding OpenNotes beyond primary care and
studying further implications for patients, caregivers, and clinicians in specialty care, psychiatry,
and more. RWJF continues to fund OpenNotes projects, including an advocacy campaign to make
sharing visit notes a routine part of care.
•
The team has published several papers and maintains the OpenNotes website
(www.myopennotes.org) where you can find published papers, news, and other materials.
www.myopennotes.org

3. About the OpenNotes Study
Demonstration project summer 2010 – summer 2011 (and still ongoing)
Patients invited to view their PCPs’ 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 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
www.myopennotes.org

4. The Study’s
Three Principal Questions
Would OpenNotes help patients become more engaged
in their care?
Would OpenNotes affect doctors’workflow negatively?
After one year, would patients and doctors choose to
continue?
www.myopennotes.org

5. Participants
108 volunteer PCPs and more than 19,000 of their patients
who use portals
•
BIDMC (urban and suburban Boston)
• 39 PCPs
•
Geisinger Health System (rural Pennsylvania)
• 24 PCPs
•
10,300 patients
8,700 patients
Harborview Medical Center (inner city Seattle)
• 45 PCPs
www.myopennotes.org
270 patients (new portal)

6. PCPs’ Concerns and Experiences
(surveys after 12 months experience with open notes)
www.myopennotes.org

7. PCPs’ Main Concerns
changes in workflow
Pre-intervention (%)
BIDMC/GHS/HMC
Post-intervention (%)
BIDMC/GHS/HMC
Visits significantly
longer
23/32/21
3/5/0
More time addressing
patient questions
outside of visits
49/45/34
8/0/0
More time
writing/editing/
dictating notes
46/36/34
21/14/0
And, compared to the year preceding the intervention, the volume of e-mails
from patients did not change
www.myopennotes.org
(Delbanco et al, Ann Int Med, 2012)

8. PCPs’ Main Concerns
changes in documentation
Changed the way they
addressed:
Pre-intervention (%)
BIDMC/GHS/HMC
Post-intervention (%)
BIDMC/GHS/HMC
Cancer/possibility of
cancer
33/18/26
26/18/3
Mental health issues
44/27/53
36/27/11
Substance abuse
38/32/42
28/23/8
Obesity
18/18/21
33/5/5
www.myopennotes.org

9. Patients’ Experiences
www.myopennotes.org

10. Among Patients
with Notes (Visits):
• 82% opened at least one of their notes
• Few patients said reading notes made them
• Worried (5-8%)
• Confused (2-8%)
• Offended (1-2%)
• 20-42% shared notes with others
www.myopennotes.org

11. Among Patients
with Notes:
• 70-72% of patients across the three sites reported taking
better care of themselves
• 77-85% reported better understanding of their health and
medical conditions
• 76-83% reported remembering the plan for their care
better
www.myopennotes.org

12. Among Patients
with Notes:
• 69-80% felt better prepared for visits
• 77-87% felt more in control of their care
• 60-78% among those taking medications reported
“doing better with taking my medications as prescribed”
www.myopennotes.org

13. Comments
and
the Bottom Line
www.myopennotes.org

14. Comments from Patients
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).
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.
If this had been available years ago I would have had my breast cancer
diagnosed earlier. A previous doctor wrote in my chart and marked the exact
area but never informed me. This potentially could save lives.
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. I find the notes more
accurate than my recollections, and they allow my family to understand what is
actually going on with my health, not just what my memory decides to store.
www.myopennotes.org

15. Comments from Doctors
I had to have better documentation, which is a good thing.
My fears: Longer notes, more questions, and messages from
patients. In reality, it was not a big deal.
For me the most difficult thing was having to be careful about
tone and phrasing of the notes knowing the patient would be
reading them.
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 also felt great about
partnering with my patients, and the increased openness.
www.myopennotes.org

16. The Bottom Line for PCPs
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.
Some said no:
26% of BIDMC PCPs
17% of GHS PCPs
19% of HMC PCPs
But, when offered the option of turning off open notes at the
end of the year-long intervention, not one doctor asked to do
so.
www.myopennotes.org

17. The Bottom Line for Patients
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 the availability of open notes would
impact their choice of provider
www.myopennotes.org

18. The Bottom Line for
the Three Institutions
All 3 sites decided to expand OpenNotes
• Geisinger and Harborview: MDs/ NPs/PAs in ambulatory
practices
• BIDMC: All clinicians’notes (ambulatory opened in 2013 and
inpatient notes planned for 2014)
www.myopennotes.org

19. The Inexorable Rise of Online
Access and Transparency
Health care becoming more transparent: Open
disclosure, lab results, pricing, patient portals, Blue
Button…
Consumers:
• “I don’t know if I want to read my entire medical record, but I
want to have it.” (focus group participant)
• Government’s direct-to-consumer promotion of HIT
• Give Me My DaM Data (Data about Me)
www.myopennotes.org

20. Transparency Makes Headlines
The Road Toward Fully Transparent Medical Records
Letting Patients Read Doctors’ Notes
Consumers Gaining Ground in Healthcare
Ten Ways Patients Get Treated Better
Inviting Patients to Read Their Doctors' Notes:
A Quasi-Experimental Study and a Look Ahead
Will Reading Your Doctor’s Notes Lead to Better Health?
www.myopennotes.org
Should Patients See Their Doctors’ Notes?

21. OpenNotes: Standard of Care
Guest and Quincy. Consumers Gaining Ground in
Health Care, JAMA, 2013
Walker, Darer, Elmore, and Delbanco. The Road
toward Fully Transparent Medical Records, N Engl J
Med, 2013
www.myopennotes.org

22. Patients Pointing
toward the Future
In the study:
49-56% of patients wanted patient proxies to have access
86-88% of patients wanted access to inpatient notes
59-62% of patients wanted to add comments to their notes
30-40% of patients wanted to be able to approve what is
written in a note
www.myopennotes.org

23. OpenNotes is like a New
Medicine
• Its goal is to help people manage health and illness more
effectively
• It can have side effects and may hurt some patients
• Clinicians and patients will need to learn how to use it
well
www.myopennotes.org

24. Future Directions
Most organizations adopting OpenNotes begin by sharing clinicians’ notes in
ambulatory care.
Organizations have or will soon begin sharing notes with:
•
Caregivers
•
Psychiatry patients
•
Inpatients
And research continues:
•
Open notes and patient safety
•
Open notes and medication adherence
•
Open notes and end of life care
•
Patients and clinicians co-generating notes
www.myopennotes.org

25. Join the OpenNotes Movement!
Visit the OpenNotes website www.myopennotes.org and sign up
for the mailing list
Resources for organizations implementing open notes
• Toolkit for implementers
• Roadmap and advice about key decisions
• Sample FAQs for patients and clinicians
• Sample communications materials
• Resources for evaluators
• All open notes surveys are available free of charge
• Links to all open notes papers are on the website
Need something else? Contact the OpenNotes team:
• myopennotes@bidmc.harvard.edu
www.myopennotes.org

26. Questions
www.myopennotes.org
www.myopennotes.org