Spotlight on the Consumer Engagement: An Update on the...

April 24, 2012 Presented by: -Dr. Tom Delbanco - Principal Investigator, OpenNotes Project - Dr. Danny Sands - Senior Medical Informatics Director and Director of Healthcare Business Transformation, Cisco Systems - e-Patient Dave DeBronkart - Patient Advocate; OpenNotes participating patient

Spotlight on the Consumer Engagement: An Update on the OpenNotes Project

Advisory Council • Holt Anderson – North Carolina Health

Information and Communications Alliance, Inc. (NCHICA)

• David Baker, MD – Northwestern University • William Bernstein, JD – Manatt • Michael Bice – Kent State University • Pam Cipriano, RN, PhD – Institute of

Medicine • Adam Clark, PhD – FasterCures • Gwen Darling – Healthcare IT Central • Gwenn Darlinger – BlueCross and

BlueShield Association • Arthur Davidson, MD – Denver Health • Mary Jo Deering, PhD – Office of the

National Coordinator for Health IT • Charles Friedman, PhD – University of

Michigan • Mark Frisse, MD – Vanderbilt University

• Lillee Gelinas, RN – VHA, Inc. • Mary Rita Hyland – SSI Group, Inc. • Regina Holliday – Consumer HIT activist • Linda Kloss – Kloss Strategic Advisors • Dianne Lee – St. Louis Community

College/Region C Community College Consortia

• Patricia MacTaggart – George Washington University

• Chuck Parker – Continua Health Alliance • Andrea Sodano, PhD – School of

Management, Boston University • Timothy A. Swope – Personalized

Medicine Coalition • Steven Waldren, MD, MS – American

Academy of Family Physicians • Chantal Worzala, PhD – American Hospital

Association

NeHC University provides unique opportunities for interested stakeholders to learn about multiple health

IT initiatives, programs, and trends all in one place

HIT Orientation Careers in HIT

Trends in HIT Innovation ONC Initiatives

Spotlight Learning Series: HIE Leadership and Sustainability

Spotlight Learning Series: Beacon Communities

Spotlight Learning Series: Consumer Engagement and Health IT

Spotlight Learning Series: Consumer Engagement in Health IT This series will feature a series of case studies and discussions on the benefits of engaging consumers. Upcoming Webinars

– Best Practices for Health IT and Patient-Centered Care

– "The Community as a Learning System for Health: Using Local Data to Improve Local Health"

Mark Your Calendar

• The Patient’s Role in Improving the Quality of Information in EHRs

• Thursday, May 3, 2012 2:00PM-3:00PM ET

• Faculty: • Erin Poetter, Consumer e-Health

Policy Analyst, ONC • Praschilla Dbullah, Project Lead,

NORC at the University of Chicago • Norman K. Sondheimer, Co-Director

of the Electronic Enterprise Institute (EEI), University of Massachusetts Amherst

• Ethan Katsch, Professor of Legal Studies and Director, Center for Information Technology and Dispute Resolution (CITDR)

Spotlight Learning Series: HIE Leadership and Sustainability

Mark Your Calendar • ONC’s National HIE Strategy

• Date: Wednesday, May 2, 2012 3:30PM-4:30PM ET

• Faculty: • Claudia Williams, State HIE

Project Manager, ONC • HIE Case Study: Health Market

Science • Date: Tuesday, May 8, 2012

12:00PM-1:00PM ET • Faculty:

• Dr. Michael L. Nelson, Product Marketing Manager, Health Market Science Register now at:

http://www.nationalehealth.org/HIELeadership

Executives give valuable insight into the successes and challenges of maintaining HIE sustainability. Case studies will include:

– Coastal Carolinas Health Alliance – Dignity Health –GroupHealth

Spotlight Learning Series: Beacon Communities

This series will provide in-depth case studies of the Beacon Community grantees’ projects as they work to further build and strengthen their health IT infrastructure and exchange capabilities.

Mark Your Calendar!

• Spotlight on San Diego and Utah • Date: Thursday, May 24 1:00PM-

2:30PM ET • Faculty:

• Christie North, Vice President of Utah Programs – HealthInsight

• Anupam Goel, Co-Principal Investigator – San Diego Beacon Collaborative

Presentation slides are available now! http://www.nationalehealth.org/OpenNotes

Recorded webinar will be available in 24 to 48 hours

Full transcript will be available in approximately 7 to 10 days

Want more?

Check out the supplemental materials available on the NeHC website!

You can also continue today’s discussion by joining the Consumer Consortium on eHealth group in NeHC’s online community:

http://www.nationalehealth.org/collaborate/groups/consumer-consortium-ehealth

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OpenNotes®

Tom Delbanco, MD, and Jan Walker, RN, MBA Co-Principal Investigators

Beth Israel Deaconess Medical Center & Harvard Medical School

Supported by The Robert Wood Johnson Foundation’s Pioneer Portfolio, Drane Family Fund, Koplow Charitable Foundation

NeHC University Webinar April 24, 2012

Increasing patient engagement and medical transparency

n There are currently many strategies to increase patient engagement in promoting health and managing illness

n Increasing transparency: at many institutions, patients can view lab results, medication lists, and other parts of their records online

n Though patients legally own their medical records,

doctors typically do not share visit notes with them

BIDMC portal

OpenNotes

Enable patients to view their primary care doctors’ signed visit notes via secure electronic portals, and also remind them to review them before the next visit

For doctors, would OpenNotes…

…prove to be an additional burden? …make them spend more time worrying about and

editing notes? …lead them to change the content of what they

write/dictate in their notes?

Would patients…

… read their notes? … share them with others (and if so, how)? … find the notes helpful or confusing? … and, ultimately, deal more effectively with health and illness?

Could the medical record handle one more audience?

OpenNotes demonstration project

• 12-month demonstration project Summer 2010 – Summer 2011 (and still ongoing)

• Patients invited to view their PCPs’ signed notes via

secure electronic portals (not retroactive)

• Each patient notified automatically via the electronic portal when note was signed, and reminded to review it before next scheduled visit.

OpenNotes demonstration project 110 Volunteer PCPs and almost 20,000 of their patients who use portals participated for 12 months

n Beth Israel Deaconess Medical Center, Massachusetts (BIDMC) n 39 PCPs (33 HCA, 6 APG) n 10,800 patients

n Geisinger Health System, Pennsylvania (GHS)

n 26 PCPs n 8,800 patients

n Harborview Medical Center, Seattle (HMC)

n 45 PCPs n 270 patients

% 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

76

85

51

48

95

92

14

11

Expectations of doctors and patients

Doctors and OpenNotes

Participating PCPs’ main concerns Pre-intervention

BIDMC %

GHS %

HMC %

Changed the way they addressed:

Cancer/possibility of cancer 36 15 29 Mental health issues 45 27 55 Substance abuse 43 31 43 Overweight/obesity 19 15 21

I don’t like the idea, but I can see that this is the wave of the future so I’ll give it a try. I’m afraid it will take a lot of time.

I think patients will believe something I write in the chart more completely than when it’s verbally communicated - I think it’s more real to them.

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.

It’s the right thing to do. My patients who look up information on-line tend to be the worriers, and I think reading their notes would generate more questions and worry.

Some comments from doctors

Patients and OpenNotes

Patients’ expectations Pre-intervention

Percent who thought…. BIDMC %

GHS %

HMC %

Making visit notes available to patients is a good idea

93 94 97

They would better understand their health and medical conditions

89 93 94

Patients who read notes will be more likely to take medications as prescribed

56 73 71

The notes will be more confusing than helpful

9 11 14

Some patient comments have wide-ranging implications

“I know this is important, but I’m not going to raise it with my doctor,

since she’ll write it down.” “Doc, my mom’s worried sick over what she’s reading. Could you

please turn off her access to your notes?” “Doctor, you wrote you examined my breasts, but you didn’t.” “I read your notes posted. Most of it is fine. We did not have a

conversation about depression and I would like this remark removed. Also, I do not want mention in the note about my boyfriend. This is private information.”

“I’m so afraid that doctors are going to say, 'My God, I never had

enough time. Now, look what [OpenNotes] is doing to me...’”

A new medicine

n It aims to make people better, has side effects, and may hurt some patients

n Doctors and patients will need to learn how to use it effectively

n Portals are expensive now, but the price should come down

n It may even become standard of care (with room for exceptions)

Where may OpenNotes take us?

n Patients and doctors share in writing notes … as a contract?

n Opening notes of other clinicians

n A new type of peer review

n Patients and families contributing to safety

n A tool for caregivers

n Facebook?

What do you think?

Let’s talk…

Sources

Walker J, Leveille SG, Ngo L, et al. Inviting patients to read their doctors’ notes: Doctors and patients look ahead. Ann Intern Med; 2011;155:811-819. Delbanco T, Walker J, Darer JD, et al. Open notes: doctors and patients signing on. Ann Intern Med 2010; Jul 20;153(2):121-5.

Leveille SG, Walker J, Ralston JD, et al. Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes Project. BMC Med Inform Decis Mak. 2012;12:32. www.MyOpenNotes.org

JAMIA, 1997

Participatory Medicine Can Help Improve

the Practice of Medicine

JAMIA, 1997

JAMIA, 1997

JAMIA, 1997

1997

“The resource that is most often under-utilized – our patients” Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

“Doctors as interviewers are busy, expensive and sometimes hard to find.

“It seems reasonable, therefore, to look for substitutes that will serve at least some of the purposes of medical interviewing in widespread and inexpensive ways.”

“Doctors as interviewers are busy, expensive and sometimes hard to find.

“It seems reasonable, therefore, to look for substitutes that will serve at least some of the purposes of medical interviewing in widespread and inexpensive ways.”

NEJM paper “Patient-computer dialogue.” NEJM 197; 286(24):1304-9.

“Doctors as interviewers are busy, expensive and sometimes hard to find.

“It seems reasonable, therefore, to look for substitutes that will serve at least some of the purposes of medical interviewing in widespread and inexpensive ways.”

NEJM paper “Patient-computer dialogue.” NEJM 197; 286(24):1304-9.

1972

The purpose of recording anything

(anywhere)

is so it can be read back later

Data quality is essential.

Richard Davies deBronkart jr

Subject is a 53 year old woman...

Radiology report, 2003:

Anne McCulloh deBronkart

...hypothyroid...

My hyperthyroid mom’s discharge record, 2011

http://www.sgim.org/userfiles/file/Feb2012Web.pdf

http://www.sgim.org/userfiles/file/Feb2012Web.pdf

“of all the burdens clinicians must bear— seeing more patients in less time,

keeping up with the literature, restructuring for accountable care organizations and meaningful use—

the last thing I’d give them is a task computers can do easily,

accurately, and reliably.”

“You Can’t Handle the Truth”

It’s a particular type of perversion

to keep someone in the dark

then insult their lack of knowledge

Attitude:

Men used to insult “Women Drivers”

Royalty free ClipartOf.com/433289

Evidence:

Insurance Information

Institute http://editorial.autos.msn.com/article.aspx?cp-documentid=788126

9.2 4.0 1.8 1.6 4.1 2.5

9.2 4.0 1.8 1.6 4.1 2.5

5.3 2.0 1.3 1.6 4.0 1.7

“The solution is not to restrict and constrain.

“The solution is not to restrict and constrain.

My testimony to ONC adoption & certification workgroup, Feb 2010 on patient & family engagement

Empower the people. Enable, and train.”

JAMIA, 1997

Participatory Medicine Can Help Improve

the Practice of Medicine

JAMIA, 1997

Let Patients Help.

DZ Sands and RD DeBronkart © 2012 All rights reserved.

Medical Record Sharing: an Enlightened Physician Perspective

Daniel Z. Sands, MD, MPH Society for Participatory Medicine Cisco Systems, Beth Israel Deaconess Medical Center, and Harvard Medical School Boston, MA

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

“Knowledge is power.”

Sir Francis Bacon English author, courtier, & philosopher (1561 - 1626)

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Wisdom

Knowledge

Information

Data

Information Needed for Knowledge

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Two Types of Information in Healthcare

Sharing In the Office

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Using EHR in the Office

§ Three (not two) entities in the room § Sharing is encouraged when all align:

– Attitude – Geometry – Communication habits

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Exam Room Layouts

Frankel R, et al. J Gen Intern Med. 2005; 20(8): 677–682.

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Exam Room Layouts

Frankel R, et al. J Gen Intern Med. 2005; 20(8): 677–682.

EHR Beyond the Office

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Internet Business Solutions Group

http://www.patientsite.org

Mail: §Secure §Automated routing §Task assignment

Services: §Prescription refills §Appointment requests §Referrals §View bill

Records: §Secure §All CG records §Upcoming appointments §Meds/Problems/Results… §Personal records

Education: §Info prescriptions §Patient selected links §Predefined collections §Videos

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Benefits from Fully Shared EHR

Factor Impact “Second set of eyes” viewing record Monitor test results; error-checking

record Improved communication: provider à patient

Better patient understanding and retention; greater adherence

Improved communication: patient à provider

More complete knowledge of patient history and concern; fewer tests ordered; improved diagnostic accuracy; reduced malpractice suits

Patient research May find legitimate information that may have been missed (including information from other patients)

Patient participation in note creation More accurate notes Shared care plan Greater adherence (patients and

providers); fewer errors/near-misses Sharing of information Lowered barrier to pt engagement

Cisco Confidential Cisco IBSG © 2012 Cisco and/or its affiliates. All rights reserved.

Business Transformation Group

Challenges of Fully Shared EHR

Factor Mitigation Language and abbreviations Provide explanatory websites or

more explanation (staff time); write clearer with fewer abbreviations

Offensive terminology or phrases Use as teachable moment; avoid derogatory terms

Confusing patients Provide explanatory websites; or tools; annotate results; embargo results for short period of time

Upsetting patients

Warnings to not view if “you can’t handle the truth”; easy connection to care team

Patients noticing errors or disagreements with record

Education; amendment process

DZ Sands and RD DeBronkart © 2012 All rights reserved.

Conclusions

§ The shared EHR, used wisely and well, can transform care – In the office – Beyond the office § Sharing info lowers barriers to patient engagement § Sharing info has benefits but also challenges

Questions?

danny@dannysands.com Twitter: @DrDannySands

http://slideshare.net/dzsands

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