Engaging e-Patients in a Digital World: How Collaboration, Transparency, and Consumer-Facing Technology Change Everything


Patient-Provider Collaboration:
Why Episodic Care Fails and How IT Can Maintain the Connection
Daniel Z. Sands, MD, MPH, FACP, FACMI
@DrDannySands
Society for Participatory Medicine
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, MA
© Copyright 2014 D. Z. Sands, All Rights Reserved - @DrDannySands

Disclosure of Financial Relationships
Daniel Z. Sands has relationships with entities producing,
marketing, re-selling, or distributing health care goods or
services consumed by, or used on, patients.
Conversa Health Consultant / CMO
Kinergy Health Consultant / CMO
SeniorLink, Inc. / Caregiver Homes Consultant

Think Back to Your Last Medical Visit…
• Time and cost?
• Experience?
• Necessity?
• Timeliness?
• Connection?

There is Rising Demand for
Management of Chronic Conditions

But We Don’t Have Enough Clinicians…
https://members.aamc.org/eweb/upload/The%20Complexities%20of%20Physician%20Su
pply.pdf

…We Can’t Afford Our Current System…

...And Our System Is Optimized for
Managing Acute and Episodic Care

http://content.healthaffairs.org/content/20/6/64.full

Our care systems were organized historically to
respond rapidly and efficiently to any acute
illness or injury that came through the door. The
focus was on the immediate problem, its rapid
definition and exclusion of more serious
alternative diagnoses, and the initiation of
professional treatment.
Edward Wagner, MD
Director, MacColl Institute for Healthcare Innovation at the Center for Health Studies, Group Health
Cooperative of Puget Sound, and director of Improving Chronic Illness Care

We Must Focus More on Chronic Disease
Prevention and Management

What Should Patient Care Be?

A Collaboration On The Patient’s Health

Communication
Knowledge
Co-Creation
Mutual Respect
Information
Sharing

Curing Health Care
Non-Visit-
Based Care
Patient
Engagement
New Care
Models

The Consumerization of Health
and the Virtualization of Care
Diagnose
and Treat
Prevent
and
Maintain
Anywhere
Virtual
Resources
Home
Physical
Resources
Drivers:
• Burden of chronic illness
• Aging population
• Resource maldistribution
• Cost-containment
• Consumer demand
Health Care Health
Hospital
Built on ideas from Michael Gill
$$$$$
$

Some Attributes of
Collaboration Channels
Technology Synchronous? Information Density
Telephone  
E-messaging  
Text messaging/IM /  
Remote monitoring  
Telemedicine  (usually) 
Advanced Telemedicine  
Office visit  

Personnel Also Have Attributes
Patient
Self-care
Counselor/
Educator
Clinical
Nurse
NP/PA Physician
 Different personnel can provide care
 Each has attributes
 Each should practice at “top of his/her license”
 Can add others to this list, even perhaps, Watson…

Optimizing Channel and Personnel
Patient
Self-care
Counselor/
Educator
Clinical
Nurse
NP/PA Physician
Telephone
E-messaging
Text
messaging/IM
Remote
monitoring
Telemedicine
Advanced
Telemedicine
Face-to-face visit


It can be argued that the
largest yet most neglected
health care resource,
worldwide, is the patient…
Slack WV. CyberMedicine: How Computing Empowers Doctors
and Patients for better Health Care. Jossey-Bass 2001.

What Do Engaged Patients Want?
Communication
Patient
Engagement
Information Convenience

Online Population Rising…

…And Health Info Seeking Popular

Online Health Habits of US Adults
Sources: www.pewinternet.org;
PwC HRI Social Media Consumer
Survey, 2012
 80% of online adults have looked for health info
 Rising over time
 Each day, more people search for health information than see a physician!
 More than half act on the information
 1/3 have read about others’ health experiences
 1/4 have tracked their health information online
 1/3 use social media for health

What Do e-Patients Want?
Information

Information is No Longer Locked Up
http://www.nlm.n https://twitter.com/HMSCountway ih.gov/share/image/Nlm_building_lg.jpg
This work by Old Shoe Woman is licensed under a
Creative Commons Attribution-Non-Commercial-ShareAlike 2.0 Generic License.
http://cnn.com

Asking
Tacit
Approval
Honest
Disclosures

Shifting Paradigm?
 Information asymmetry
Physician as oracle
Comfortable
A burden?
 Information symmetry
Physician as partner
Threatening vs. liberating
Physician as healer


No one knows everything.
Everyone knows something.
All knowledge resides in
networks.
Pierre Lévy, PhD
Philosopher, cultural theorist, and media scholar, University Of Ottawa, 1997
This photo by cpfl cultura is licensed under a Creative Commons Attribution 2.0 Generic License.

https://www.acor.org

My doctor prescribed ACOR
and it saved my life.
Copyright © 2012 D. Z. Sands and R. D. deBronkart. All rights reserved.

Communication

“Sorry, Dr. Sands no longer sees people. He e-mails them.”

What Have We Learned About e-Messaging?
 Includes encrypted e-mail or, more
commonly, secure web messaging
 Enables efficient communication
because it is asynchronous
 Is cost-effective and benefits both
patients and physicians
 Augments relationship building
 Is a channel for care delivery
Sources: Kane B, Sands DZ, JAMIA 1998. Delbanco T, Sands DZ, NEJM 2004.

Convenience

…stand in line for a
bank teller?
…make airline reservations
through a travel agent?
How Many of You…
http://thingsmykidswontknow.tumblr.com http://www.triporama.com/

Then Why Is Healthcare So Backwards?
The doctor’s
booked for
the next five
months!

The Age of Inconvenience is Ending
http://www.zocdoc.com/

We Make it Difficult:
Mismatch Between Desires and Service Offering
"Thinking now of new technologies your health care provider could implement, how important
would each of the following be to you?” (of patients who saw physician in past year)
0% 10% 20% 30% 40% 50% 60% 70%
Online Appts
Online Billing/Pmts
Online Costs
E-mail
Viewing Record
Available Desired (Important/Very Impt)
Source: Harris Interactive 9/10/12 at http://goo.gl/VzfmT

The Technology Foundation:
A Patient Portal
https://www.patientsite.org

Services:
Prescription refills
Appointment requests
Referrals
View bill
Education:
Search
Info prescriptions
Patient selected links
Predefined collections
Mail:
Secure
Automated routing
Task assignment
Records:
Secure
All system records
Upcoming appointments
Meds, Problems, Results
… and Notes!
Personal records

Where and How Do We
Share Health Records?
 In the office
 EHR as collaboration tool not barrier
 Sharing is encouraged when all align:
 Attitude
 Geometry
 Communication habits
 Workflow challenges
 Beyond the office: patient access to records online
 Workflow challenges (patient)
 Comprehension challenges (patient)
 Portability?

Dave (Pre-diagnosis)
This is too cool. It's almost SILLY
that things can be this easy. I am
having a very good patient/customer
experience so far.

Affective Impact: 61M Minister with DM and Chronic Pain
I have a lot of medical issues. This
email system has left me feeling
comfortable and in good hands!
Otherwise, I would feel as cold,
depleted, and alone, as the lifeless
tree in my front yard in the deepest
of winter!

www.myopennotes.org

“After the first year, 99% of the patients surveyed wanted
‘open notes’ to continue, 85% of the patients indicated that
ready access would be important for their future choice of a
provider or system, and no doctors chose to discontinue the
practice.”

Engaging Patients Leads to Benefits
Better
outcomes
Triple
Aim
Improved
satisfaction
Reduced
costs

It’s About Engagement
Engaged
Equipped
Empowered
Educated
Enlightened
Etc.

http://participatorymedicine.org
Participatory Medicine is a cooperative model of health care
that encourages and expects active involvement by all connected
parties (patients, caregivers, healthcare professionals, etc.)
as integral to the full continuum of care.
Society for Participatory Medicine
Community Advocacy Research Education
© Copyright 2014 D. Z. Sands, All Rights
Reserved - @DrDannySands

Health is What Happens
Between Episodic Care…And Dwarfs It
Visit Visit Visit

Frequent Light Touches May Be Better
Visit Visit Visit
As payment changes to reward value (better
outcomes at lower cost), patient satisfaction,
and panel size, we can rethink practice model
Support
self-care
and
caregivers
Understand
social and
cultural
determinants

Patient-Generated Health Information

Tertiary
Secondary
Primary
Self-Care
(Off the Map)
Professional
Care
Discouraged Encouraged
$
¢
Source: Ferguson, T. Consumer Health Informatics. Healthcare Forum Journal, 1995.

Individual self-care
Friends and families
Self-health networks
Professionals as
facilitators
Professionals
as
partners
Professionals
as
authorities
Professional
Care
Discouraged Encouraged
¢
$
Source: Ferguson, T. Consumer Health Informatics. Healthcare Forum Journal, 1995.

Conclusions
 Traditional health care is not adequate
 Viewing patient care as a collaboration can
open our minds to health care
transformation
 Non-visit based care, new care models, and
patient engagement all leverage HCIT and
offer tremendous opportunities for
research, development, and healthcare
transformation

Engaging e-Patients in a Digital World: How Collaboration, Transparency, and Consumer-Facing Technology Change Everything

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