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


Patient is not a third person
word…your time will come.
e-Patient Dave deBronkart
First of Ten Fundamental Truths, Let Patients Help, 2013; http://epatientdave.com

http://illness.DrDannySands.com


Prologue

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

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
[...] 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.”

What Do e-Patients Want?
Communication
Involvement
in
Care
Information Convenience

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.

Not Just for Problems: Visit Planning
Hi - there are several things I want to go over when
we meet. I suspect several will require referrals,
and given the time it takes to get a slot, I'm
thinking of making those appointments now. (It's
easy to cancel and create an opening for someone
else.) I'm 56 and I generally don't have any
complaints.
Here are the symptoms I'm concerned about:
[…]
What do you think?


The Visit

The Incidental Finding

The Incidental Finding
INDICATION: Right shoulder pain.
COMPARISONS: Comparison is made to a chest radiograph
from December 23, 2003.
TECHNIQUE: Right shoulder, three views.
IMPRESSION:
1. Degenerative changes of the acromioclavicular joint.
Normal radiographic appearance of the glenohumeral joint.
2. 3.3 cm right upper lobe lung mass needs further evaluation
with a chest CT to exclude malignancy.


Diagnosis, Information, and Support

Lesion 1 – Left Upper Lobe 39x43mm

Primary Tumor Found

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


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.

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 Inconvenience is Ending
http://www.zocdoc.com/

Ideally, What Is Patient Care?

Patient Care Is a Collaboration …

Communication
Knowledge
Co-Creation
Mutual Respect
Information
Transparency

… But Collaboration ≠ In Person
Source: natr/Community Telco

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
Treatment Health
Hospital
Built on ideas from Michael Gill
$$$$$
$

Would You Like a Visit With That Care?
Technology Synchronous? Information Density
Telephone  
E-messaging  
Text messaging/IM /  
Remote monitoring  
Telemedicine  (usually) 
Advanced Telemedicine  
Office visit  

Patient-Generated Health Information

Fun Mobility Facts!

Fun Mobility Facts!
 90% of US adults have a mobile phone
 63% use it to go online
 34% go online mostly using phones!
 58% of US adults have a smartphone
 But only 19% of those 65+
 But only 47% of those earning < $30k/yr
 42% of US adults have a tablet computer
 44% sleep with their phones
 Messaging and accessing internet most popular
http://www.pewinternet.org/fact-sheets/mobile-technology-fact-sheet/

Successful Treatment
Baseline: 39x43 mm 50 weeks: 20x12 mm


Knowledge is power.
Sir Francis Bacon
English author, courtier, & philosopher (1561 - 1626)

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

e-Patients Want To Be Engaged…
Communication
Involvement
in
Care
Information Convenience

…But 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)
© Copyright 2014 D. Z. Sands and D. deBronkart, All Rights Reserved
Source: Harris Interactive 9/10/12 at http://goo.gl/VzfmT

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

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

Patients and Physicians Each Have Expertise

Patients Can (and Must) Help


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.

Changing Nature of Relationship
Information Asymmetry Information Symmetry
Passive Recipient Active Partner
Paternalism Participation
Patient-Physician Consumer-Provider

Conclusions
 Physician and patient collaboration are critical
 Collaboration is not possible without transparency
 Consumer-facing technology—including secure e-messaging,
portals, online resources, and patient-generated
health information—lowers barriers to
engagement, empowering and enabling all stakeholders
 Participatory Medicine: an important paradigm shift
 A new dance that both partners need to learn
 Transforms patient and clinician experience
 Promises to improve quality and reduce costs

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

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