Engaging e-Patients in a Digital World (ACP 2013)

Engaging e-Patients in a Digital World: 
How e-Messaging, Social Media, and Patient Activation Can
Transform Your Practice

Daniel Z. Sands, MD, MPH
Society for Participatory Medicine
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, MA Slides at http://goo.gl/CtjgN

© Copyright 2013 D. Z. Sands, All Rights Reserved

Objectives
1. How are some advanced physician-patient communication
and collaboration technologies being used in medical care?
2. What are some challenges in the use of social networking
(e.g., Facebook, Twitter) in patient care and how can I
overcome them?
3. How can care and collaboration be enabled by using advanced
technologies, such as videoconferencing, Web-based
collaboration, social networking, patient health records, and
patient portals?
4. How can social networking benefit patients without involving
physicians?
5. What “killer” apps (smartphone and tablet) are available to
engage patients and facilitate self-care?


Disclosure of Financial Relationships

Daniel Z. Sands has disclosed relationships with entities
producing, marketing, re-selling, or distributing health care
goods or services consumed by, or used on, patients.

 SeniorLink, Inc. – Consultant

 BestDoctors, Inc. – Consultant

 Kinergy Health – Consultant

 PostWire – Consultant


Connecting and Agenda-Setting

http://www.patientsite.org


Mail:
Secure Services:
Automated routing Prescription refills
Task assignment Appointment requests
Referrals
View bill
Records:
Secure
All system records
Upcoming appointments
Meds/Problems/Results…
Personal records

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

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!


Connecting with Patients: e-Communication

 e-Communication includes encrypted
e-mail or, more commonly, secure web
messaging

 e-Communication can provide
an efficient means of communication
because it is asynchronous

 This is cost-effective and benefits both
patients and physicians

Sources: Kane B, Sands DZ, JAMIA 1998. Delbanco T, Sands DZ, NEJM 2004.

Question

 Using e-mail with patients…

a. Increases liability and is a HIPAA violation
b. Increases liability but is not a HIPAA violation
c. Does not affect liability but is a HIPAA violation
d. Does not affect liability and is not a HIPAA violation
e. None of the above

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


Question

 Most of the health information on the internet is
bad and patients can’t differentiate the good from
the bad.
a. True
b. False


ACOR is great. I posted two messages
tonight and got responses in 4 and 11
minutes. One responder also sent a private
note mentioning Robin and Cathy. The other
responder was Cathy. :)

Through that list I've also found several
other useful sites.

Copyright © 2012 D. Z. Sands and R. D. deBronkart. All rights reserved.

My doctor prescribed
ACOR and it saved my
life.

Copyright © 2012 D. Z. Sands and R. D. deBronkart. All rights reserved.

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

 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

Sources: www.pewinternet.org;
PwC HRI Social Media Consumer
Survey, 2012

e-Patients Want To Be Engaged…

Communication

Involvement
in
Care

Information Convenience


But Are All Patients Ready for Engagement?

Source: Adapted from DiClemente and Prochaska, 1998 by http://www.adultmeducation.com/FacilitatingBehaviorChange.html

…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)
Source: Harris Interactive 9/10/12 at http://goo.gl/VzfmT

Meaningful Use


Meaningful Use and Patients


http://www.nationalehealth.org/patient-engagement-framework

KP.org: Efficiencies

 Electronic health record use leads
to fewer office visits (Health
Affairs, Vol. 28, 2009)

 Online behavior change program
use leads to increased productivity
at work (HealthMedia, 2008)

 Patients booking online
appointments are more likely to
keep them (KP study, 2008)

 Access to forms and health plan
insurance documents saves
printing and postage costs


KP.org: Health Outcomes

Improved quality scores
associated with secure
messaging, including 2
percent to 6.5 percent
improvements in
glycemic, cholesterol and
blood pressure screening
and control.

Health Affairs 29, NO. 7, 2010

KP.org: Health Outcomes

 Digital Coaching results in
positive health outcomes

 Recent data show that over half
of participants:
 Lose weight
 Reduce stress
 Quit smoking
 Improve diet


www.myopennotes.org

OpenNotes: Results

Patients: Physicians:
 47-92% viewed  70-72% took
 0-5% felt visits longer
at least one better care of
note themselves
 0-8% took more time in visits
 20-42% shared  60-78%
the note described  0-21% took more time writing
better notes
 77-85% medication
reported better adherence
 No change e-mail volume
understanding
of conditions  92-99% did not
feel  3-36% changed their note content
overwhelmed
 77-87% felt
more in control  Many described strengthened
relationship with patients
www.myopennotes.org

[Health 2.0 is] the use of social software
and light-weight tools to promote
collaboration between patients, their
caregivers, medical professionals, and
other stakeholders in health.


Jane Sarasohn-Kahn
Wisdom of Patients: Health Care Meets Online Social Media, California HealthCare Foundation 2008

50

Wikis: The Wisdom of the Crowd

The wisdom of the crowd refers to the process of taking into account the
collective opinion of a group of individuals rather than a single expert to
answer a question. This process, while not new to the information age, has
been pushed into the mainstream spotlight by social information sites such as
Wikipedia and Yahoo! Answers, and other web resources
that rely on human opinion.

Source: http://en.wikipedia.org/wiki/Wisdom_of_the_crowd

What are Social Networks?
 Illuminate our social
and professional
networks
 Expand our
communication
options
 Provide context and
meaning to our
communication
 Validate who we are
through our
associations

Question

 The elderly are not significant users of social media.
a. True
b. False

Source: http://www.shapeup.com

Patient Network Plus:

SHARE FIND LEARN
Patients’ sharing detailed Patients’ find other patients like The shared information creates
health data is what makes them. They discover what a new knowledge about the
our communities special. options are available for real world treatment,
This information is the basis treatment and if their experience symptoms, and reality of living
of the PatientsLikeMe with their disease is normal. They with illness. Patients learn about
network and validates each can reach out to others like them their disease and themselves in
individual for advice and insight. context of the community
Source: http://patientslikeme.com

“On the Internet, nobody knows you’re a dog”

Medical Professional Social Networks

Question

 Twitter has no use in healthcare.
a. True
b. False

Source: http://philbaumann.com/140-health-care-uses-for-twitter/

Twitter’s Value to Me
 Information/links/opinions from people I trust

 News alerts

 Concise

 Can search, scan, drill down

 Platform for me to share ideas

 Build community of followers/build my brand

 Determine zeitgeist of conferences I did not attend

 Share key points of conferences (for others and for me)

Ethics and SM Cases

 Surgical resident taking picture of patient's tattooed
penis with phone during gallbladder surgery

 Physician posting pictures of injured nursing home
patient on Facebook

 Physician making fun of patients on his blog

 Posting video of end-of-year party performance in
which patients were objects of derision

Ethics and SM Cases

 Participating in inappropriate Facebook groups

 Posts promoting inappropriate behavior
(sex, drugs, alcohol...)

 Posting patient information

 Providing medical advice online

 Friending patients

“The AMA's Code of Medical Ethics already
contains an abundance of guidance for physicians
regarding professional interaction with their
patients that applies to communication in all
settings, including online.”


Shore R, Halsey J, Shah K, Crigger B, Douglas SP.
Report of the AMA Council on Ethical and Judicial Affairs: Professionalism in the Use of Social Media. J Clinical Ethics 2011. 22:2; 165-
72.

“Physicians must recognize that actions online and
content posted may negatively affect their
reputations among patients and colleagues, may
have consequences for their careers ..., and can
undermine public trust in the medical profession.”


Shore R, Halsey J, Shah K, Crigger B, Douglas SP.
Report of the AMA Council on Ethical and Judicial Affairs: Professionalism in the Use of Social Media. J Clinical Ethics 2011. 22:2; 165-
72.

Shifting Paradigm?
 Information asymmetry
Physician as oracle
Comfortable
A burden?

 Information symmetry
Physician as partner
Threatening vs. liberating
Physician as healer


The Power of “I Don’t Know”


[T]he education of health professionals in the 21st
century must focus less on memorising and
transmitting facts and more on promotion of the
reasoning and communication skills that will
enable the professional to be an effective
partner, facilitator, adviser, and advocate.


Health Professionals for a New Century
Commission on Education of Health Professionals for the 21st Century. Lancet 2010.


Tacit Honest
Asking
Approval Disclosures


It’s About Engagement

Engaged
Equipped
Empowered
Educated
Enlightened
Etc.

Encouraged $ Tertiary

Professional
Secondary
Care

Primary

Self-Care
Discouraged

(off the Map)
¢

Source: Ferguson, T. Consumer Health Informatics. Healthcare Forum Journal, 1995.

Encouraged ¢ Individual self-care

Friends and families

Self-health networks

Professionals as
facilitators
Discouraged

Professionals Professional
as Care
partners
Professionals
$ as authorities

Source: Ferguson, T. Consumer Health Informatics. Healthcare Forum Journal, 1995.

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. The “participatory” concept
may also be applied to fitness, nutrition, mental health, end-of-life
care, and all issues broadly related to an individual’s health.

Society for Participatory Medicine

Community Advocacy Research Education

But What About Physician Concerns?
 Time  Helping patients but not me
or my practice
 Money
 Don’t know how to get
 Liability started
 Privacy


Top 10 Reasons e-Messaging Pays Off
1. Attain Meaningful Use 2 and 3 goals

2. Time shifting

3. Take care of patients in your pajamas (or running clothes)

4. Increase your satisfaction

5. Increase patient satisfaction

6. See only your patients who really need F2F care (RVU or capacity)

7. Keep your patients healthier / improve outcomes

8. Reduce malpractice liability

9. Have automatic documentation of patient communications

10. Offset phone call volume


Do We Need Most F2F Visits?
Technology Synchronous? Information Density
Telephone  
E-messaging  
Text messaging/IM /  
Remote monitoring  
Telemedicine  (usually) 
Advanced Telemedicine  
Office visit  


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.


Question

 What technology has had the greatest impact on
patient empowerment?
a. Facebook
b. Mobile phone
c. The Web
d. Twitter
e. None of the above

Because of the Web, Patients Can Connect to Information
and Each Other (and to Doctors)


[P]hysicians are reluctant to encourage
patient participation because either they
refuse to delegate power or control
or they are afraid to lose their identity.

Longtin Y et al. Patient participation: current knowledge and applicability 
to patient safety.

Mayo Clin Proc 2010;85(1):53-62.


Changing Nature of Relationship

Information Asymmetry Information Symmetry

Passive Recipient Active Partner

Paternalism Participation

Patient-Physician Consumer-Provider

Conclusions

 Physician and patient engagement are critical

 Participatory Medicine and Health 2.0: an important paradigm
shift
 A new dance that both partners need to learn
 Transforms patient and clinician experience
 Helps shift balance of power
 Promises to improve quality and reduce costs

 Connected technology, including secure e-
messaging, PHRs, and online resources lowers barriers to
engagement, empowering and enabling all stakeholders


Questions?

Danny@DrDannySands.com
http://www.DrDannySands.com
@DrDannySands

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