As the doctor-patient relationship evolves, the terms “patient activation and engagement” are cropping up more frequently in healthcare circles, including the International Pharmaceutical Congress Advisory Association (IPCAA) Conference in Philadelphia. PYA Principal Kent Bottles, MD, who is also chief medical officer of PYA Analytics, presented “Patient Focus within Healthcare Congresses.”

1. Patient Focus Within Healthcare
Congresses
Kent Bottles, MD
Faculty, Thomas Jefferson University School of Population
Health
Chief Medical Officer, PYA Analytics
IPCAA Conference
Philadelphia, PA
January 21, 2014

2. Patient Engagement/Activation
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Judith Hibbard pioneered academic study
Self management
Collaboration with provider
Maintaining function/preventing decline
Access to appropriate and high-quality care

3. Patient Engagement/Activation
• Patient Activation Measure (PAM) tool
• 4-level scale of engagement and activation

4. Patient Engagement/Activation
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Center for Advancing Health
Jessie Gruman
Identified 43 behaviors
Grouped into ten categories
“Actions individuals must take to obtain the
greatest benefit from health care services
available to them”

5. Patient Engagement/Activation
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Find safe, decent care
Communicate with healthcare professionals
Organize healthcare
Pay for healthcare
Make good treatment decisions

6. Patient Engagement/Activation
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Participate in treatment
Promote health
Get preventive healthcare
Plan for the end of life
Seek health knowledge

7. Klick Pharma ePatient Bill of
Rights
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Shared access to my data
Attitude of collaboration and overall respect
The patient is the largest stakeholder
Transparency and authenticity
Voice of the patient is legitimate clinical
resource
• Efficient communication with providers
who utilize modern technology

8. Medicare Beneficiary Survey &
Hibbard Survey
• Only 30% of older Americans possess
motivation and skills to actively engage
• 23% embraced PAM behaviors
• 12% want to remain unengaged
• 29% don’t have knowledge to understand
treatment regimens

9. Benefits of Patient Engagement
• Patients on statins more likely than
physicians to discuss symptoms/side effects
• 23% reduction in surgical interventions
with patients using shared decision making
• Patients with high PAM scores
– Perform self management behaviors
– Use self-management services
– Report high medication adherence

10. Jessie Gruman
“As a savvy and confident patient who is
flummoxed by so much of what takes place
in health care, I am regularly surprised by
how little you know about how little we
patients know. You are immersed in the
health culture…

11. Jessie Gruman
But we don’t live in your world. So we
have no idea what you are talking about
much of the time. One way to help us feel
competent in such unfamiliar environments
is to give us some guidance about what this
place is and how it works. What are the
rules?”

12. Shared Decision Making
• Approach where clinicians and patients
communicate using EBM tools to jointly make
decisions about treatment & care
• Patients supported by decision aids to deliberate
about consequences of different treatment options
to arrive at informed preferences
• It can increase patient satisfaction and decrease
cost per-capita

13. Shared Decision Making
• http://www.informedmedicaldecisions.org
• Salzburg Global Seminar The Greatest Untapped Resource in Healthcare? Informing
& Involving Patients in Decisions about
Their Medical Care
• The Salzburg Statement
(http://www.bmj.com/content/342/bmj.d174
5)

14. Social Media and Patients
• “Forget funeral selfies. What are the ethics
of tweeting a terminal illness?”
• Emma G. Keller
• January 8, 2014, The Guardian
• Lisa Bonchek Adams, Stage IV Breast
cancer patient’s 100,000 tweets
• Xeni Jardin’s tweets about cancer diagnosis
and treatment journey

15. Social Media and Patients
“I couldn’t stop reading – I even set up a
dedicated @adamslisa column in
Tweetdeck – but I felt embarrassed at my
voyeurism. Should there be boundaries in
this kind of experience? Is there such a
thing as TMI? Are her tweets a grim
equivalent of deathbed selfies, one step
further than funeral selfies? Why am I so
obsessed?”

16. Social Media and Patients
• Heroic Measures
• Bill Keller, The New York Times
• January 12, 2014

17. Social Media and Patients
• Standard bearer for an approach to cancer
that honors the warrior
• Raises false hope
• Costs too much
• Pegs patients like my father-in-law as
failures

18. Lisa Bonchek Adams
• Cancer can be fatal, even if caught early
and the patient does everything right
• Palliative care can be helpful to better life
throughout all stages of major diseases
• Clinical trials are not just last-ditch efforts
• Metastatic cancer patients know it will kill
them, but can still do things to prolong life
and improve its quality

19. Social media and patients
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Zeynep Tukekci
Social media works as a conversation
Social media works as a community
Journalists should not peruse, they should
engage

20. 3 Challenges for Healthcare
Congresses
• Support patient activation/engagement
• Support shared decision making
• Support the conversation and community
that social media allows to occur