+1 Patient, SoCRA 21st Annual Conference

The +1 Patient
Social Media and the Disease Experience

Leslie Hammersmith
eLearning Analyst and Cancer Research Advocate
University of Illinois at Urbana-Champaign

SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012

Who Am I?

THE +1 PATIENT


@piaffeatx

• 5 year breast cancer survivor

• eLearning Analyst in higher
education

• Trained cancer research
advocate
• AACR
• Research Advocacy
Network
• NCCTG
• Young Survival Coalition

Pew Research Center’s Internet And American Life Project

TECHNOLOGY AND SOCIAL
MEDIA IN OUR LIVES


 THE MAJORITY 

74% of American adults use the internet


Use social networking sites

66% of adult internet users use social
network sites – about half of all adults

*as of February 2012


Changes in news consumption.

Source: Nielsen Media Research, the Audit Bureau of Circulation and Arbitron, http://stateofthemedia.org/2012/overview-4/key-findings/#fn-10479-1

ALL generations going online for news.


46%
Of all American
adults now own a
smartphone of
some kind


Who Are ePatients?

EPATIENTS
MEDICINE 2.0
PEER-TO-PEER HEALTH CARE

 American adults who are online 

80%
say they have looked online for
information about health,
such as a specific disease or treatment


Internet Users and Health Information

• 34% have read someone else’s commentary or experience about
health or medical issues on an online news group, website, or
blog.

• 25% have watched an online video about health or medical
issues.

• 24% have consulted online reviews of particular drugs or
medical treatments.


your topic goes here

• YOUR SUBTOPICS GO HERE

Finding ePatients

• Society for Participatory Medicine, http://participatorymedicine.org/

• Partnership With Patients, http://partnershipwithpatients.com

• E-patients.net

• Patientslikeme.com

Frost JH, Massagli MP. Social Uses of Personal Health

? Information Within PatientsLikeMe, an Online Patient
Community: What Can Happen When Patients Have
Access to One Another’s Data. J Med Internet Res
2008;10(3):e15. URL: http://www.jmir.org/2008/3/e15/
doi: 10.2196/jmir.1053 PMID: 18504244


” When you hand someone a smartphone they are more likely to share, to
create – to participate, not just consume.” – Susannah Fox

THE MOBILE DIFFERENCE


The Mobile Difference

1 in 4 cell owners used their phone inside stores to gather price
comparisons during the 2011 holiday season.

42% of smartphone owners between the ages 18-29 say their
phones are their main source of internet access.

19%
The percentage of adults who own a tablet computer as of mid-
January 2012, up from 10% in mid-December 2011.


Healthcare Extenders

From: HealthEd Academy. How Patients Learn in the Digital Age. Healthcare Extender Lens Report.
http://www.hitconsultant.net/2012/07/25/how-patients-learn-in-the-digital-age-infographic/. Accessed July 25 2012.

“…[H]aving a chronic disease significantly increases an internet user's
likelihood to say they both contribute and consume user-generated content
related to health. They are learning from each other, not just from
institutions.” –Susannah Fox

THE DIAGNOSIS DIFFERENCE


1 in 4 of those living with chronic disease, those who are caring
for a loved one, and those who have experienced a significant
change in their physical health go online to find others who have
similar chronic conditions.
– Popularity of blogging sites such as CarePages and
CaringBridge, for example.
– Many other patient- and disease-centered sites.

Caregivers outpace other internet users

Eight in ten caregivers (79%) have
access to the internet.

Of those, 88% look online for
health information.


Communities and Value Networks

IMPROVING THE DISEASE
EXPERIENCE


My experience as an
engaged patient.


Pre-Diagnosis

• Every website I could find on breast cancer detection, pathology,
and next steps.

“breast cancer ultrasound
images”

“needle biopsy”
“breast cancer young women”

• Most of my information came from organizations like Susan G.
Komen and Young Survival Coalition – not from my healthcare
providers.

Post Diagnosis

• Understanding MY breast cancer

• Treatment Options and Clinical Trials

• Finding Other Young Survivors

• Eventually, understanding research and improving survivorship


YSC is the premier
international organization
dedicated to the critical issues
unique to young women and
breast cancer.

YSC works with
survivors, caregivers
and the medical,
research, advocacy and
legislative communities
to increase the quality
and quantity of life for
women diagnosed with
breast cancer before
age 45.

I use TrialX app on my smartphone
(free).


Enter my disease details,
desired study type, and
location.

And find clinical trials in my area that
fit my personal situation.

Curating Information via Crowdsourcing

• Microblogging, Tweet Chats, Facebook, Bulletin Boards

• Finding professional networks
– Conference and topic hashtags (#)
– Professional Networking Sites

• Connecting with other patients and advocates
– Patient-Centered Sites
– Training and education through professional organizations

Tip: Starting point for Healthcare Hashtags and Topics on Twitter,
http://www.symplur.com/healthcare-hashtags/regular/


Examples


Patient Engagement

EMERGING OPPORTUNITIES


Listen and Engage

• Pay attention to your networks. Listen!

• Engage your connections and patients frequently. Support them!

• Embrace social media as a collaborative tool to unite staff,
volunteers, and patients.


Engage and Educate

• Make your presence about educating your community with timely
information. Share general, informative, interesting content!

• Engage – don’t diagnose.

• Demonstrate your value – share your success stories


Patient Recruitment?

• FDA requirements and IRB approvals still pose many challenges
for using social media for patient recruitment. But I want it!


Compliance and Access?

• Can Social Media help manage compliance with state and federal
laws?
– Solutions that enable social interaction while at the same time
help address compliance issues. (OpenQ?)

• Connecting clinical trials to mobile devices, and using mobile
devices to track compliance, send reminders to patients, collect
feedback.


EHR Possibilities?

From Juhan Sonin,
http://www.flickr.com/photos/juhansonin/3093096757/in/set-72157610925772960/

Value Networks

EXAMPLES


Example: Partnership With Patients


Thank You!

Leslie Hammersmith
@piaffeatx
Lhammersmith@yahoo.com
217.689.1030


+1 Patient, SoCRA 21st Annual Conference

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