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+1 Patient, SoCRA 21st Annual Conference
1. 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
2. Who Am I?
THE +1 PATIENT
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
3. @piaffeatx
• 5 year breast cancer survivor
• eLearning Analyst in higher
education
• Trained cancer research
advocate
• AACR
• Research Advocacy
Network
• NCCTG
• Young Survival Coalition
4. Pew Research Center’s Internet And American Life Project
TECHNOLOGY AND SOCIAL
MEDIA IN OUR LIVES
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
5. THE MAJORITY
74% of American adults use the internet
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
6. Use social networking sites
66% of adult internet users use social
network sites – about half of all adults
*as of February 2012
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
7. 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
8. ALL generations going online for news.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
9. 46%
Of all American
adults now own a
smartphone of
some kind
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
10. Who Are ePatients?
EPATIENTS
MEDICINE 2.0
PEER-TO-PEER HEALTH CARE
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
11. American adults who are online
80%
say they have looked online for
information about health,
such as a specific disease or treatment
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
12. 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.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
15. 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
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
16. ” When you hand someone a smartphone they are more likely to share, to
create – to participate, not just consume.” – Susannah Fox
THE MOBILE DIFFERENCE
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
17. 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.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
18. 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.
19. “…[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
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
20. 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.
21. Caregivers outpace other internet users
Eight in ten caregivers (79%) have
access to the internet.
Of those, 88% look online for
health information.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
22. Communities and Value Networks
IMPROVING THE DISEASE
EXPERIENCE
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
23. My experience as an
engaged patient.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
24. 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.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
25. Post Diagnosis
• Understanding MY breast cancer
• Treatment Options and Clinical Trials
• Finding Other Young Survivors
• Eventually, understanding research and improving survivorship
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
26. 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.
28. I use TrialX app on my smartphone
(free).
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
29. Enter my disease details,
desired study type, and
location.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
30. And find clinical trials in my area that
fit my personal situation.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
31. 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/
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
34. Patient Engagement
EMERGING OPPORTUNITIES
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
35. 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.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
36. 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
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
37. Patient Recruitment?
• FDA requirements and IRB approvals still pose many challenges
for using social media for patient recruitment. But I want it!
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
38.
39. 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.
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
40. EHR Possibilities?
From Juhan Sonin,
http://www.flickr.com/photos/juhansonin/3093096757/in/set-72157610925772960/
41. Value Networks
EXAMPLES
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
44. Thank You!
Leslie Hammersmith
@piaffeatx
Lhammersmith@yahoo.com
217.689.1030
SoCRA 21st Annual Conference Las Vegas, NV September 21, 2012
Notes de l'éditeur
23% of social network site users, or 11% of adults, have followed their friends’ personal health experiences or updates on the site.17% of social network site users, or 8% of adults, have used social networking sites to remember or memorialize other people who suffered from a certain health condition.
And getting news in more personal ways – sharing through Facebook, for example.
Searching for health information is the 3rd most popular internet activity – following using a search engine and checking email.
Other activities: 18% have gone online to find others who might have health concerns similar to theirs.16% have consulted online rankings or reviews of doctors or other providers.15% have consulted online rankings or reviews of hospitals or other medical facilities.
25% of all smartphone owners say their phones are their main source of internet access.9% increase in tablet ownership in ONE MONTH!25% The percentage of cell owners who, during the 2011 holiday season, used their phone inside storesto gather price comparisons
Pew Internet research shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.Also makes someone more likely to blog.
Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health informationCaregivers outpace other internet users on every health topic, from looking up certain treatments to hospital ratings to end-of-life decisions.
You can add in the next slide the tweet chats calendar for September 2012. http://www.symplur.com/healthcare-hashtags/tweet-chats/
Enable commentsHave a strategy for handling content and feedback – especially negative feedbackRESPONDConsistency in postingCross-post on multiple channels – use widgetsCommunity providers mean access to the best (curated) resources for the patient!--http://socialmediatoday.com/node/545540Start a digital dialogue using Facebook, Twitter, and YouTubeBecome an online voice for your community – start conversationsFind ways to connect / interactShare something of valueRecommend other sites, articles, links, tools, tips Collaborate and encourage participationBuild relationships – communicate“Engage and educate” your community with timely informationShare your opinion on healthcare policy Encourage your staff to participate in posting their helpful healthcare tips Do not blog about specific cases, or reveal any customer dataDo not offer medical advice! (educate, don't diagnose)
