1. Communities of Care:
Social Media in Healthcare
Amy Cueva
Mad*Pow
@amycueva
y

2. Introductions,
Agenda & Why I
<3 Healthcare XD

3. Regina Holliday
@ReginaHolliday | http://reginaholliday.blogspot.com

4. The Healthcare
Th H l h
Landscape

5. Healthcare Landscape
p
People
Organizations
State of health
Influencers
Interactions
Objects
j

6. A healthy caretaker

7. One managing a chronic condition

8. Social M di in
S i l Media i
Healthcare

9. This presentation
• Social media defined
• How it could help
• The current landscape: examples
• Ideas and opportunities
• Risks, considerations & barriers
• Success and failure
• What have you seen?
• What do you hope to see?

10. Please?
• I know some stuff. I bet you all know more.
• Make a comment or ask a question
question.

11. Social media…
• is content created by people (UGC)
• is based on user participation
• includes social networks
• is an umbrella term…
• integrates technology & social interaction
g gy
• are tools for sharing and discussing
information among human beings

12. Under the common definition
• Wikis: Wikipedia
• Blogs/Podcasts SME with comments
Blogs/Podcasts: SME,
• Microblogs: Status updates, replies/comments
• Forums: Niche, patientslikeme
• Social networks: Facebook, LinkedIn, Twitter
• Social sharing: YouTube, Flickr

13. Under an extended definition
• Text: email, SMS or MMS, instant messenger,
instant chat secure message box
chat,
• Voice: phone, voicemail, tele-conferencing skype,
online audio recording
li di di
• Video & Hybrid: video, webinar, video-
conferencing/chat (online appointments)

14. Communication access points
• Phone: Traditional, mobile, skype
• Mobile/handheld: Multiple platforms
• Computer: Personal or Dr. Office
• Kiosk: Hospital or Dr. Office
• Print: Fax, snail mail.
• In person: Humans With or without tech
• Vi sponsors: I
Via Insurance, hospitals, providers,
h it l id
government, corps, orgs

15. Communication characteristics
• Live or asynchronous
• 1 to 1 or 1 to many
• Inbound or outbound
• Proactive or reactive
• Required or desired
q
• Channel switching/coordination

16. Why social media for healthcare?
• Doctors are outnumbered: There are many
more patients than doctors.
• Frequency & access: How often do you have
access to a doctor vs. access to a computer,
vs computer
phone or mobile device?
• Th information is out there: I our minds, in
The i f ti i t th In i d i
websites and DBs. Tech and SM frees the info,
makes it searchable/shareable.
k h bl / h bl
• We have the tools: Healthcare is behind.

17. Why social media for healthcare?
• People care: They are motivated, there is a
strong sense of community, karma, give
and take.
• It is already happening: The Pew Internet and
American Life Project Survey says 61% of
Americans go online for health information
information,
with a majority turning to user-generated
content.
content

18. How it could help
• Informed, prepared, and empowered patients
• Convenient access points, higher engagement
points
• Emotional support
• More persuasive, social proof

19. How it could help
• Timely, robust, and different information
availability and sharing, CDL, EMR, EHR, PHR
y g, , , ,
• That one detail
• C ll b ti and coordinated care
Collaboration d di t d
• Ongoing and more frequent interactions
• Interventions, outreach
• Drug adherence biometric feedback
adherence,

20. Ideas &
Id
Opportunities

21. Relationships, Frequency, and Access
Track
Organizations Reflect
Become aware
Encourage
Care Team
Achieve
Celebrate
Intervene
Community
Reach out
Share
Friends & Family Visit
Inform
Communicate
Self Coordinate
Escalate
Obtain data

22. PHR & Social Media
PHR data feeds profile
Profile b
P fil becomes matching system
t hi t
Rich profile attracts relevant people, objects,
p p p , j ,
interactions
Social media enables interactions
Data makes interactions more meaningful
Interactions produce data

23. Connecting Self
• Wii Fit
• PHRs, HRAs
• Health Tracking Tools: iPhone
Apps, SMS Trackers, health
journals
• patientslikeme: profile,
tracking
• S
SugarStats: T ki
St t Tracking

24. Promoting Positive Reflection
• Baseline data is being gathered and
the people are helping each other.
y
• Can the system:
• Help the user to notice and track
the positive
• Reinforce the positive in order
to promote repetition
• Provide guidance, include
support team and introduce
professionals at certain points
• Track behaviors through and
integrate with native
communication channels: email,
text messages, instant
messages twitter facebook
messages, twitter,

25. Journaling
• Take pictures of your food – nutrition
and portion size analyzed for
feedback
• Take pictures of your walk – it get’s
reflected back to you
• Personalized outreach messages
messages,
communication plan to yourself

26. Patient Collaboration
• Ning: Anyone can create a
community on any topic, photo
& video sharing, forum, blog, profile
• Google Health Groups: Anyone, any
topic, forums
• RevolutionHealth: Forums,
rate doctors
• patientslikeme: Forum, profile, blog,
status update, comment
• SugarStats: Forums
• Daily Strength: Forums, information,
trackers
• Twitter: Text, email, online

27. Enabling & Informing Patient/Doctor Interactions
• PHRs, EMRs, EHRs
• American Well: Immediate
connection online or phone
• RelayHealth: Web Visit (Form),
Secure Messages
• h ll h lth E il IM and Video
hellohealth: Email, IM, d Vid
Chat
• patientslikeme: Forum - some
caregivers participate
i i i
• Healthcare Magic: Instant Chat,
Request Phone Call
• AthenaHealth: Automated and live
communication
• Twitter: Text, email, online

28. Enabling & Informing Patient/Doctor Interactions
• Dr. and patients can log in to review
lab results and xrays, via
screenshare or live appointment
• Log in to take a pre-visit
questionnaire, fill out forms, and
create questions for your doctor
• View doctor’s notes from visit,
(OpenNotes) and follow up care plan,
track against it
g
• Dr. access to your health journal
• Ongoing dialogue with Dr: check in to
review progress leave notes system
progress, notes,
can escalate, interventions
• Connect with Dr. online via email,
instant chat SMS online visit
chat, SMS,

29. Care Team Collaboration

31. Influence of the System
• How can the system do work for the user and
for the doctor, bubbling up the most important
information?
Hi there
there. • Can the dialogue the system has with you
improve the quality of interaction you
experience with your doctor? Can it become a
healthcare interaction unto itself?
• Can the system match people with similar
traits, match people with specialists?
p p p
• Can the system assist with forms? The patient
could fill out forms ahead of time, so they don’t
have to do it in the waiting room. Their
g
answers can yield recommended questions,
next steps, tests, etc.

32. Bringing it Together
• There is information in many
places, and holistic health portals
with caregiver communication
integration are starting to happen.
• Take a mashup, portal or
Blackboard approach: The patient’s
entry point to all of their health care
providers, personal supporters,
communities, and health
information w/ integrated digital
communication and support tools.
• Who will do this? Each doctor could
have their own virtual office, health
insurance companies, or PHR
providers could push forward.

33. Designing Social Experiences:
The content is the
conversation.

34. Socio Cybernetic Model for Conversation

35. Social Media Design Basics
You can’t design the conversation
But the interface can mediate, guide, inform the
conversation
The interface can encourage or discourage
certain types of behavior - through identity,
reputation systems, game mechanics...

36. Why Community?
Start with the high-level strategic goals and objectives for
the site – then answer: why community?
answer
What kinds of engagement do you want to encourage on
your site?
What is the desired outcome?
There is no end-state!
This will help map out your strategic direction.

37. Participation Vision
Rather than pursue Social Media strategies based
on fashion, as designers we need to think about
fashion e abo t
how we want the site to engage with people — who
want to engage with each other
and create architectures, features, and
architectures features
functionalities that creates a path for participation
Ask: where is the community going to go?

38. Social Experience Design Considerations
• Create articulated contexts
• Design for identity
• Interests, Passions, Goals
• Presence
• Groups, Tribes, Cohorts
• Trust

39. Social Experience Design Considerations
• Reputation
• Conversation
• Spheres of Intimacy
• Privacy
• Governance
• Serendipity

40. In the end: community members will own it
• Once designed, communities of care are not in the
hands of those that funded, designed, built it - it must be
g
handed over to patients and the community - letting go
is the hardest thing
• Shift thinking from “What it does” to “What people are
doing and saying”
• Create a system so that it can become what it will mean
to each person, and as a result, service the community
“The street finds it’s own uses for things”

41. Risks & Considerations
• Get me one of those!: Select channels and
solutions based upon relevancy and
appropriateness as opposed to popularity
• Bli d deployment: E
Blind d l t Ensure user involvement in th
i l t i the
design process and a solid strategy
• Bad information: How will quality of information
be measured, ensured, sustained, moderated,
handled?

42. Risks & Considerations
• Crisis mgmt: Set expectations, know when to
react,
react and react appropriately
• Legal action: Anticipate problems, understand
audience expectations, explore potential uses and
di t ti l t ti l d
misuses, design for them
• Stagnation: Plan to support and measure ongoing
participation, contribution, and
nurturing/guardianship

43. Potential Barriers
• HIPAA
• Legal
• Probability of positive and clearly quantifiable
results
lt
• Time and investment required
• Lack of understanding or fear
• Governance & operational support

44. Creating a social media strategy
• What is our objective?
• How will we measure success?
• Who will be interacting? What will they want
and expect?
d t?
• What channels/media/technologies will best support
the interaction?
• Will this design work?
• How much will this cost? How will it be supported?
• What is our implementation and evolution plan?

45. What have you seen?
• What has worked well?
• Wh t hasn’t?
What h ’t?

46. What do you hope to see?
• What will we see next year, or in 5 years?
• Wh t h inspired you?
What has i i d ?

47. Questions?

48. Design Challenge