Communities of Care, Strategic Social Interaction Design for Healthcare - idea 2010 - Amy Cueva

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

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

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

4. The Healthcare
Landscape

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

6. A healthy caretaker

7. One managing a chronic condition

8. Social Media in
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.

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
• are tools for sharing and discussing
information among human beings

12. Under the common definition
• Wikis: Wikipedia
• Blogs/Podcasts: SME, with comments
• 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
• Voice: phone, voicemail, tele-conferencing
skype, online audio recording
• 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
• Via sponsors: Insurance, hospitals,
providers, 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
• 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, phone or mobile device?
• The information is out there: In our
minds, in websites and DBs. Tech and SM
frees the info, makes it searchable/shareable.
• 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, with a majority turning to user-
generated content.

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

19. How it could help
• Timely, robust, and different information
availability and sharing, CDL, EMR, EHR, PHR
• That one detail
• Collaboration and coordinated care
• Ongoing and more frequent interactions
• Interventions, outreach
• Drug adherence, biometric feedback

20. Ideas &
Opportunities

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

22. PHR & Social Media
PHR data feeds profile
Profile becomes matching system
Rich profile attracts relevant people,
objects, 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
• SugarStats: Tracking

24. Promoting Positive Reflection
• Baseline data is being gathered
and the people are helping each
other.
• 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

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,
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
• hellohealth: Email, IM, and Video
Chat
• patientslikeme: Forum - some
caregivers participate
• 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
• Dr. access to your health journal
• Ongoing dialogue with Dr: check in
to review progress, leave notes,
system can escalate, interventions
• Connect with Dr. online via email,
instant chat, SMS, online visit

29. Care Team Collaboration

31. Influence of the System
Hi
there.
Hi
there.
• How can the system do work for the user
and for the doctor, bubbling up the most
important information?
• 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?
• 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 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. The content is the
conversation.
Designing Social Experiences:

34. Socio Cybernetic Model for Conversation

35. 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...
Social Media Design Basics

36. Start with the high-level strategic goals and objectives
for the site – then answer: why community?
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.
Why Community?

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

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 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
• Blind deployment: Ensure user involvement
in 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, and react appropriately
• Legal action: Anticipate problems,
understand audience expectations, explore
potential uses and 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
• 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?
• 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?
• What hasn’t?

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

47. Questions?

48. Design Challenge