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Communities of Care:
Social Media in Healthcare
Amy Cueva
Mad*Pow
@amycueva
    y
Introductions,
Agenda & Why I
<3 Healthcare XD
Regina Holliday



@ReginaHolliday | http://reginaholliday.blogspot.com
The Healthcare
Th H l h
Landscape
Healthcare Landscape
                  p
People
Organizations
State of health
Influencers
Interactions
Objects
  j
A healthy caretaker
One managing a chronic condition
Social M di in
S i l Media i
Healthcare
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?
Please?
• I know some stuff. I bet you all know more.
• Make a comment or ask a question
                          question.
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
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
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)
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
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
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.
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
How it could help
• Informed, prepared, and empowered patients
• Convenient access points, higher engagement
                    points
• Emotional support
• More persuasive, social proof
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,
Ideas &
Id
Opportunities
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
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
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
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,
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
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
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
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,
Care Team Collaboration
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.
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.
Designing Social Experiences:



The content is the
conversation.
Socio Cybernetic Model for Conversation
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...
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.
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?
Social Experience Design Considerations
• Create articulated contexts
• Design for identity
• Interests, Passions, Goals
• Presence
• Groups, Tribes, Cohorts
• Trust
Social Experience Design Considerations
• Reputation
• Conversation
• Spheres of Intimacy
• Privacy
• Governance
•   Serendipity
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”
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?
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
Potential Barriers
• HIPAA
• Legal
• Probability of positive and clearly quantifiable
  results
      lt
• Time and investment required
• Lack of understanding or fear
• Governance & operational support
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?
What have you seen?
• What has worked well?
• Wh t hasn’t?
  What h   ’t?
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     ?
Questions?
Design Challenge

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HxD 2012: Communities of Care: Social Media in Healthcare

  • 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
  • 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,
  • 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,
  • 30.
  • 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 ?

Editor's Notes

  1. People: Patient, family members, primary care physician, specialist, pharmacist, nutritionist, chiropractor State of health: Healthy, symptoms, Not yet diagnosed, recently diagnosed, chronic Influencers: Emotional state, financial state, level of emotional Support, level of knowledge, access to technology, laws, level of insurance Interactions: Decision support, online visits, communications, conversations Organizations: Hospitals, pharmacies, employers, government, communities, Non-Profit orgs Objects: Medications, procedures, claims
  2. People: Patient, family members, primary care physician, specialist, pharmacist, nutritionist, chiropractor State of health: Healthy, symptoms, Not yet diagnosed, recently diagnosed, chronic Influencers: Emotional state, financial state, level of emotional Support, level of knowledge, access to technology, laws, level of insurance Interactions: Decision support, online visits, communications, conversations Organizations: Hospitals, pharmacies, employers, government, communities, Non-Profit orgs Objects: Medications, procedures, claims
  3. People: Patient, family members, primary care physician, specialist, pharmacist, nutritionist, chiropractor State of health: Healthy, symptoms, Not yet diagnosed, recently diagnosed, chronic Influencers: Emotional state, financial state, level of emotional Support, level of knowledge, access to technology, laws, level of insurance Interactions: Decision support, online visits, communications, conversations Organizations: Hospitals, pharmacies, employers, government, communities, Non-Profit orgs Objects: Medications, procedures, claims
  4. Social media platforms can turn 10- or 20-minute doctor’s visits into an ongoing dialogue Knowledge from patient-peers thru social media *can* mean more helpful talks w/ dr; dr. p.o.v. helpful for patients to read.
  5. Social media platforms can turn 10- or 20-minute doctor’s visits into an ongoing dialogue Knowledge from patient-peers thru social media *can* mean more helpful talks w/ dr; dr. p.o.v. helpful for patients to read.
  6. Community: Online and Local Live Connectors Organizational (The System): Digital access to caregivers, health coordinators, health coaches, nutritionists, nurses Interpersonal: Support tools for family and friends, weaving them into the experience, interventions Individual : Goal setting and tracking (where they are – SMS, iPhone, etc), personalized program and messaging, health games , health journals, HRAs, PHRs, messages to myself.