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Communities of Care: Social Media in Healthcare
Amy CuevaMad*Pow@amycueva
Introductions, Agenda & Why I <3 Healthcare UX
Regina Holliday
@ReginaHolliday | http://reginaholliday.blogspot.com
The Healthcare Landscape
PeopleOrganizationsState of healthInfluencersInteractions Objects
Healthcare Landscape
A healthy caretaker
One managing a chronic condition
Social Media in 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.
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
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
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)
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
Communication characteristics• Live or asynchronous• 1 to 1 or 1 to many• Inbound or outbound• Proactive or reactive• Required or desired• 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, 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.
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.
How it could help• Informed, prepared, and empowered patients• Convenient access points, higher engagement• Emotional support• More persuasive, social proof
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
Ideas & Opportunities
Relationships, Frequency, and Access
Self
Friends & Family
Community
Care Team
OrganizationsTrack
Reflect
Become aware
Encourage
Achieve
Celebrate
Intervene
Reach out
Share
Visit
Inform
Communicate
Coordinate
Escalate
Obtain data
PHR & Social MediaPHR 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
Connecting Self• Wii Fit• PHRs, HRAs• Health Tracking Tools:
iPhone Apps, SMS Trackers, health journals
• patientslikeme: profile, tracking
• SugarStats: Tracking
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
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
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• 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
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
Care Team Collaboration
Influence of the System
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.
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.
The content is the conversation.
Designing Social Experiences:
Socio Cybernetic Model for Conversation
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
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?
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
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 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
• 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?
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
Potential Barriers• HIPAA• Legal• Probability of positive and clearly quantifiable
results• 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?• 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? • What hasn’t?
What do you hope to see?
• What will we see next year, or in 5 years?• What has inspired you?
Questions?
Design Challenge
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