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