Social Media and Patient-Centric Design: Facilitating Provider/Patient Relationships

Amy CuevaChief Experience Officer, Mad*Pow@amycuevawww.madpow.net

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.• Use the chat module.• No guarantees. I’ll do my best.

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.

http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx

Connecting:• Self• Patients• Patients and supporters• Patients and caregivers• Caregivers (care team)• Researchers• Companies/Orgs and patients or

caregivers

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

How it could help• Informed, prepared, and empowered

patients• Convenient access points, higher

engagement• Emotional support• More persuasive, social proof

Self• Wii Fit• PHRs, HRAs• Health Tracking Tools:

iPhone Apps, SMS Trackers, health journals

• patientslikeme: profile, tracking

• SugarStats: Tracking

Patients & Caregivers•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

Patients•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

Ideas & Opportunities

Individual

Interpersonal

Organizational

Community

Society•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.

Ideas & Opportunities•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

Ideas & Opportunities•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

Ideas & Opportunities•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

Ideas & Opportunities•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.

Ideas & Opportunities

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.

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?

Links and Sources• http://www.nytimes.com/2009/06/11/

health/11chen.html• http://www.chcf.org/topics/

chronicdisease/index.cfm?itemID=133631

• http://mashable.com/2009/10/05/social-media-healthcare/

Session Comments & Questions• I have wondered for the last couple of years WHY is healthcare behind in Social media?• CDL definition?• Healthcare is behind mostly because as a group we are, interestingly enough, terrified

of technology!!!• Do we need separate social media platform specific to healthcare or do u see existing

ones like twitter, facebook serving the purpose very well?• I hear from many authorities that it is VERY difficult and nearly impossible for social

media technologies/free standing companies to collaborate with existing EHR companies. Is that true? How do you heighten your chances to work with a McKesson or Epic?

• HIPAA would restrict the type of social media we could use depending upon the application (e.g. provider to patient).

• Are there any hospitals that utilize social media so patients can talk to each other - where the hospitals have some kind of regulation?

• Legally, information used in the care process is now part of the provider/hospitals 'legal' medical record. How do these tools accommodate incorporating material submitted to a provider via these tools?

• Seems like not using an encrypted portal opens up HIPAA issues that would require a special consent form between the patient and the provider in order to remove the PHI exchange from the 'unsecured' (not encrypted or destroyed) category. Sample forms?

Session Comments & Questions• What if you have developed an idea, how do you get it out to a pilot? What is

the best way and with whom? hospitals or insurance companies?• Outside of HMOs and Co-op's Doctors don't have time for online collaboration,

nor do they get paid for it. What positive signs do you see in policy to address this issue to increase healthcare social networking with practitioners?

• We've found that patient-physician email saves physicians time by reducing/eliminating phone tag, with resulting dramatic increases in patient satisfaction, so perhaps not every interaction needs payment to be successful.

• What have you learned about consumer information overload given all the social media sources?

• Good question on who is the more frequent user of social media tools. provider, physician, nurse, or patient

• Hi, I heard about a hospital looking into using Second Life to help determine preferences of potential consumers - have you heard about any organizations successfully doing this?

• Have you come across any companies or startups who are running healthcare social media as a revenue model? I am planning to start this in India

• I think it was BCBS of Mass that has started reimbursing for email/telephone appointments with patients so it's not out of the realm of possibility.

Session Comments & Questions• What about the organization--can you speak further about specific organizational benefits

that would coincide with objectives in outcomes and such that really benefit the hospital ??

• I hear from many authorities that it is VERY difficult and nearly impossible for social media technologies/free standing companies to collaborate with existing EHR companies. Is that true? How do you heighten your chances to work with a McKesson or Epic?

• I just found an article on AHIP saying Aetna and Cigna are reimbursing• How to address identity verification concerns like someone impersonating a care giver,

physician or hospital on a non-company owned website. How to inform patients where they can or cannot find you on the web … and trust they are talking with a representative

• Can traditionally one-to-one communications systems like telephone really be considered social media? Thought the whole point of social media was that it enables many-to-many communication?

• If all kinds of media are social media, then we don't need the term social media• What concerns me with using social media it increases exponentially interactions and

data - How do you get to the important versus just the interesting.• With regard to Healthcare environments, how does one deal with the ever pressing

HIPPA restrictions and requirements when implementing social networking solutions?• I'm a big fan of hellohealth ! i hope to join them after i finish residency.

Session Comments & Questions• Who regulates American Well? How do you know you are actually talking to a

doctor or it isn't a scam.• It's pretty cool because its an EMR, PHR, practice management in one and their

interface is similar to facebook, like a social network between doctors and patients• What's the difference between something like American Well or hellohealth vs. just

e-mailing my pcp?• I really liked the physicians who have been tweeting surgical procedures.• Well the tweeting during surgery was done outside of the actual operating room,

usually done by a resident following the surgeon. at least thats what ive heard. :)• How can hospitals get comfortable with participating in online conversations that

they don't control? Risk of negative comments about hospital makes many hospitals wary of social media

• If a hospital were to set up patient-to-patient discussions, what about the risk of patients leading other patients astray? How do hospitals protect themselves legally?

• What concerns me with using social media it increases exponentially interactions and data - How do you get to the important versus just the interesting.

• any 'e help' for patients to fill out forms or interactive Q&A for procedure preps, etc. would be very useful.

Session Comments & Questions• Access to patient info also needs to be tracked and reproducible, as well as

'approved' by the patient.• I'm interested in virtual world applications for health care institutions, do you have

any insight on that topic?• An example in the society government sector: ONC uses blog to spur public

comments on health IT efforts