Patient online communities not only reduce isolation and anxiety when faced with a life-changing diagnosis, they can also improve health outcomes. As Community Director of Mayo Clinic Connect, Colleen Young wanted to do more than connect patients. She involved the Mayo Clinic enterprise: providers, managers, communications specialists, researchers, and frontline staff; demonstrating how they can learn from and engage with the patient community to: Improve health care and service delivery Discover champions Increase brand loyalty Educate health care providers Co-create patient education Change poor health behaviors Advance science You’ll learn how you can excite internal stakeholders up, down, and across your organization to recognize the value of the community and understand how they can harness it to help them do their work better. Thriving communities get stuff done.

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Mayo Clinic Connect changes
health care and advances science
Colleen Young | MCSMN Webinar | January 17, 2019

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Discover how a thriving community can:
▪ Change health behaviors
▪ Discover and equip champions
▪ Improve health care and service delivery
▪ Inform and instruct health care providers
▪ Co-create patient education
▪ Advance science

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“A group of people who share a strong common
interest, form relationships and interact online.”
~Richard Millington
What is an online community?
@colleen_young
Photo: https://flic.kr/p/rSCbtk

5. @colleen_young@colleen_youngconnect.mayoclinic.org

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GOAL
IMPROVE HEALTH AND WELLBEING OF MEMBERS
(self-management, self-advocacy, recovery, etc.)
Objectives
Get members to set goals
for improved self-management
and recovery, and to share progress
Get top members (those who have
been there) to respond, encourage and
share their experiences
Strategies
Make members
feel proud as they
improve, show
progress and achieve
goals.
Make members
feel accepted
to come back to the
community if they
have a setback.
Make members
feel joy in
giving back to help
others.
Make members
feel confident they have
useful experience and
expertise to share.
Strategic Community Management

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Results: Steady Growth, Increased Activity

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CHANGE HEALTH BEHAVIORS

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It’s a huge help to have this group to
direct us through the maze.
As I am reading it is encouraging to see
how positive the post transplant
graduates are. There is hope.
Yes, because of your response, I asked
questions and felt comfortable with the
answers. Two thumbs up the procedure was done
after 12 p.m., waiting for the results. It wasn’t bad as
I thought it would be.
Hearing about how you are making healthy
changes in your life is very inspiring. I know I'm
not able to do all the things you are doing, but I
am feeling like I can begin to do more than I am.
Your story helps me dream bigger.
We feel much better about our level
of understanding of all this and are
hopeful that a more proactive
approach on our part will benefit us.
Being in this group is a big part
of being proactive.
Members Say

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HELPER
• Posts questions
• Shares experiences
• Replies to other members, offers support
Participates, learns and supports
INFO SEEKER
• Posts question(s)
• Seeks answers and support
Participates and learns
OBSERVER
• Reads
• Follows
• Likes
Follows and learns
MENTOR
• Welcomes and checks on members encourages participation
• Connects people, develops relationships and creates topical discussions
• Is rewarded
Regularly posts, learns, supports, teaches
Behaviorchange
Evolving Behaviors and Change

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Meet @RetiredTeacher

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GOAL
IMPROVE HEALTH AND WELLBEING OF MEMBERS
(self-management, self-advocacy, recovery, etc.)
Objectives
Get members to set goals for
improved self-management and
recovery, and to share progress
Get top members (those who have been
there) to respond, encourage and share
their experiences
Strategies
Make members
feel proud as they
improve, show
progress and achieve
goals.
Make members
feel accepted
to come back to the
community if they
have a setback.
Make members
feel joy in
giving back to help
others.
Make members
feel confident they have
useful experience and
expertise to share.
Tactics
Use gamification
(badges and roles)
for members to set
targets and report
progress.
Ensure every post
gets a response,
connect members
and build a sense of
belonging and give
confidence.
Build the volunteer
mentor program.
Reward those who give
back and inspire others
to follow.
Recognize unique
qualities of the
superusers and show
how they can contribute
to the group.
Strategic Community Management

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How Moderators Strategically Model Behavior

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Extrinsic Motivation

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Volunteer Mentors
Moderators
Mayo Clinic CONNECTors

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19. @colleen_youngAnnual Mentor & Moderator Meetup

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EQUIP YOUR CHAMPIONS
Increase brand loyalty

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IMPROVE PATIENT EXPERIENCE
Make health care and service delivery better

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Improving Patient Experience with Members

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EpilepsyMonitoringUnit
PatientPersona

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Kern Center for the Science of Health Care Delivery
(I&D) wanted to target large number of medical travelers.
Objective
• Learn about air travel preferences, medical needs
during travel and food preferences while traveling.
• Compare their air travel preferences with business and
leisure travelers.
Outcome & what we learned
• 505 respondents
• Traveling for medical reasons represents a small
population (~14%)
• Targeted planning for medical travel is lacking
Benefits of Mayo Clinic Connect for concept testing
• Reach and target
• Extremely helpful and proactive partnering
• Moderator support
Rochester Airport Experience Project

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CO-CREATE PATIENT RESOURCES
For patients by patients

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Expert
Q&As

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Pages

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Content from Community Conversations

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User Testing with Members

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TEACH HEALTH CARE PROVIDERS
Through the patient experience & conversation

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Experts by Experience & KT
The Little Voice in my Head:
Escaping My Biggest Enemy
by: Alisha Bridges
The Choice & Challenge of
Being “Good Enough:” A Caregiving Story
by: Scott Phillips
Why You Should Embed Patient Stories
at the Heart of What You Do
by: Marie Ennis- O’Connor

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Global Participation

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Post ICU Syndrome

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CONTRIBUTE TO THE LITERATURE
Participatory Research

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TBI: A Community-based Pragmatic Clinic Trial
▪ Testing an integrated Medical and Resource
Facilitation Intervention after Traumatic Brain Injury
▪ Collaboration with the Minnesota Brain Injury
Alliance and Minnesota Department of Health
▪ 500 individuals with TBI, 500 family members and
their primary care providers
▪ Randomized to Usual Care or Remote Care
▪ Patients and families access to private TBI Group
on Mayo Clinic CONNECT

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Effective Moderation of Online Patient Communities
▪ Interviewed the director, two moderators, and ten
mentors
▪ Aim to uncover best community management
practices employed in a thriving online patient
community
▪ Findings will inform online patient community
designers and managers
H. Safadi, E. Karahanna, T. Skousen, C. Young, S. Safadi, Effective Moderation of Online
Patient Communities, PDW, International Conference On Information Systems 2018.

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“Telling the story of how Mayo Clinic Connect
became an indispensable community was
one of my favorite chapters and a great way
to end the book.”
Richard Millington, Feverbee.com

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Apply & Trust Best Practices of Community Management

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All these projects matter because they
▪ Strengthen community
▪ Sustain success
▪ Are replicable
▪ Incite innovation and creativity
▪ Discover purpose beyond the community’s mission
Providing you involve the community.

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Mayo Clinic Connect
connect.mayoclinic.org