People Like Us: A New State of Mind

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People Like Us A New State of Mind
2009 Executive Leadership Conference
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The Power of People Like Us

• People Like Us
• Empower patients, family members, caregivers,
  donors, recipients to become strong, proactive
  advocates
• Educate and engage on issues related to CKD,
  donation and transplantation
• Encourage participation in the public policy
  process at the state and federal levels

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The Power of People Like Us

• Who Are People Like Us?
• NKF Constituents
• Patient and Family Council
• National Donor Family Council
• Living Donors
• Family members/caregivers
• Transplant games participants
• NKF Professionals
• Doctors, Nurses, Social Workers, Technicians,
  Dietitians, NKF Leadership

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People Like Us Empower, Educate, Encourage -
themselves and others

• People Like Us advocates
• Communicate their questions and concerns
• Talk to healthcare team
• Share with others like themselves
• Engage
• Media, their community
• Influence
• Public Policy (part, not ALL of advocacy)

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Turn on the Power of People Like Us

• Divisions/Affiliates challenges preventing
  adapting People Like Us activities
• Short staffed
• Too Expensive
• Complicated
• Overwhelming

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The Power of People Like Us

• OVERCOMING YOUR CHALLENGES WITH
• PEOPLE LIKE US
• Short staffed (INCORPORATE INTO EXISTING
  ACTIVITIES)
• Too Expensive (MINIMAL COSTS/MAXIMUM BENEFITS AND
  FUNDRAISING OPPORTUNITIES)
• Complicated (SIMPLIFIED SYSTEM)
• Overwhelming (ONE STEP AT A TIME)

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The Power of People Like Us

• Example 1 (FREE!)
• Encourage/enable people to share their personal
  story, support and connect with each other
  through existing NKF resources
• Join Constituent Councils/Share stories via Web
  sites
• www.nkfkidneypatients.org (PFC)
  www.donorfamily.org (NDFC)
• www.transplantrecipients.org (transAction)
  www.livingdonors.org
• Online message boards/discussions
  www.kidney.org/patients/mboards.cfm
• Connect with others through the NKFs Facebook
  page at www.facebook.com

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Turn on the Power of People Like Us

• Example 2 Patient-led Support Groups Coffee
  House Conversations - www.kidney.org/coffeehouse
• As patients become educated and empowered, they
  are encouraged and able to help support their
  peers
• Peer-led support is extremely effective/sought-aft
  er model
• Promote national calls (listsevs, mailings, etc.)
  (no cost, minimal staff)
• Provide training, resources, curriculum and a
  format to organize and host peer support
  telephone calls/live groups events locally
  (funding opportunity)

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The Power of People Like Us

• EXAMPLE 3 Local Educational seminars
• ?Include People Like Us speakers (when
  available)
• ? Change title of program (marketing)
• ? Add empowering messages i.e. patient IS the
  most important member of the healthcare team!
• Include information about working with your
  healthcare team (list of questions to ask, etc.)
• Promote Coffee House Conversations
• ? Provide information about involvement in public
  policy by signing up for the Take Action Network

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The Power of People Like Us!

• OTHER EXAMPLES - Divisions/Affiliates can adopt
  advocacy components/messaging into
• EXISTING, day-to-day activities
• KEEP, Kidney Walk, Golf participants
• -Promote People Like Us Take Action network
  sign-up
• Publications
• -Involve advocates in content review/update
  process
• Media Outreach
• -Offer People Like Us advocates to media for
  story ideas
• Speakers Bureau
• -Include People Like Us advocates on list of
  speakers for local programs

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The Power of People Like Us

• Identifying/Recruiting potential People Like Us
  patient advocates
• Leadership qualities
• Passionate
• Exceptional verbal and/or written communication
  skills
• Unique and compelling personal stories

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The Power of People Like Us

• Identifying/Recruiting potential People Like Us
  advocates
• (specifically for Washington, DC Fly-In program)
• Knowledge/interest in public policy process
  and/or issues
• Commitment to long-term involvement
• Ability to travel
• Understanding of the bigger picture
• Willingness to participate in advocacy training
  exercises

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The Power of People Like Us

• People Like Us Advocacy Training-Capitol Hill
  Fly-in
• Advocates fly-in to Washington, DC for training
  and personal meetings/visits with their Members
  of Congress to raise awareness about kidney
  disease, donation, transplantation and related
  issues
• Held by many organizations
• 3-4 Fly-Ins annually most notably World
  Kidney Day (2nd Thursday of March)
• CAN BE DONE LOCALLY not everyone can come to
  Washington, D.C.

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Turn on the Power of People Like Us

• Growing People Like Us
• Strong foundation has been established
• Divisions/Affiliates are VITAL
• Brand Equity/Name Recognition-identify your
  grassroots advocacy activities as People Like
  Us
• People Like Us trainings/resources/support
• -Online training program for advocates
• -Train the Trainers Webinars for
  Affiliates/Divisions
• -National Staff can help organize, participate
  in local live training

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The Power of People Like Us

• ADVOCACY - Empowering, Educating, Encouraging
• RAISES AWARENESS
• INFLUENCES POLICY
• INCREASES SUPPORT/RESOURCES
• ATTRACTS DONORS
• HELPS PATIENTS AND STRENGTHENS YOUR
  ORGANIZATION!

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• Q How are your local programs and goals
  connected with advocacy?
• How can you/how have you incorporated People
  Like Us activities