Scleroderma Foundation Case Study - May 20 - NESHCO

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This presentation was given in May 2013 to the New England Society of Healthcare Communicators at their annual conference in Rhode Island.

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  • Welcome and thank you for attending this session…
  • This presentation will be available on SlideShare as well as on the flash drives provided to you by NESHCo. If you need to contact me in the future, here is my information.We will have a few minutes at the end of the session to go over some questions. Now, let’s get started!
  • In this session, we are going to be covering a lot of information in a short period of time. So, don’t hesitate to come back and view the slide deck to review something that you were unsure about.We will go over the following:How your online relationships can help increase awareness and media interest about your organizationTactics to build a loyal group of followers and further engage your online communitiesMeasuring the reach of your community's conversations
  • Facebook data (as of March 2013) -- 86.7% female vs 12.6% male
  • Inspire results: March 2013 -- 83.1% female vs. 12.5% male vs. 4.3% hidden
  • Just a break for a cute animal photoLet’s take a quick mental break. Here’s a cute photo of my doggie Dakota. This is his “What-is-Mommy-doing-face”?
  • Our theme for the entire campaign was “I.AM. SCLERODERMA.” While some patients were very adamant that they didn’t like the theme, it did cause people to discuss the disease with others. Our hope with the theme was to have people understand that a person is more than their disease. That the family members, friends, caregivers, health professionals, researchers – all of those people who are connected with the disease make up scleroderma. Not just the person who is diagnosed with it. We received a variety of pieces of artwork from people of all different ages across the country. Here are just a few of my personal favorites…
  • The idea for this contest came from one we had previously done for our annual holiday card. We generally have that open to children so we wanted to give people of all ages the chance to take part in a creative contest.
  • In the end, we decided that all of the finalists from the sclerodoodle contest would have their artwork appear on special apparel. Rare Disease Day is held each year in March and led by NORD – the National Organization of Rare Diseases. In 2012, they created an online store with special awareness merchandise. This was our a-ha moment for our annual awareness campaign. We created an online store for free using CafePress. This helped us manage the costs and staff time for having to manage inventory as well as a wide array of sizes for apparel. We also didn’t have to accrue any of the postage costs. We were able to select how much we wanted to charge for the items, resulting in a portion of each purchase coming back to the Foundation to help our programs and services.
  • In addition to the merchandise that featured the sclerodoodle finalists, we also created some other apparel items that included a branded 2012 tag cloud for awareness month. We also created a highly-popular “Ask Me About Scleroderma” logo that people really enjoyed because it helped spark questions and conversations with strangers. We also had items for children, baby onesies, bags and water bottles, and even stuffed animals and shirts for dogs.
  • One final doggie pic before we head into this last section of the session…
  • If you can only take away three or four pieces of information from this workshop, these are it.
  • Here are some other websites that can help you with using social media to connect with your community:
  • Let’s take a few quick questions.Say goodbye and thank you for attending!
  • Scleroderma Foundation Case Study - May 20 - NESHCO

    1. 1. Monday, May 20, 2013Christina RelacionCommunications Managercrelacion@scleroderma.orgwww.scleroderma.orgUSING SOCIAL MEDIA TOHARVEST NEW VOICES:SCLERODERMA FOUNDATION CASE STUDY
    2. 2. Slides are available on SlideSharewww.slideshare.net/crelacionContact: crelacion@scleroderma.orgFollow me @crelacion@sclerodermawww.scleroderma.orgHOUSEKEEPING ITEMS
    3. 3. In this session, you will learn:How your online relationships can help increaseawareness and media interest about yourorganizationTactics to build a loyal group of followers andfurther engage your online communitiesMeasuring the reach of your communitysconversationsWORKSHOP OBJECTIVES
    4. 4. Scleroderma, or systemic sclerosis, is a chronicdisease classified as autoimmune rheumaticThe word “sclero” in Greek means “hard,” andthe word “derma” in Latin means “skin”A person’s autoimmune system causes anoverproduction of collagenAffects about 300,000 AmericansMostly women between ages of 25-55WHAT IS SCLERODERMA?Source: “Understanding and Managing Scleroderma,” Maureen D. Mayes, M.D.,M.P.H.; and Khanh T. Ho, M.D., published by the Scleroderma Foundation, 2012.
    5. 5. 24 chapters and 150 support groups in the U.S.Leading nonprofit supporter of sclerodermaresearch fundingPatient support hotline to help answerpatient/caregiver calls or emailsLargest national conference for patienteducation about the diseaseWorks to educate and create public awarenessof the diseaseWHAT DOES THESCLERODERMA FOUNDATION DO?
    6. 6. For more than 20 years, the SclerodermaFoundation has recognized June as SclerodermaAwareness MonthFor our organization, we hold more than 40+special awareness events during the monthJune 29 is World Scleroderma Awareness DaySwiss artist Paul Klee died on June 29, 1940Work was highly influenced by his sclerodermaexperienceJUNE: SCLERODERMA AWARENESS MONTH
    7. 7. 1. Increase the awareness about scleroderma – what is thedisease, who does it affect, etc.2. Increase awareness of “Stepping Out for Scleroderma”events in 2012.3. Increase awareness of the Scleroderma Research andAwareness Act in Congress4. Increase fundraising for the Foundation and its chapters5. Successfully pitch to national-level media6. Successfully implement a social campaignOUR GOALS FOR THIS CAMPAIGN
    8. 8. Small staff in our National Office10 full-time3 part-timeHard to maintain consistent messaging/brandingwith our chapters and support groupsOrganization doesn’t work with a PR firm formedia assistanceVery limited budget on a national and local levelWebsite is outdated and hard to navigateOUR AWARENESS CHALLENGES
    9. 9. WHERE CAN YOU FIND THESCLERODERMA FOUNDATION ONLINE?
    10. 10. 0%10%20%30%40%50%60%70%80%90%Women Men65+55-6435-5418-3413-17WHAT WE KNOW ABOUT OUR AUDIENCESource: Facebook data, March 2013
    11. 11. 0%10%20%30%40%50%60%70%80%90%Women Men Hidden65+55-6435-5418-34Under 18WHAT WE KNOW ABOUT OUR AUDIENCESource: Inspire Discussion Board data, March 2013
    12. 12. Sclerodermacommunity is highlysavvy with socialmediaVery vocal in onlinecommunitiesWants their voice tobe heardOther sclerodermaorgs view us asthought leader in newmediaOTHER THINGS WE KNOW…
    13. 13. BREAK: RANDOM CUTE ANIMAL PHOTO
    14. 14. Created the first microsite for SclerodermaAwareness Month (www.sclerodermaawareness.org)Templates for our chapter and support groupleaders to ensure messaging remained consistentmedia alert | press release templatese-newsletter copy | fact sheetsTwitter/Facebook messagesShareable downloads for our supportersWorked w/ our celebrity spokespeople (JasonAlexander, Kellie Martin and Chris Harrison) toleverage their social networksWHAT DID WE DO FOR OUR CAMPAIGN?
    15. 15. MICROSITEWWW.SCLERODERMAAWARENESS.ORG
    16. 16.  User-created content forour microsite Easily repurposed forother vehicles Weekly e-newsletter Quarterly membermagazine Highly shareable contentfor social media Found new advocates totell his/her story toCongressTELL YOUR STORY:BECOME A SCLERODERMA CHAMPION
    17. 17. SCLERODOODLE CONTEST
    18. 18.  Grand prize >> trip toNational Patient EducationConference in Dallas Profile in our quarterlymember magazine Provided excellent visualsto share someone’spersonal journey w/ thedisease Art is therapeutic for thoseliving w/ chronic illnessMORE ABOUT SCLERODOODLES
    19. 19. www.cafepress.com/sclerodermafoundationCAFÉ PRESS ONLINE STORE
    20. 20. OTHER ITEMS AVAILABLE
    21. 21. DOWNLOADS Icons to share on socialmedia including icons andcover images (“flair”) Fact sheet aboutscleroderma Talking points to easilyhave a conversation(“elevator pitch”) Sample Facebook/Twittermessages
    22. 22. ANOTHER RANDOM DOGGIE PIC
    23. 23. WHAT WORKED & WHAT DIDN’T WORK*Campaign microsite*Easy to share*User-submitted content*Contest voting*Chapter & support groupadoption of campaign
    24. 24. HOW DID WE MEASURE OUR SUCCESS?
    25. 25. ADD THISFree embeddable widget, uses HTMLShare content on 300+ social networking sitesHelps boost traffic to your websiteAnalytics show shares, clicks and other engagement inreal-timeTech Term DefinedWidget: A program that performs a simple function, such as providing aweather report. Can be accessed by a user’s computer or mobile device.
    26. 26. Free to setupMeasure how long someone is on your site,where they are from, how did they find your siteand much moreCan create action funnels – see if a personcompletes a specific action (i.e. makes apurchase or completes a survey)GOOGLE ANALYTICS
    27. 27. Find out howengaged yourfollowers areView the reachof your contentLearn user’s ageand genderDiscover whatposts/topics aremost popularFACEBOOK INSIGHTS
    28. 28. OTHER WAYS WE MEASURED
    29. 29. Limited resourcesdon’t mean you can’trun a successfulcampaignProvide a high-valueincentive for peopleto share their storyUser-submittedcontent is highlyshareableMake it easy forusers to share yourcontentKEY TAKEAWAYS
    30. 30. ADDITIONAL RESOURCES “101 Social Media Tactics for Nonprofits” by Melanie Mathosand Chad Norman, John Wiley & Sons Inc. (2012) Sign up for email newsletters from JD Lasica and Socialbrite(www.socialbrite.org) Freebies/online training by Kivi Leroux Miller(www.nonprofitmarketingguide.com) Networking, learning events byyour local Social Media Club chapter(www.socialmediaclub.org)
    31. 31. Q&AQuestions?

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