Neurofibromatosis Social Media Trends

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Healthcare market research and strategic advisory firm Manhattan Research, and online patient community network Inspire, in alliance with patient advocacy organization Neurofibromatosis Network, partnered on a study to explore the role of social media in the lives of neurofibromatosis patient and caregivers.

The study was conducted online among 161 patients and 57 caregivers from the Inspire/Neurofibromatosis Network’s Support Community in Q2 2012. See below for an Inforgraphic and presentation from the study.

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Neurofibromatosis Social Media Trends

  1. 1. Neurofibromatosis Social Media Trends February 2013 A study from:Unauthorized use, redistribution and reproduction are strictly prohibited without express written permission from Manhattan Research, LLCCopyright © 2013 Manhattan Research, LLC. All rights reserved.
  2. 2. Neurofibromatosis Social Media TrendsResearch Methodology and Info on Neurofibromatosis Healthcare market research and strategic advisory firm Manhattan Research, and online patient community network Inspire, in alliance with patient advocacy organization Neurofibromatosis Network, partnered on a study to explore the role of social media in the lives of neurofibromatosis patient and caregivers. About the study The study was conducted online among 161 patients and 57 caregivers from the Inspire/Neurofibromatosis Network’s Support Community (http://www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012. Neurofibromatosis (NF) is an incurable genetic disorder of the nervous AboutCOMPANY CONFIDENTIAL system which causes tumors to form on the nerves anywhere in the body atNeurofibromatosis any time. NF is one of the most common genetic disorders in the United States, affecting more than 100,000 Americans.
  3. 3. Overview of Surveyed Respondents Which best describes you? What is your gender? 11% 29% I have 74% neurofibromatosis Male Female 89% 70% I care for someone with 26% neurofibromatosis NF Patients NF Caregivers N/A - 1% Source: Neurofibromatosis Social Media Trends3
  4. 4. Overview of Surveyed Respondents What is your age? How severe is your neurofibromatosis, or that of the person you care for? Under 18 1% 24% 19 to 24 8% 25 to 34 25% Mild Moderate 49% 35 to 44 15% Severe Not sure 45 to 54 25% 55 to 64 20% 14% 65 or 12% 2% older NF Patients N/A - 4% N/A - 1% Source: Neurofibromatosis Social Media Trends4
  5. 5. NF Patients Use NF-related Social Media for Info Gathering More than Emotional Support Which of the following reasons describe why you use online communities, social networks, message boards, or blogs related to neurofibromatosis? I wanted to read how others have managed a 63% condition or treatment regimen I think others can give me tips and ideas I cannot 52% find elsewhere I wanted to find differing opinions about a health “We can share the 47% issue or treatment option research we each have been doing in our search I wanted to connect with others for emotional support 44% for a cure for NF. Even if such cure has not been found yet, the fact that I wanted to see how other people rate or review a 22% there are so many of us prescription drug with NF that are not I came across these websites when I am using a willing to give up in 17% this search is search engine encouraging!” - Female NF Patient, 55 Other 7% Source: Neurofibromatosis Social Media Trends5
  6. 6. Patients with Moderate-to-severe NF Use Community for Wide Variety of Reasons; Much More Likely to Seek Others’ Opinions on Rx drugs Which of the following reasons describe why you use online communities, social networks, message boards, or blogs related to neurofibromatosis? I wanted to read how others have managed a 69% condition or treatment regimen 47% I think others can give me tips and ideas I 57% cannot find elsewhere 29% I wanted to find differing opinions about a 52% health issue or treatment option 32% I wanted to connect with others for emotional 50% support 29% I wanted to see how other people rate or 30% review a prescription drug 5% Mod-sev NF Patients* 18% Mild NF Patients** I came across these websites when I am using a search engine 24% 9% Other 5% * Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis. ** Patients who have been diagnosed with mild neurofibromatosis. Source: Neurofibromatosis Social Media Trends6
  7. 7. Caregivers Fully Engaged in Supporting The Person They Care for Which of the following things do you do for the person you care for who has neurofibromatosis? Take them to medical appointments 93% Look up information and resources for 91% their support Track their condition and/or medical data 88% “I use these sites, such as Mayo Clinic, to keep informed about clinical Make sure they are taking their trials, drugs, and medication(s), as applicable, according 60% supplements of to doctors recommendations interest. I also look to see what, as situations evolve, we might expect in Other 26% terms of our sons prognosis.” - Female NF Caregiver, 38 Among caregivers Source: Neurofibromatosis Social Media Trends7
  8. 8. Search, General Health Sites, And Patient Advocacy Sites Lead Online Sources of NF Info for NF Patients Which of the following types of websites did you visit for health and treatment information related to neurofibromatosis in the past 12 months? Search engine 46% General health website 28% Patient advocacy website 25% Government website 19% Clinic or hospital website - local or… 19% Disease or condition website 17% Health channel of portal website 5% Health section of news website 4% “Online communities show me what others Health insurance website 4% are going through, they help keep me updated on current NF1 topics, and also Prescription drug website 3% provide a place for me to release my feelings Pharmacy website 2% with like-minded people.” Pharmaceutical corporate website 1% - Male NF1 Patient, 28 Other 4% None of the above 20% Source: Neurofibromatosis Social Media Trends8
  9. 9. Nearly All NF Patients Surveyed Belong to at Least One NF Online Community; Only Three-quarters Use Them Regularly How many online communities or networks do you How many online communities or networks do you belong to for information and support related to regularly use (e.g., visit at least several times per month) neurofibromatosis? for information and support related to neurofibromatosis? 24% 55% One 41% None One Two or more Two or more 41% 31% NF Patients NF Patients N/A - 4% N/A - 4% Source: Neurofibromatosis Social Media Trends9
  10. 10. More than Half of NF Patients Use NF-related Social Media at Least Once per Week How often do you use online communities, social networks, message boards, or blogs for information and support related to neurofibromatosis? Several times per day 13% About once a day 18% Several times per 11% week About once per week 11% A few times a month 20% About once per 4% month “Having contact with other people that A few times per year have a rare disorder like NF2 gets one 12% out of isolation. I dont know anyone in About once per year 2% my area that has NF2. Now I virtually know many others who have similar Never 5% problems and experiences.” - Female NF Patient, 49 Source: Neurofibromatosis Social Media Trends10
  11. 11. NF Patients over Age 45 Are More Likely to Use Social Media at Least Weekly How often do you use online communities, social networks, message boards, or blogs for information and support related to neurofibromatosis? 13% Several times per day 14% 10% About once a day 27% Several times per 11% week 12% NF Patients <44 15% NF Patients 45+ About once per week 8% 26% A few times a month 16% About once per 5% month 3% 11% A few times per year 13% 3% At least weekly About once per year 3% Patients <44: 49% 6% Never 4% Patients 45+: 61% Source: Neurofibromatosis Social Media Trends11
  12. 12. NF Patients And Caregivers Are Consistent And Long-term Users of NF Online Communities Thinking of your use of online communities and networks for information and support related to neurofibromatosis, which statement best describes you? After I initially sign up for a community... 39% I use it regularly on a long-term basis 46% I use it regularly for a few weeks but then 24% stop or only use it rarely 12% 10% NF Patients I only use it when a medical situation occurs NF Caregivers 18% 15% I rarely return to use it 14% 7% Other 7% Source: Neurofibromatosis Social Media Trends12
  13. 13. NF Patients over Age 45 Are Loyal Community Users Post Sign-up Thinking of your use of online communities and networks for information and support related to neurofibromatosis, which statement best describes you? After I initially sign up for a community... 28% I use it regularly on a long-term basis 53% I use it regularly for a few weeks but then 38% stop or only use it rarely 12% 15% NF Patients <44 I only use it when a medical situation occurs 5% NF Patients 45+ 13% I rarely return to use it 18% 6% Other 8% Source: Neurofibromatosis Social Media Trends13
  14. 14. NF Patients under Age 44 Have Strongest Support from Family And Friends When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I care for, I have lots of support from my family and friends. Top 2 Agree 43% 25% Strongly agree 29% 21% 25% 30% 68% Agree 55% 26% 42% 14% Neither agree nor 22% NF Patients <44 NF Patients 45+ disagree 13% NF Patients <44 16% NF Patients 45+ 8% NF Caregivers <44 10% Disagree NF Caregivers 45+ 11% 55% 63% 16% 4% 4% NF Patients <44 N/A – 6% Strongly disagree 5% NF Patients 45+ N/A – 9% NF Caregivers <44NF Caregivers 45+ NF Caregivers <44 N/A – 16% NF Caregivers 45+ N/A – 5% Source: Neurofibromatosis Social Media Trends14
  15. 15. Patients with Moderate-to-severe NF More Likely to Report Online Communities Are An Essential Resource When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I care, online communities and social networks are an essential resource to me. Top 2 Agree 16% 25% 32% Strongly agree 36% Agree Neither agree nor disagree Disagree 60% Strongly disagree 47% 29% 26% 3% 5% 5% 3% Mod-sev NF Patients* Mild NF Patients** Mod-sev NF Patients* NF Patients** Mild N/A – 5% N/A - 15% * Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis. ** Patients who have been diagnosed with mild neurofibromatosis. Source: Neurofibromatosis Social Media Trends15

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