neurofibromatosis social media trends -- a medicine 2.0 presentation

NEUROFIBROMATOSIS SOCIAL MEDIA TRENDSBrian Loew

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PARTNERS IN RARE AND GENETIC DISEASE

Neurofibromatosis (NF) is an incurable genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. NF is one of the most common genetic disorders in the United States, affecting more than 100,000 Americans.

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(www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012.

NEUROFIBROMATOSIS SOCIAL MEDIA TRENDSRESEARCH METHODOLOGY AND INFO ON NEUROFIBROMATOSIS

About Neurofibromatosis

About the study

WHAT IS YOUR GENDER?WHICH BEST DESCRIBES YOU?

74%

26%I have neurofibromatosis

Source: Neurofibromatosis Social Media Trends

MALEFEMALEN

FP

ati

en

ts

NF

Care

giv

ers

71% 89%

29% 11%

Overview of Surveyed Respondents

Overview of Surveyed Respondents

HOW SEVERE IS YOUR NEUROFIBROMATOSIS, OR THAT OF THE PERSON YOU CARE FOR?

WHAT IS YOUR AGE?

Under 18

19 to 24

25 to 34

35 to 44

45 to 54

55 to 64

65 to older

1%

NF Patients

25%

15%

25%

20%

2%


Mild

Moderate

Severe

Not Sure

24%

49%

14%

12%

WHICH OF THE FOLLOWING REASONS DESCRIBE WHY YOU USE ONLINE COMMUNITIES, SOCIAL NETWORKS, MESSAGE BOARDS, OR BLOGS RELATED TO NEUROFIBROMATOSIS?

“We can share the research we each have been doing in our search for a cure for NF. Even if such cure has not been found yet, the fact that there are so many of us with NF that are not willing to give up in this search is encouraging!”

- Female NF Patient, 55

NF Patients Use NF-related Social Media for Info Gathering More than Emotional Support

I wanted to read how others have managed a condition or treatment regimen

I think others can give me tips and ideas I cannot find elsewhere

I wanted to find differing opinions about a health issue or treatment option

I wanted to connect with others for emotional support

I wanted to see how other people rate or review a prescription drug

I came across these websites when I am using a search engine

Other


63%52%47%44%22%17%7%

WHICH OF THE FOLLOWING REASONS DESCRIBE WHY YOU USE ONLINE COMMUNITIES, SOCIAL NETWORKS, MESSAGE BOARDS, OR BLOGS RELATED TO NEUROFIBROMATOSIS?

* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.** Patients who have been diagnosed with mild neurofibromatosis.

Patients with Moderate-to-severe NF Use Community for Wide Variety of Reasons; Much More Likely to Seek Others’ Opinions on Rx drugs

I wanted to read how others have managed a condition or treatment regimen

I think others can give me tips and ideas I cannot find elsewhere

I wanted to find differing opinions about a health issue or treatment option

I wanted to connect with others for emotional support

I wanted to see how other people rate or review a prescription drug

I came across these websites when I am using a search engine

Other


Mod-sev NF Patients*

Mild NF Patients**

69%

47%

57%

29%

52%

32%

50%

29%

30%

5%

18%

24%

9%

5%

WHICH OF THE FOLLOWING TYPES OF WEBSITES DID YOU VISIT FOR HEALTH AND TREATMENT INFORMATION RELATED TO NEUROFIBROMATOSIS IN THE PAST 12 MONTHS?

Search, General Health Sites, And Patient Advocacy Sites Lead Online Sources of NF Info for NF Patients

Search engine

General health website

Patient advocacy website

Government website

Clinic or hospital website - local or national

Disease or condition website

Health channel of portal website

Health section of news website

Prescription drug website

Pharmacy website

Pharmaceutical corporate website

Other

None of the above

Health insurance website

46%

28%

25%

19%

19%

17%

5%

4%

4%

3%

2%

1%

20%

4%

“Online communities show me what others are going through, they help keep me updated on current NF1 topics, and also provide a place for me to release my feelings with like-minded people.”

- Male NF1 Patient, 28


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...

NF Patients And Caregivers Are Consistent And Long-term Users of NF Online Communities


I use it regularly on a long-term basis

I use it regularly for a few weeks but then stop or only use it rarely

I only use it when a medical situation occurs

I rarely return to use it

Other

39%

46%

24%

12%

10%

18%

15%

14%

7%

7%NF Patients

NF Caregivers

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

NF Patients <44 N/A – 6%NF Patients 45+ N/A – 9%

NF Caregivers <44 N/A – 16% NF Caregivers 45+ N/A – 5%

NF Patients under Age 44 Have Strongest Support from Family And Friends


Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

NF Patients <44

NF Patients 45+

NF Caregivers <44

NF Caregivers 45+

43%

25%

29%

21%

25%

30%

26%

42%

8%

10%

11%

16%

4%

4%

5%

14%

22%

13%

16%

68% 55%

55% 63%

NF Patients <44

NF Patients 45+

NF Caregivers<44

NF Caregivers 45+

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.

* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.** Patients who have been diagnosed with mild neurofibromatosis.

TOP 2 AGREE

N/A – 5% N/A - 15%

Patients with Moderate-to-severe NF More Likely to Report Online Communities Are An Essential Resource


5%

3%

27%

38%

26%

4%

6%

34%

38%

19%

Mod-severe NF Patients*

Mild NF Patients**

Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

60% 47%

Mod-sevNF Patients*

Mild NFPatients**

* I use these sites, such as Mayo Clinic, to keep informed about clinical trials, drugs, and supplements of interest. I also look to see what, as situations evolve, we might expect in terms of our son's prognosis.

–Woman, 38, caregiver of son with NF

When you have NF, you feel like you are the only one in your hometown living with it. With these resources I would never know what if anything is being done to find a cure.

–Woman with NF, 54

When I am feeling down and upset, these communities give me hope and strength to continue on in my daily life and not to worry so much of what may or may not happen with NF

–Woman with NF, 26

* Online communities show me what others are going through, they help keep me updated on current NF1 topics, and also provide a place for me to release my feelings with like-minded people.

–Man with NF1, 28

* We can share the research we each have been doing in our search for a cure for NF. Even if such cure has not been found yet, the fact that there are so many of us with NF that are not

willing to give up in this search is encouraging! –Woman with NF, 55

They give me valuable information regarding what to expect and what to look for regarding my son’s medical issues. It also makes me not feel so isolated and gives me opportunity to make a network of support for my son in the future.

–Woman, 35, caregiver of son with NF

* It helps, knowing that I am not the only one going through the things I deal with. Sometimes I can help them feel better, and sometimes they can help me feel better.–Male with NF, 31

Benefits of community for patients and caregivers– especially those with rare and genetic diseases

Find emotional and practical support

Place to share their experiences and knowledge, and help themselves by helping others

Initiate and promote research

Find resources and high-quality information

neurofibromatosis social media trends -- a medicine 2.0 presentation

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