Question: What motivates you, or would motivate you, to participate in online surveys or interviews (healthcare market research opportunities)? Pick your top 3 responses.​

• I want to  share my experiences to help others who are newly diagnosed or navigating the same things as me. 73% of respondents chose this answer

• I like knowing my input could be used to help determine how new medicine is developed or delivered.  67% of respondents chose this answer

• I want to earn extra money for sharing my experiences. 53% of respondents chose this answer

• Participating in research is a way I can be proactive with my situation. 50% of respondents chose this answer

• Being a part of the healthcare community and the potential to gain new insights about the disease or care is important to me. 47% of respondents chose this answer

• Other: 1% of respondents chose this answer

 

Question: Where do you find yourself connecting with others living with the same diagnosis as you? If you are a caregiver, where do you find yourself connecting with other caregivers? (Check all that apply)​

• Facebook: 62% of respondents chose this answer

• Online support groups through patient support organizations: 40% of respondents chose this answer

• In-person support groups: 20% of respondents chose this answer

• Online support groups through my doctor or hospital: 14% of respondents chose this answer

• Reddit: 11% of respondents chose this answer

• Other: 12% of respondents chose this answer

Question: How do you stay up-to-date on information about your illness? If you are a caregiver, how do you stay up-to-date about the illness of the person you care for? (Check all that apply)​

• Healthcare provider: 69% of respondents chose this answer

• Patient advocacy and support groups: 60% of respondents chose this answer

• Online patient forums (e.g. Reddit, Facebook groups, etc.): 51% of respondents chose this answer

• Medical journal websites: 14% of respondents chose this answer

• General social media (Facebook, Instagram, Tik Tok): 27% of respondents chose this answer

• News/media coverage: 22% of respondents chose this answer

• Friends and family: 14% of respondents chose this answer

• Other:  9% of respondents chose this answer

 

Question: What type of information/resources are most valuable to you? (Check all that apply)​

• Treatment options and advancements: 83% of respondents chose this answer

• New research or medical breakthroughs: 70% of respondents chose this answer

• Clinical trials and experimental treatments: 55% of respondents chose this answer

• Managing side effects of treatments: 53% of respondents chose this answer

• Coping strategies for daily living: 48% of respondents chose this answer

• Emotional and mental health support: 43% of respondents chose this answer

• Dietary or lifestyle changes that may help: 43% of respondents chose this answer

• Resources for financial assistance: 35% of respondents chose this answer

 

Question: On a scale of 1 to 10, (10 being the most), how well do you think the following groups understand your experience and/or that of your loved one?
Below are the answers ranked in order from most to least based on an average of all responses.​

• Others living with the same illness: 8.91

• Advocacy groups: 8.09

• Healthcare providers: 7.09

• Medical researchers: 6.82

• Pharmaceutical manufacturers: 5.36

• Pharmaceutical marketers: 4.79

 

Question: We know there can be challenges with navigating the diagnosis and treatment options for both chronic and acute medical conditions.
Below are the answers ranked in order from most to least based on an average of all responses.

• Balancing work/life responsibilities along with managing a health condition: 6.79

• Emotional or mental health challenges: 6.59

• Financial burden or cost of treatment: 6.28

• Difficulty navigating insurance or healthcare systems: 6.19

• Managing side effects of treatments: 5.94

• Access to appropriate care or specialists: 5.81

• Lack of information or resources: 5.7

• Lack of support from healthcare providers: 5.22

• Adherence to medication or treatment plans: 4.42