Sickle Cell Disease Insight Survey

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In our ongoing work to empower Health Activists, we are holding Community Insight Groups - online focus groups - for people who are active contributors in the online Sickle Cell Disease community.

These groups will be held on Thursday, January 21st at Noon, 4pm, 6pm and 9pm Eastern Time.

Please note: These groups will take one hour and are held remotely. Participants can join from anywhere in the country, but will be required to be online and on the phone at the same time.

You will be contacted via email if you are a good match for this study. For additional information please contact us at services@wegohealth.com with any questions.

Participants in the Insight Group will receive a $25 Amazon.com gift certificate.

1. What phrases best represent who you are and your contributions to the online health community? (Check all that apply)

What phrases best represent who you are and your contributions to the online health community? (Check all that apply) I often research health care information for myself or for others.

People often come to me for health related advice.

I review and recommend health care content.

I contribute to multiple online health communities.

I am a health care advocate.

I am an active contribute to the online health community.

2. Approximately how often do you contribute to the online health community? (Including all forms of media—blogs, message boards, groups, question/answer sites, Twitter, etc.)

Approximately how often do you contribute to the online health community? (Including all forms of media—blogs, message boards, groups, question/answer sites, Twitter, etc.) Never

Once a month

Once a week

Once a day

Several times a day

3. Including all forms of media, how many different blogs, message boards, groups, question/answer sites, etc., do you PARTICIPATE in? Count each group separately (for example, Yahoo! Women’s Health Group and Yahoo! Nutrition & Diet Group is 2 groups; Twitter is 1 community, and each blog on which you comment counts as 1).

Including all forms of media, how many different blogs, message boards, groups, question/answer sites, etc., do you PARTICIPATE in? Count each group separately (for example, Yahoo! Women’s Health Group and Yahoo! Nutrition & Diet Group is 2 groups; Twitter is 1 community, and each blog on which you comment counts as 1).

4. Of all the forms of media above, how many do you ACTIVELY contribute to?

Of all the forms of media above, how many do you ACTIVELY contribute to?

5. To me, active contribution means contributing:

To me, active contribution means contributing: Multiple times a day

Daily

Weekly

Monthly

A few times a year

I don’t actively contribute

6. On average, how many people are members of the forums, community message boards, or online groups you belong to?

On average, how many people are members of the forums, community message boards, or online groups you belong to?

7. If you write or manage a blog or online journal (Blogger, MySpace, LiveJournal, CarePages websites), please estimate how many people read your blog every month. (NOTE: Your blog can cover any range of topics; it does not need to be only about health.)

If you write or manage a blog or online journal (Blogger, MySpace, LiveJournal, CarePages websites), please estimate how many people read your blog every month. (NOTE: Your blog can cover any range of topics; it does not need to be only about health.)

8. What is the URL of your primary blog? (Optional)

What is the URL of your primary blog? (Optional)

9. Do you participate in face to face (in person) Sickle Cell Disease groups or associations?

Do you participate in face to face (in person) Sickle Cell Disease groups or associations? Yes

10. I provide advice to others on how to manage or live with Sickle Cell Disease:

I provide advice to others on how to manage or live with Sickle Cell Disease: Often

Sometimes

Occasionally

Rarely

Never

11. I am aware of the risks to people with Sickle Cell Disease associated with multiple blood transfusions.

I am aware of the risks to people with Sickle Cell Disease associated with multiple blood transfusions. Strongly disagree

Disagree

Agree

Strongly Agree

No opinion

12. How knowledgeable are you about each of these Sickle Cell Disease management strategies, products and programs? (check one box per topic)

	Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Be Sickle Smart programs	How knowledgeable are you about each of these Sickle Cell Disease management strategies, products and programs? (check one box per topic) Be Sickle Smart programs Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Bone marrow transplant	Bone marrow transplant Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Chelation therapy	Chelation therapy Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Desferal	Desferal Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Exjade	Exjade Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Iron overload screening	Iron overload screening Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable
Serum ferritin screening	Serum ferritin screening Don’t Know Topic	Know of Topic	Somewhat Knowledgeable	Knowledgeable	Very Knowledgeable

13. If you feel you are knowledgeable about Sickle Cell Disease management strategies, products and programs, what are the sources of your knowledge? (check all that apply):

If you feel you are knowledgeable about Sickle Cell Disease management strategies, products and programs, what are the sources of your knowledge? (check all that apply): Personal experience

A friend or loved one’s experience

Interaction with others in the online Sickle Cell Disease community

Interaction offline with advocacy groups or local Sickle Cell Disease chapters

Offline research

Online research and Sickle Cell Disease content

Conversation with doctor

Conversation with other health professional

Attending conferences

Attending Sickle Cell community events

Other (please specify)

14. Based on what you know of these Sickle Cell Disease management strategies, products and programs, please give your overall impression (check one box per product):

	Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Be Sickle Smart programs	Based on what you know of these Sickle Cell Disease management strategies, products and programs, please give your overall impression (check one box per product): Be Sickle Smart programs Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Bone marrow transplant	Bone marrow transplant Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Chelation therapy	Chelation therapy Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Desferal	Desferal Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Exjade	Exjade Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Iron overload screening	Iron overload screening Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product
Serum ferritin screening	Serum ferritin screening Very Negative	Somewhat Negative	Neutral	Somewhat Positive	Very Positive	Don’t Know Product

15. If you feel positively about a strategy, product or program, what contributes to that impression? (check all that apply)

If you feel positively about a strategy, product or program, what contributes to that impression? (check all that apply) Personal experience

A friend or loved one’s experience

Interaction with others in the Sickle Cell Disease community

Interaction offline with advocacy groups or local Sickle Cell Disease chapters

Offline research

Online research and Sickle Cell Disease content

Conversation with doctor

Conversation with other health professional

Attending conferences

Visibility in the Sickle Cell Disease community

Advertising

Corporate image

Confidence in effectiveness of product

Knowledge of side effects

Knowledge that product is new

Other (please specify)

16. Based on what you know about these Sickle Cell Disease management strategies, products and programs, would you recommend them to others?

	Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Be Sickle Smart programs	Based on what you know about these Sickle Cell Disease management strategies, products and programs, would you recommend them to others? Be Sickle Smart programs Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Bone marrow transplant	Bone marrow transplant Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Chelation therapy	Chelation therapy Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Desferal	Desferal Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Exjade	Exjade Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Iron overload screening	Iron overload screening Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product
Serum ferritin screening	Serum ferritin screening Would Not Recommend	Unlikely to Recommend	Neutral	Might Recommend	Would Recommend	Don’t Know Product

17. How do you choose to recommend some Sickle Cell Disease management strategies, products and programs and not others? (check all that apply)

How do you choose to recommend some Sickle Cell Disease management strategies, products and programs and not others? (check all that apply) Personal experience

Word of mouth

A friend or loved one’s experience

Interaction with others in the Sickle Cell Disease community

Interaction offline with advocacy groups or local Sickle Cell Disease chapters

Offline research

Online research and Sickle Cell Disease content

Conversation with doctor

Conversation with other health professional

Attending conferences

Visibility in the Sickle Cell Disease community

Advertising

Corporate image

Confidence in effectiveness of product

Knowledge of side effects

Knowledge that product is new

Other (please specify)

18. Do you or someone you know have Sickle Cell Disease?

Do you or someone you know have Sickle Cell Disease? I have been diagnosed with Sickle Cell Disease

Someone I know has been diagnosed with Sickle Cell Disease

I would prefer not to answer

19. OPTIONAL: How would you describe yourself? (Please note, responses to these questions will only be viewed in aggregate and will not be viewed as criteria for participating in the Insight Session)

	Age	Gender	Ethnicity
Select one option from each column	OPTIONAL: How would you describe yourself? (Please note, responses to these questions will only be viewed in aggregate and will not be viewed as criteria for participating in the Insight Session) Select one option from each column Age	Gender	Ethnicity

20. OPTIONAL: How would you describe the backgrounds of MOST (not all) of the people who look to you for advice, information or support on Sickle Cell Disease? (Please note, responses to these questions will only be viewed in aggregate and will not be viewed as criteria for participating in the Insight Session)

	Age	Gender	Ethnicity
Select one option from each column	OPTIONAL: How would you describe the backgrounds of MOST (not all) of the people who look to you for advice, information or support on Sickle Cell Disease? (Please note, responses to these questions will only be viewed in aggregate and will not be viewed as criteria for participating in the Insight Session) Select one option from each column Age	Gender	Ethnicity

21. In the online health communities in which you are active, what is the overall perception of the companies and products that treat Sickle Cell Disease?

In the online health communities in which you are active, what is the overall perception of the companies and products that treat Sickle Cell Disease? Very Negative

Negative

Neutral

Positive

Very Positive

22. I like to give my opinion to companies about their products, marketing and online programs.

I like to give my opinion to companies about their products, marketing and online programs. Strongly disagree

Disagree

Agree

Strongly Agree

No opinion

23. Please enter your name, email address and phone number here if you would still like to be considered for the upcoming Community Insight Session.

We will contact you by phone for a brief follow up call if this group is appropriate for you.

Please enter your name, email address and phone number here if you would still like to be considered for the upcoming Community Insight Session. We will contact you by phone for a brief follow up call if this group is appropriate for you. Name (First name only is fine)
Email address
Phone number

24. Where do you participate online (specific health and Sickle Cell Disease websites you find most helpful, online communities, etc)?

Where do you participate online (specific health and Sickle Cell Disease websites you find most helpful, online communities, etc)?

25. OPTIONAL: Check this box if you would like us to notify you about other programs (including future focus groups), offers and content from WEGO Health:
(We'll never sell your email address and you can unsubscribe from mailings at any time)

OPTIONAL: Check this box if you would like us to notify you about other programs (including future focus groups), offers and content from WEGO Health: (We'll never sell your email address and you can unsubscribe from mailings at any time) Sign me up!

Sickle Cell Disease Insight Survey

1. What phrases best represent who you are and your contributions to the online health community? (Check all that apply)

2. Approximately how often do you contribute to the online health community? (Including all forms of media—blogs, message boards, groups, question/answer sites, Twitter, etc.)

4. Of all the forms of media above, how many do you ACTIVELY contribute to?

5. To me, active contribution means contributing:

6. On average, how many people are members of the forums, community message boards, or online groups you belong to?

7. If you write or manage a blog or online journal (Blogger, MySpace, LiveJournal, CarePages websites), please estimate how many people read your blog every month. (NOTE: Your blog can cover any range of topics; it does not need to be only about health.)

8. What is the URL of your primary blog? (Optional)

9. Do you participate in face to face (in person) Sickle Cell Disease groups or associations?

10. I provide advice to others on how to manage or live with Sickle Cell Disease:

11. I am aware of the risks to people with Sickle Cell Disease associated with multiple blood transfusions.

12. How knowledgeable are you about each of these Sickle Cell Disease management strategies, products and programs? (check one box per topic)

13. If you feel you are knowledgeable about Sickle Cell Disease management strategies, products and programs, what are the sources of your knowledge? (check all that apply):

14. Based on what you know of these Sickle Cell Disease management strategies, products and programs, please give your overall impression (check one box per product):

15. If you feel positively about a strategy, product or program, what contributes to that impression? (check all that apply)

16. Based on what you know about these Sickle Cell Disease management strategies, products and programs, would you recommend them to others?

17. How do you choose to recommend some Sickle Cell Disease management strategies, products and programs and not others? (check all that apply)

18. Do you or someone you know have Sickle Cell Disease?

19. OPTIONAL: How would you describe yourself? (Please note, responses to these questions will only be viewed in aggregate and will not be viewed as criteria for participating in the Insight Session)

21. In the online health communities in which you are active, what is the overall perception of the companies and products that treat Sickle Cell Disease?

22. I like to give my opinion to companies about their products, marketing and online programs.

23. Please enter your name, email address and phone number here if you would still like to be considered for the upcoming Community Insight Session. We will contact you by phone for a brief follow up call if this group is appropriate for you.

24. Where do you participate online (specific health and Sickle Cell Disease websites you find most helpful, online communities, etc)?

25. OPTIONAL: Check this box if you would like us to notify you about other programs (including future focus groups), offers and content from WEGO Health: (We'll never sell your email address and you can unsubscribe from mailings at any time)

23. Please enter your name, email address and phone number here if you would still like to be considered for the upcoming Community Insight Session.

We will contact you by phone for a brief follow up call if this group is appropriate for you.

25. OPTIONAL: Check this box if you would like us to notify you about other programs (including future focus groups), offers and content from WEGO Health:
(We'll never sell your email address and you can unsubscribe from mailings at any time)