A Survey In Conjunction with the Community Pain Center

As a person living with pain, your comments and insights are essential to help us to be able to provide you with the kind of information and help that will improve your quality of health!

The Community Pain Center (CPC) is in its final stages of development and when launched, will provide the pain community with an interactive, destination web platform, providing assistance never before offered to the pain community!

By taking part in the following survey, you can help insure that the CPC will be able to provide you with the tools and information you need to help you in your journey to improved health and less pain!
Participation in this survey is confidential and is only for the purpose of collecting your opinions.

On behalf of the Community Pain Center, we are grateful for
your interest and help!


OURCPC.COM

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Thank you from the CPC for taking the time to help out! 

<div style="text-align: left;"><span style="color: #0a8f8f;">Thank you from the CPC for taking the time to help out!&nbsp;</span></div>
Informed Consent

In order to participate in this research study, you must read and sign this informed consent document.

Investigator: National Fibromyalgia Association (NFA)

Study Title: Needs and Interests of the Fibromyalgia (FM) Community in the Offerings* of the Community Pain Center’s Social Media Pain Community “BNTouch”

*Offerings: Resources, programs, information, education, assistance, patient empowerment, cost reductions on products and services, and improved access to care through a destination, interactive web portal designed specifically for helping people with FM and other chronic pain conditions.

The NFA is asking you to participate in a research study. Please take your time to read the information below and feel free to ask any questions before signing this document.

Purpose: The purpose of the study is to invite people with FM to help the Community Pain Center (CPC), its Advisors and Managers, so they will be able to review the submitted comments and ideas from the community concerning the proposed services and opportunities that will be offered by the Community Pain Center (scheduled to launch in late July 2017). The CPC has been developing a one-stop-destination filled with information, assessment tools, resources and one-on-one assistance for people in pain, and wants to continue to improve its offerings, and make it meet the needs of the FM Community.  Your feedback and ideas will help us to make the CPC a unique and helpful resource to improve the health and symptoms of people living with chronic pain.

Procedures: You will be asked to complete a set of questions online after agreeing to participate in the study. There are a total of 39 questions that will require your response.

Risks to Participation: This study does not pose any risk to interested participants.

Compensation: No compensation will be provided in return for completing the survey.

Benefits to Participants: You will not directly benefit from this study. However, we hope the information learned from this study may benefit society in our understanding of how the offerings of the CPC will potentially reduce levels of pain and perceived stress in patients with fibromyalgia.

Alternatives to Participation: Participation in this study is voluntary. You may withdraw from study participation at any time without any penalty.
Confidentiality: During this study, information will be collected about you for the purpose of this research. This includes your demographics (this would be questions related to your age, gender, ethnicity, etc.). In order to maintain confidentiality during this study, your name will not be listed on any of the forms, as you will be given a participant number instead. All your information will be collected online through Survey Monkey, which will also be passcode protected. Research materials will be kept for a minimum of five years, so as to do a comparison with future research studies on the same subjects.

Questions/Concerns: If you have questions related to the procedures described in this document please contact Liz at (714) 624-1597.

In order to participate, you must complete the following two consent sections:

Consent to Participate in Research

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* 1. I have read the above information and have received satisfactory answers to my questions. I understand the research project and the procedures involved have been explained to me. I agree to participate in this study. My participation is voluntary.

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* 2.
Proof of Permission

When registering to participate in the NFA’s Research Study, I am authorizing the National Fibromyalgia Association, Community Health Focus, Inc. and the Community Pain Center the right to continue to send me notices by email, at the email address provided, in order to update me on the outcomes of the research, future research and all news and notices that will keep me apprised and make information available to me, until I decide that I no longer what to be contacted and opt out.

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* 3. Please indicate your sex.

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* 4. Please provide your birth date.

Date

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* 5. How many times a year do you see a healthcare provider for pain related concerns?

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* 6. How many times a year do you see a healthcare provider for general overall health concerns?

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* 7. Where do you get most of your information on pain specific topics?

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* 8. Would you use a service that can connect you by video with a healthcare provider in just minutes 24/7 ?

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* 9. How much out of pocket does it cost you for all pain related treatments per month?

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* 10. Have you ever used complementary treatments for your pain condition?
(Please chose as many as apply)

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* 11. What treatments provided you with some relief?
(Please chose as many as apply)

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* 12. Would you be more likely to use these therapies if they were covered by your insurer?

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* 13. Do you belong to a patient advocacy association or support group? If so which one(s)?

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* 14. Would you like to see the return of the printed magazine "Fibromyalgia AWARE"?

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* 15. Would you like to get the magazine for free when you pay for a membership that will entitle you to become a member of both the National Fibromyalgia Association and the Community Pain Center?

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* 16. Would you rather pay for the magazine separately?

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* 17. What type of device are you most likely to use while looking for information online?

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* 18. Do You like the idea of the CPC having sponsors to create more awareness of pain issues?

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* 19. Please select the conditions you have been diagnosed with.
(Select all that apply)

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* 20.

Would you like to see more videos like this one that can help you better manage your pain?

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#1 Social Media Services

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* 21. Who would you like to share your story with?
(click all that apply)

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* 22. Would you like to post your experiences or share your blog?

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* 23. Would you like to connect with others in pain?

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* 24. Would you like to "talk" with experts by phone or video conferencing?
(Healthcare Providers, Nurses, Patient Advocates, Life Coaches)

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* 25. How important is it for you to be a part of a supportive community of people dealing with pain?

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* 26. Are you interested in participating in grass roots activities to improve pain care and inform public policy?

The CPC would like to remind you that staying in one position aggravates pain, so take a short break and try some stretching!

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#2 Knowledge Resources (updated weekly)

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* 27. Do you have an interest in articles on the latest research into pain and its root causes?

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* 28. Would you participate in Forums and special interest group discussions?
(These would be two way conversations.)

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* 29. Would you watch videos from experts on pain and health topics?

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* 30.

Would you like to hear more from pain experts with information on cutting edge treatment research?

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* 31. Would you like articles from community members sharing their experiences with pain and related health topics?

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* 32. Would it be helpful to have a virtual vault to store your medical information (your doctors' names, medicines, dosages, medical records, etc.) to share with your healthcare providers?

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* 33. Would you read weekly blogs about living better despite pain?

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* 34. Would you like webinars with pain and health experts answering your questions live?

#3 Retail Resources

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* 35. Would you use a directory of pain care providers in your area?
(example: massage, acupuncture, yoga, hydrotherapy, etc.)

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* 36. Would you use a directory of advocacy and support group organizations?

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* 37. Would you like a service to give information on products for pain?
(with educational videos providing information about the product)

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* 38. Would you like unbiased educational videos providing pros and cons
of a specific pain product or treatment?

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* 39. Would you use a list of free healthcare services?

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* 40. What would you specifically like to see on a website that deals with  decreasing pain and improving your health?

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* 41. If a website offered all of these additional services in one place to its members, what would you be willing to pay for such a membership.

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You can visit the beta test site of the 
Community Pain Center (CPC) at:  

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* 42. If you would you like to hear how your opinion helped the pain community, sign up to get CPC news and updates delivered to your inbox. Please enter your email address here. (Your email will not be associated with any of your previous responses.)

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