February 2011

Dear Sir or Madam,

I am a graduate student in Speech-Language Pathology at Portland State University (PSU) in Portland, Oregon. For my Master's research project, I am conducting a survey of people with a history of head and neck cancer. The aims of this study are to: (A) learn about the information and communication needs of people with head and neck cancer, and (B) determine how medical institutions go about meeting those needs.

This survey is designed for people who are currently being treated or have been treated for head and neck cancer. You are receiving this invitation because of your participation with a support group for head and neck cancer. If this applies to you, I would like to invite you to participate in this study.

Your unique experiences with cancer treatment are important to research in patient care. With an understanding of patients' perspectives and experiences, medical professionals and researchers can better determine what factors lead to more comprehensive cancer care. However, there is no obligation for you to complete this survey; all responses are strictly voluntary. By completing this survey, you are consenting to voluntary participation.

There is minimal risk associated with completing this survey; if you experience any discomfort or distress due to the subject matter of this survey, you can refuse to answer any part of the survey or discontinue the survey. If you would like more information about this survey, you are welcome to contact me, or Andrew Palmer, a certified speech-language pathologist (SLP) at Oregon Health and Sciences University, who is a member of my research committee.

Sarah Sellevaag Email: [email protected]
Andrew Palmer Email: [email protected]
Phone: 503-494-2421
Toll-free: 1-800-222-6478 extension 2421.

The responses you provide to this survey will be summarized with those of other people with head and neck cancer. All responses will be treated anonymously so that identification of individuals is impossible, as approved by the PSU Institutional Review Board.

Completion of this survey should take no more than 30 minutes. Questions are multiple choice or fill-in-the-blank.

Here is the link to the survey: https://www.surveymonkey.com/s/XKQ8WPL

Thank you for taking the time to share your experiences and opinions. Our goal is that research like this will lead to better coordinated medical care for people with head and neck cancer.

Sincerely,
Sarah Sellevaag, BA
Graduate Student Researcher
Portland State University

I just took this survey and its innocuous. No goofy questions nor false scary questions like "do you think you can get HPV from taking a shower? (seriously a real question from one survey I was asked to comment on ). Ignore the disclaimer about skipping questions or being upset because none of us who have gone through this as a patient or caregiver are going to find these questions overwhelming.
Seems to focus on the importance of medical records and communication with your medical team so I'd encourage OCF members to take the survey.
Of course, all of the above is just my opinion
charm

OCF was contacted about this, looked into it, and approved the action to post their request on our boards.

don't click on the link given by Ignite 97 a one time wonder who answered NO to every question in the profile including Hobbies let alone having cancer or being a caregiver. I have notified the moderators about Ignite's Post since it is a cut and paste of one sentence from the original poster, Brian's post, and my post. In my experience, that is a tell tale sign of an automated SPAM bot. If the post does get deleted, you can just ignore this. I think there is a special place in Hell for posters like this.

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