Want to help Mayo Clinic improve our Multiple Myeloma website?

Looking for 2 volunteers

From time to time, I get requests from my colleagues for patient and caregiver feedback to help us improve things at Mayo Clinic.

Mayo Clinic will like to improve how information about multiple myeloma is presented on Mayo Clinic's website mayoclinic.org. We want to make is easier to navigate. The focus will be on the design of the page, not the specific text and information. We are conducting research sessions to get patient and caregiver feedback.

The interview sessions will be held virtually with the design researcher on your smartphone or computer. You will be asked to share your screen during the interview. You are not required to have your video camera on (optional).

The sessions will be 40 minutes long. We are looking to conduct the sessions between August 13th to August 20th, 2021 during business hours. This research is voluntary, and you can leave the study at any time.

cc @rhartl @pghparrothead @lkzvlk @lisal64 @mamaellie

Anyone with experience with multiple myeloma interested?

As you might remember, I have Cancer>MM>Amyloidosis>Gelsolin, among other things. As you know, Gelsolin is a form of Amyloidosis, a form of MM, a type of Cancer. I also have a number of other genetic issues, including Muscular Dystrophy>Limb Girdle>Fktn and FKRP, with Walker-Warburg. Now I have had added to my stuff "Addison's Disease", all with dilated cardiomegaly and Hyposplenopathy function and some other stuff, genetically. But if I can help, I surely will. Old Karl

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@colleenyoung Colleen, I need to confirm if you got my earlier response. Thanks, Nancy

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Sure, I would volunteer for your Website review project. I do not have
MM, but my husband does. I by nature need to research things, and found a very helpful videos done by Mayo in Arizona.

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@marjoe

Sure, I would volunteer for your Website review project. I do not have
MM, but my husband does. I by nature need to research things, and found a very helpful videos done by Mayo in Arizona.

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Hello @marjoe and welcome to Mayo Clinic Connect. Thank you so much for volunteering to assist. @colleenyoung will reach out to you with additional details.

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Hi Colleen, I fully agree that website needs to be improved. I would gladly be of help. Ilse ( 30 yr MM Patient)

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Thank you @oldkarl @marjoe @ilse @1nan for volunteering to participate. Please see your private messages for further details.

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I would like to help, but not very compute smart. I am still in investigation phase ( a year now) to see if my smoldering mm anemia caused from the myeloma or from previous gastric absorption surgery

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@cfranz

I would like to help, but not very compute smart. I am still in investigation phase ( a year now) to see if my smoldering mm anemia caused from the myeloma or from previous gastric absorption surgery

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Hi Cfranz, thank you for volunteering to help. For this phase of the project, we have enough interviewees. I would like to keep your name for future stages if you're willing.

In the meantime, I think you might appreciate connecting with fellow multiple myeloma travellers in this discussion:
– Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis? https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/

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Thank you to everyone who participated in the design research project. The researchers asked me to share this report with you.

We spoke to patients and caregivers in different stages of the patient journey.
— We conducted eight interviews in August 2021 with individuals who have been diagnosed with myeloma, spouses, and caregivers of myeloma patients.
— We learned about various experiences and perspectives from those familiar with Mayo Clinic and those who are not.

Your feedback helped Mayo Clinic:
— Identify how best to organize the information on the web page to be easy to review and understand – therefore less stressful.
— Understand the value of developing patient-centric information that informs and assists a patient through their health journey.
— Identify opportunities to provide a more holistic view of care at Mayo Clinic with additional content such as patient testimonial videos and information about the specialized myeloma team.

THANK YOU.

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