Want to help Mayo Clinic improve our Multiple Myeloma website?

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

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

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.

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.

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

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

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

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/

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.

Thank you to everyone who participated in this project to improve Mayo Clinic's Multiple Myeloma website and how we present information that is easy to navigate and relevant.

We spoke to patients and caregivers in different stages of the patient journey.

We conducted nine interviews in October 2021 with individuals who have been diagnosed with myeloma or breast cancer. We spoke to patients, spouses, and caregivers. We learned about various experiences and perspectives from those familiar with Mayo Clinic and those who are not.

Your feedback helped Mayo Clinic:
– Identify information that needs clarification on the treatment timeframe and the specialized care team.
– Understand the value of patient testimonial videos regarding relatability and understanding of personal treatment experiences at Mayo Clinic.
– Understand a video's role in helping viewers understand what Mayo Clinic's integrated team looks like for patient care.
– Identify opportunities to group related content for a better flow.

With gratitude,
Colleen, Connect Director, and Eralee, Senior User Experience Researcher