How Can Myeloma Patients Take Disease Ownership and Connect With Resources?
How Can Myeloma Patients Take Disease Ownership and Connect With Resources? from Patient Empowerment Network on Vimeo.
What actions can multiple myeloma patients take to ensure the best care? Expert Dr. Joseph Mikhael shares his perspective on how patients can take ownership towards optimal myeloma care.
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Dr. Joseph Mikhael:
I have long believed in patient advocacy, that we need to make systemic changes, we need to make changes within the healthcare system. But our patients are partners alongside of that, and there are many ways in which patients can be empowered to ensure that they have access to the best treatment possible, and this really begins with their own belief and understanding that they are part of that solution. This is…as one of my patients always used to tell me, I am taking ownership of this disease, I don’t want to own it, but I’m taking ownership of this disease. And that initial thought process, I think is important, secondly, to educate oneself about it, there is so much to learn, and there are a lot of difficult ways that it can be difficult to navigate resources. But there are great resources available because patients who are informed and understand their condition more can definitely facilitate the process to their best care. Thirdly, we’ve come to appreciate that having access to a specialist is very important, multiple myeloma may account for only 1 to 2 percent of all malignancies, and so very often, it may be difficult for a community oncologist to keep up with all of the details, and so…
Now, perhaps more than ever through the pandemic with access to telemedicine, patients can seek out an expert opinion. I prefer to call it an expert opinion over a second opinion because it doesn’t mean the first opinion is wrong, it just allows further education, further understanding to enhance one’s care. And then, of course, lastly, to be involved in community and other efforts that really push us towards better access for treatments for patients and better education are reducing the stage of this disease, so we can all provide the best care possible for our patients.