ASH 2019: Disparities Around Accessing Health Technology Revealed for a Subset of Myeloma Patients
Is the cost of care in treating multiple myeloma higher for certain populations? In this Diverse Health Hub interview, Dr. Sikander Ailawadhi of Mayo Clinic, discusses disparities around access to care in multiple myeloma from the 61st American Society of Hematology (ASH) Meeting in Orlando, Florida.
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What are some of the underlying disparities and barriers myeloma patients face when it comes to accessing health information technology?
That’s an excellent question. So at this ASH we presented a large study that we have conducted at Mayo Clinic in Florida where we surveyed 1,000 patients and caregivers -- not just in myeloma, though -- that was looking at what’s called lymphoid malignancies, or myeloma and its associated cancers. But the huge population out of them was myeloma patients.
Now the reason for that study was because we already know there are so many disparities that exist in myeloma care. For example, patients who are African-Americans and Hispanics typically get to the right treatment much later. In a lot of cases they might not even get to the right treatment – for example, stem cell transplant, etc., the rate of use of those things is much lesser in minorities. But at the same time, we know that the cost of care is much higher for minority patients.
So, the aspect we wanted to look at was the fact that when patients are involved in their own care for which health information technology or electronic medical record systems are supposed to be helpful – patients can communicate with their physicians, they can know their test results, they can read about what the findings were.
That when patients are involved in their care by participating in electronic medical records they are supposed to have better care because they are their own advocates, but our hypothesis was we did not know if minorities -- African Americans, Hispanics, non-Whites -- do they access the health information technology, electronic medical records the same way or the same amount as whites or not?
So, we conducted a survey of about 1,000 patients and caregivers because in some cases patients may not access themselves and the caregivers may and we found out that minorities have a lot of disparity even in this setting.
We found out that significantly higher number of minority patients did not even know that electronic medical records existed and they could access them. They were not registered for using these records, even if they were registered they used it very infrequently or in some cases we found out that minorities were more likely to never access their medical records. And then what we did was to ask them questions if they wanted to learn about it because what if those patients just didn’t want to be involved in their care.
So, what was encouraging was to find out is that the minorities actually wanted to be educated and said that if they were educated or taught about the EMR [electronic medical record] they would use it much more.
We also looked at the differences between minorities from different hospitals -- patients who come to our main campus versus patients who go to our inner city hospital where Mayo provides care, and we found that even minorities in the two settings are very different.
So, in the inner-city hospital they had much more disparity, but as I said earlier they were also much more eager to learn about it and that’s where in the inner-city hospital patients said -- minority patients said that they would use the electronic medical records more and be integrated in their care if it was in their language.
That’s where we think there is a huge linguistic barrier also which we have not addressed fully so far, but hopefully this is a first step and then we can build upon it, build education and improve the patient care.
We know that African Americans actually have more frequent diagnoses of myeloma and get affected at a younger age, but we also know that they do not have very high-risk disease so if treated appropriately, African Americans may have slightly better outcomes -- but that has not been seen on a national level so far.
And we think that the reason for that is because in multiple studies we’ve been shown – we’ve been able to show that African Americans and Hispanics get treated late and get treated not enough for their diagnosis of myeloma. I think what needs to be done is we need to educate the patients, we need to educate the providers and find out why exactly this is – If it’s a financial reason?
It’s a distance reason? It’s not getting to the right doctor? Etc. But we really think that access to the right healthcare is a problem. In this case what I feel is that patients -- we know these disparities exist -- patients have to be their own advocates and at least ask for an opinion to get to the right myeloma expert -- at least for an opinion.
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