Direct-to-Patient Strategies in Multiple Myeloma Care

At the ACCC Annual Meeting & Cancer Center Business Summit, Anne Quinn Young, MPH, Chief Marketing and Development Officer, Multiple Myeloma Research Foundation, discussed direct-to-patient efforts in myeloma care that are poised to help improve data accumulation and ultimately provide precision therapies for patients.



Zack Bessette:  As you know, right now, we're recording this interview a day before your presentation on direct‑to‑patient engagement. I'm hoping you can briefly describe this concept in your space at least and the level of involvement community practices can have with it.

Anne Quinn Young:  When we say direct‑to‑patient, we literally mean going direct to patient for their data, specifically. At the MMRF and then this initiative that we're part of—one of the leaders was also the vice‑chair of the MMRF board, will be talking tomorrow, she'll be talking from the HBS Kraft Precision Medicine Accelerator perspective. I'll be speaking from MMRF—both take that approach of it's as simple as sharing your email address.

Once you share your email address, we can get you much more involved. We know you're out there. We know you're a patient. We can let you know about the various initiatives. It can be as much as sharing your genome.

How it relates to community practices in our minds are that the more patients who connect with organizations like the MMRF, like the other organizations that we've worked with through Harvard, patients will be better informed. In some cases, like in ours with our registry, they will have access to cutting‑edge sequencing technology that a lot of community centers don't have access to.

They'll get the reports back. The doctors will get the reports back, added insights that they never would have had before. And then also through this effort, once we reach a critical mass of patients, we are making this data available to patients, to researchers, to doctors.

If you're a community doctor who sees many, many different kinds of cancers and all of those cancers are becoming much more complicated to treat as well, given precision medicine and the more cancers that are not just a single entity but broken down into 2, 5, 10, 20 different types, it becomes much more difficult to treat every patient as they should.

Zack:  To be specialized.

Anne:  We'll be building this dataset and making it available to clinicians. He may have a myeloma patient not have that many with certain characteristics, can come to our CureCloud database, find other patients like his, and with the patient, make a more informed treatment decision.

Zack:  My follow‑up to that is, is there any pushback? You said the patient data come directly from the EMR, right? Is there any pushback from providers or any other stakeholders at all about this direct‑to‑patient relationship that you're trying from the data perspective?

Anne:  For this direct‑to‑patient effort specifically, we've done some market research. I'd say, in general, physicians have been excited about it, more because, one, they and their patients get access to this next‑gen sequencing technology that they wouldn't otherwise have access to.

What happens is we sequence patients using a 70‑gene panel. All 70 genes have been implicated with myeloma, get sequenced up at the Broad Institute. The patient and the doctor get the report back to say, "Were there any alterations that have clinical trials?"

We're also providing, through our portal, a list of, "OK, if your patient has this alteration, here's a treatment that is approved for another cancer, could be used off‑label as well."

It opens up a patient's treatment options because multiple myeloma is still incurable. Some of these mutations may only appear on...I think some of them are 2 or 3% up to 5, 10, 15% of patients. If that patient is in that small minority but there's a very targeted treatment for that patient that literally could extend or save their lives, it's phenomenal.

Precision medicine in multiple myeloma versus other cancers is much more in its infancy. Cancers like lung cancer and others, it's very, you have ALK mutation or whatever, you get EGFR, you get this treatment.

Some of the questions I'd say we've received are, "Well, is this really going to change how I treat my patient?" In the beginning, in the vast majority of cases, probably, no. For that patient who has no more treatment options, who may have a very specific mutation, it literally could save the patient's life.

As we collect more data and simultaneously science progresses, we may find out more that ultimately could change how they treat a patient. Today, maybe not, maybe it's a minority. That could change in 2, 3, 5 years.

Zack:  From what you've just described, at least from the physician perspective, what is the downside from allowing their patient data to go in this direction?

Anne: There isn't a downside to this. It's free for everyone, no one has to pay a cent. A patient consents from their home. They sign the medical waiver from their home. We send a mobile phlebotomist to come out and get the sample. Then we send the results right back to the patient and physician.

In some cases, we're expecting maybe 50% of patients would have something that shows up that's actionable, maybe a little bit less. For a majority of patients, it may not be anything except you don't have any alterations.

But we're not wedded to these 70 genes. As we learn more scientifically, we could change the panel and add genes or who knows what?

Zack:  As time goes on.

Anne:  Yeah. That you could increase the number of patients who would benefit. From our side, there's not any downside. We're really committed to keeping patients educated and doctors as well. As an organization, we have extensive, extensive patient education programs.

We have patient‑nurse navigators who answer an 800 number. Then we do do CME and nursing programs as well. We want to make sure that everyone across the board, from patients to physicians, feel supported and can maximize the utility of the program.

Zack:  Do you have any relationship with or partnerships with any practices in which any of their myeloma patients are immediately filtered through you?

Anne:  No. That's what we're hoping to build leading into this and afterwards. We have extensive partnerships with academic centers. We have 24 centers in our clinical network and our chief medical officers at Mount Sinai, so I think that they'll be a source for patients. Quite honestly, the patients and physicians who are going to benefit most are the patients not in an academic setting.

In an academic setting, next‑gen sequencing is done fairly often. They have access to more technology, more data to make more informed decisions versus the patient in the community or the doctor in the community. We're certainly tied to ACCC, ASCO, ASH, COA, trying to figure out, how do we get the word out? Even though it's a direct‑to‑patient effort, it would be phenomenal if physicians were suggesting this to patients. Say, "Hey, here's something you might be interested in."

Zack:  Are there any other discussion points that you're anticipating in your presentation tomorrow that you think is relevant?

Anne:  I think just emphasizing—I didn't use this word before and I think it’s important—our idea's to democratize access to this technology, and data, and information so that you don't have to be a patient who happens to live near a big center or has the means to travel to a big center.

You're someone who, now a patient and their physician can get access to this technology to personalized insights that could change their care and then get access to this growing dataset of patients to find, on the patient side, find patients like you, find patients who share your characteristics, see how they were treated, see what their outcomes are and the same on the physician side.

We've been blessed, earlier this week there was a new drug approved for multiple myeloma. There are so many drugs out there aren't pathways of, here's the right combination in this sequence for this subtype of patient, that subtype. It doesn't exist.

If we can generate a lot of real‑world data through this registry, that's, to break this apart, the liquid biopsy and the sequencing is really helpful to the individual patient and doctor. It could open up new options. It's the data coming from the EMR that will be able to help inform treatment decisions by finding patients with certain characteristics understanding how they were treated—these patients were treated with this regimen and this with this—and then who had the best outcomes.

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