• Myeloma Crowd Radio Episodes
    • May 22, 2018

    Full Show: Introducing HealthTree for Multiple Myeloma Patients with Rafael Fonseca, MD, Mayo Clinic Scottsdale

Rafael Fonseca, MD
Mayo Clinic Scottsdale
Interview Date: May 18, 2018

multiple myeloma

Thanks to our episode sponsor, Takeda Oncology

Dr. Rafael Fonseca joins Myeloma Crowd Radio to share a new tool for myeloma patients called HealthTree. HealthTree can help myeloma patients find and understand personally relevant treatment options that can then be taken to their doctor for an informed clinic visit. HealthTree allows patients to track key myeloma lab values that can also help patients connect with clinical trials they can qualify for. HealthTree enables patients to become part of the cure by answering ongoing myeloma researcher questions and sharing their anonymous data to help researchers identify trends for better care for us individually and collectively. HealthTree will provide reports based on the collective patient data that will inform both patients and researchers. Over time, patient participation in HealthTree can help accelerate research for myeloma experts while helping educate patients. 

Dr. Fonseca describes how over time, HealthTree could become the “Waze” app for myeloma care – identifying the best course of treatment for each patient’s situation. 

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Full Transcript

Jenny: Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I’m your host, Jenny Ahlstrom. We’d like to thank our episode sponsor Takeda Oncology for their support of Myeloma Crowd Radio. Now this show is a special one to me. When I was first diagnosed at the age of 43 it was a complete blow. My husband, Paul and I had six young kids and like most of you, had never heard of multiple myeloma. I was seen first by a general oncologist who came highly recommended. Without doing a bone marrow biopsy, he looked at my blood test and said, “I think you have multiple myeloma. We’ll start you on Velcade on Friday and see how things go and probably do a stem cell transplant in a few months if that doesn’t work.” He encouraged me and said, “Don’t worry, you won’t lose your hair.”

Well, what Paul and I really wanted him to show us, were patients that were in my same situation, what they have received for treatment and how long they were living. When it came to treatment choices, I would pick what was helping patients live the very longest. Of course, I wanted an experienced doctor to provide me with a treatment protocol and suggestions on what to do for this cancer I knew nothing about. But I also wanted to base our decisions on comparative data so we could make these important life and death decisions in an informed way. Unfortunately nothing like that existed that time, but I was fortunate enough to have myeloma specialists on my care team.

Being treated by two myeloma specialists really completely changed the course of my life and I have been incredibly blessed to be in remission for eight years, which has allowed me to get back into advocacy work for us all until there is a cure. Today, we will be talking to Dr. Rafael Fonseca whose idea sparked the creation of HealthTree which is a new online tool for myeloma patients that has a dual benefit. It helps us as patients better navigate our care and at the same time helps researchers identify new pathways to a cure.

We’ll be launching HealthTree in June and we’ll be visiting over 50 cities this summer to host hands-on workshops across the United States to give you one-on-one help using this tool. To find the list of cities, you can go to the Myeloma Crowd website which is myelomacrowd.org and click on the top of the Health Tree button. On that page will be a list of the cities and we can try to find a city near you. We’ll be adding more cities over time so keep watching that page for updates.  If you’d like to suggest a location where we should come, we will do our best to get a team member there. With that, I would like to welcome Dr. Rafael Fonseca to the show.

Dr. Fonseca: Thank you very much, Jenny. My pleasure in being here.

Jenny: Oh, well thank you so much for joining us and thank you for all you’ve done. Let me introduce you first before we get started. Dr. Rafael Fonseca is a Professor of Medicine at the Mayo Clinic College of Medicine and is chair of the Department Internal Medicine also at the Mayo Clinic in Scottsdale. Dr. Fonseca was awarded the Getz Family Professor of Cancer Professorship Award and the Distinguished Mayo Clinic Investigator Award.  He earned his medical degree at the Universidad Anahuac, Mexico and completed his residency at the University of Miami and Fellowship in Hematology and Medical Oncology at the Mayo Graduate School of Medicine in Rochester.

He’s a clinical investigator of the Damon Runyon Cancer Research Fund. Dr. Fonseca is a Laboratory Chair for the ECOG Myeloma Committee which is a key group that develops myeloma clinical trials. He’s also a founding member of the MMRC, the research consortium of the MMRF. Dr. Fonseca reviews articles from medical publications and himself has authored an innumerable list of articles. In his lab, Dr. Fonseca leads a team with a focus on the cytogenetic nature of clonal cells of plasma cell diseases including multiple myeloma and is the current recipient of two prestigious prestigious multi-year SPORE grants. Again, Dr. Fonseca, thank you so much for coming.

Dr. Fonseca: No, again. Thank you. The pleasure is mine. I’m delighted to be here with you. 

Jenny: Well, I would like to also thank you for sparking the idea for HealthTree. Maybe you want to start by just describing what prompted the idea for HealthTree because you were the spark that ignited this idea.

Dr. Fonseca: Thank you. I’m happy to go through that and also thank you to those who are online. If I could have just explain this briefly, we were sitting around the table at one of the ASH meetings and discussing some of the challenges that patients face nowadays in the care for their myeloma. I think your story is quite illustrative to that point, Jenny, that we find that there is a large fraction of patients that either at the time of diagnosis and some of them throughout their course don’t have access or don’t create connections with individuals who specialize in multiple myeloma.

I think it’s recognized as very important because the amount of knowledge that is constantly being generated about myeloma, the best treatments for myeloma, ways and strategies in which patients should be managed is constantly changing. One of the focal points of our discussions was well, what happens if you’re in a rural region where maybe you have no options, you have no easy transportation, and you’re going to be cared for by a general oncologist who despite his or her best intentions may not be up to speed with what’s the best therapy or what’s the best available for patients with multiple myeloma. We talk about some of the ways in which people have tried to address this in the past. For instance, things like promoting continuous medical education reaching out to those patients and the like.

But we came up with the idea of asking the following question, what if we empower the person who has the most at stake in that process and that is the patient to have at their fingertips information that now has evolved into this tool we call HealthTree that would allow them to start the conversation and prompt the right questions with their treating oncologist? The goal that initially started this, and the spark, was to provide a series of tools that would empower the patient to have more informed conversations. Now, that may seem difficult but our assumption was at the time, and I think that holds true that we could actually put this together. We could put together a tool that would allow this conversation to start and allow patients to go back to their treatment doctors and at least prompt the questions of what need to be at the different stages of diagnosis and treatment.

Maybe before we go into the questions, I’ll just give a very specific example. If a person, for instance, is thinking about okay, I have this let’s say newly diagnosed myeloma to make it simple at this point. What are my best treatment options? If we can provide that through a tool like this, we realize this is not something that is dictating medical practice. We realize we are not trying to modify directly the behavior for those oncologists. But what we think is the patient should have some succinct and clear information that would allow them to be a very significant part of that discussion.

Jenny: Well, I completely agree because every time you go to see your doctor and something has happened with your myeloma, whether you’re newly diagnosed or whether you’re relapsing (and a lot of patients relapse multiple times as we all know), then you need to make a very important treatment decision about your care. I know I have heard you say other times that you were there to help guide the patient. But in terms of picking, a lot of that responsibility does still rest with the patient.

Dr. Fonseca: That is correct. We know clearly that the patient with the support of their families, caregivers and friends, are the ones who should be driving the conversation about treatment choices. Now, we did ask that question at that time. Well, isn’t this too complicated? How is this going to be possible? We started assuming well, at the end of the day, there’s a finite body of information. Of course, this will be changing over time but there is a finite body of information from which we can approximate some of those for recommendations.

We may never have the perfect one and the patient discussing with a physician should make that final decision. But we can guide them pretty close to what we think should be a good way of approaching a given situation with myeloma. To do so, one has to know about the treatments but one also has to know about the patient. What is the age of the person? What other medical conditions do they have?  How far away do they live from a treatment center? Have they had any previous problems with similar drugs and so forth? And we can get into more of that detail but we felt those things could all come together in a tool like the HealthTree.

Jenny: Yes, absolutely. I’d like to talk a little about the importance of a specialist because you touched on that at the very beginning. Before we start digging into some of the features that HealthTree has, I just like to reiterate what you said at the beginning. There is research now that shows both from the Mayo Clinic and from a recent study at the University of North Carolina that shows that myeloma patients who are seen by myeloma experts live longer.

Dr. Fonseca: Well, that’s true. I think there is a significant factor there that we think that comes into play. And that is people who are seen by individuals who focus in a disease, and I’m going to venture out and say this is probably true for many other cancers.  If you’re a patient and you’re being cared for by one of these physicians, you have a much greater chance of receiving recommendations that are truly state of the art. That has been shown by a couple of clinical trials. Now, there is a possibility and some statisticians always say well, you have to account for the patients being seen at a particular center so maybe they’re a little bit healthier.

But even when you look within a center, patients that are cured for by specialist, not oncologist alone but oncologists that specialize in myeloma or a hematologist that specialize in myeloma, the outcomes are better for patients and it’s just a reflection of the knowledge. I know this can sound self-serving but I would say this is not the case. This is more of a reflection of the amount of information and the burden that one would have and just trying to keep up to date with everything that is happening. As I always tell my patients, I literally don’t know whether the recommendations I’m giving you today might already have changed by the time we would discuss them again six months or a year from now.

Jenny: Well, I totally agree. Dr. Landgren mentioned that too. He said, “Myeloma used to be that you could do an update in myeloma at a meeting every two years or so and it would be totally sufficient,” and he just said, “No. Six months is almost not enough.” The advances are happening so rapidly now in myeloma which is a huge blessing and also a challenge that we decided to move forward on.  

One thing that we built into Health Trees is the ability for patients to better understand their treatment options. Like you were saying, there were some questions that you can ask and I know sometimes it might be fitness status for example. Patients who are very unfit or frail probably are not going to be getting stem cell transplants. Or if a patient has a prior health condition like a severe cardiac issue or very extreme neuropathy, there are some treatment options that probably would not be considered for that patient. Is that accurate?

Dr. Fonseca: That is correct. The reality is when anyone of us who specializes in myeloma walks into an office and we meet with a patient and their families, we bring all of these factors into play and they’re part of our consideration as we decide in what may be the best next treatment. Some of those things are obvious if you may. For instance, there was a patient who already had or even for other reasons let’s say a patient had a peripheral neuropathy. Let me give you an example.  Patients with diabetes can have peripheral neuropathy because of their diabetes, especially if it’s a diabetes that has been diagnosed many years later.

Well, any myeloma specialist that walks into that room should immediately have a little red flag that tells that oncologist well, it’s true that you could use medications such as bortezomib, the Velcade. But perhaps you should consider other things that would have a lower risk of making that neuropathy worse. That’s what we’re trying to capture with a tool like the HealthTree that brings to the forefront a way that you could one, think about maybe avoiding some medications or at the very least create a different priority and how would you use those medications so that one has it right there in front of the oncologist the consideration of that particular toxicity. And that goes through every other realm that we consider important.

So we talk about neuropathy, we need to talk about the health of the heart. But the performance status is it’s a very good one as you state Jenny. If someone is not well enough and it’s not strong enough, it’s really not a good idea to try to push that person and try to say we should get to the stem cell transplant right away. Now, they may get stronger, that may be a possibility down the line. The good news is we have so many new medications that are approved that there is usually much more than just one path to approach the treatment of the disease.

Jenny: What we have done in Health Tree is to take all those types of factors and take them into account and then look at all the different options that are available. When you talk about myeloma therapies, there are so many different treatments. And then also many combinations treatment that can be put together, it’s really truly incredible. How does this patient navigate when you’re talking about general education versus personalized education? The goal is to help patients identify different treatment options that might be right for them personally and understand also the clinical trials that might be right for them personally.

For each of those different options, we have created a page with a description and a rationale about that option and a way that would link to research papers and videos by experts talking about that. A patient could review that before they go to their appointments. They could take personal notes on it, they could print it out. And then what you said earlier is correct. It is a conversation starter with their doctor to say let’s talk about these three different options and then you have read up on the options before you even walk into the clinic so you can use your time just really wisely because we know how busy you are.

Dr. Fonseca: Well, if I could build up in that very last point which is so important, under the best of circumstances, everyone is limited on time. And one of the things I always tell my patient is anything we can do together to optimize the time we’re face to face, it’s going to be to your benefit. Let me give you an example. In the older days and before we have had availability of tools like Health Tree, I’d always tell patients, it really serves us well if you actually personally keep track of this in some form of a table. The easiest way to do that for instance with a computer with Excel, but even a paper table would be good enough.

The reason is that if you give me that information and particularly if we’re bringing together lab results from different hospitals and different clinics, it makes it so much simpler that I can immediately focus on what the trend is and what the problem might be if there is one. So we can spend most of our time in a meaningful engagement. The complete opposite of this would be that I walk into a room and someone would say well, yes, they told me they were sending the labs and I go out and I don’t find the labs and it turns out that we have to call another physician’s office and then we wait a fax to come in. When I get a fax, they just have some numbers that sometimes are very illegible in that fax.

So we spend all of that time just trying to gather the information. When in fact, we had been spending that in a more meaningful face-to-face conversation. Our thought is that the output that people get with something like HealthTree would allow them not only to do that but also even if you’re going for the first time to a new doctor, or a new provider, you can immediately show that and they should be able to say oh, this is very clear. I know what the person has received, what the outcomes are and maybe what my consideration should be next.

Jenny: Exactly. In showing HealthTree to multiple myeloma specialists, they’re very excited and captivated by our summary page because it has a list of situations about yourself as a patient, your diagnosis state, your type of diagnosis, the different myeloma genetics you might have, some of your latest lab results and just information that would help them understand your fitness status. In one page, you can see really a quick summary history of what the patients received, how they responded, some of their side effects, and it’s just extremely valuable to have just a quick summary that you could even save as a PDF and email to another doctor when you’re going into a consult.

Dr. Fonseca: That is correct. Again, this is a win-win situation. That’s the key thing. It just allows for that conversation to happen. I’ll just say with a little bit of a comic relief that some of my favorite patients, some of my more difficult patients are engineers. The reason for that is engineers who come with a most beautiful document not only that shows me the data but very elegantly grasp what’s going on. As far as information, it’s fantastic to work with engineers. I say it sometimes is harder just because the biology work is different from what you normally would see in engineering that’s a little bit more predictable. It’s really great to be in a consult room where we actually have all these information handy. Again, the key point is it just immediately takes you to the meaningful conversation.

Jenny: We talk about treatment options and how they’re presented back to the patients. There are quite a few different treatment options. What was we’ve tried to do in HealthTree is not only present all the treatment options but not to overwhelm the patient to try to offer some expert preferred guidance. The ultimate personalized medicine is going to your doctor’s office and having that conversation with your doctor. But it can give you a little guidance and help navigate that down a little bit. I know we’ve had some people ask how are those treatment options being identified, and that will be through results from a survey that we’re doing with myeloma experts to see how they commonly treat specific situations.

Dr. Fonseca: Yes. I think it’s important to say this will be constantly evolving. I know one of the hopes is that the survey will be part of a living and breathing document whereas as people understand better data that is shared for instance from clinical trials or updates that we have from these trials. We can provide more current recommendations with regards to specific treatment. I think to some degree, this would be consensus recommendations. At some degree there is going to be some things there that are going to be just a natural consequence of what most people will do. I envision that this could be like the app you may have on your phone called “Waze” that helps you navigate in traffic. It helps you find the best path. HealthTree could be like the “Waze” for myeloma care. For instance, I mention the neuropathy is a very good example. If you have someone who has peripheral neuropathy, that person should try to avoid if at all possible, not that it’s contraindicated but if at all possible, you should try to avoid further administration of something like Velcade.

Jenny: Yes, as more patients join the system, then can start to actually see patterns of optimal care by a patient type, which was my dream. When I was first diagnosed, I wanted it to show me all the patients that looks like me and maybe it was by genetics, maybe in my same age group. Show me what they got for a treatment and then show me what’s working the best or what’s giving them the longest progression for your survival or overall survival. I think that type of data is a natural outcome of HealthTree.

Dr. Fonseca: There is a growing body of literature and we have talked about this, Jenny, regarding what people call real world data and there is a lot of power in that research. This would probably fall somewhere in between that real word data and the standard clinical trial what people call in other fields, “big data.” Sometimes there are very large databases from insurance companies that can really provide very interesting information. Oftentimes their power is in the numbers that they can have very large numbers of patients with a given condition. The one thing that becomes a bit more challenging is that they don’t necessarily have the detail that’s for instance a medical record or a registry like this one could potentially have. So I think this could also serve as a platform on where patients share information, share experiences and I’m going to go as far as saying either patient driven or even physician driven. Some specific research questions could be addressed.

Jenny: Yes, absolutely. What we’re offering in HealthTree, because we wanted to extend the power of a system like this, not only can you find treatment options you can find clinical trials – I think we’ll come back to that later – but you can also help advance a cure by speeding up research. If an investigator has a question – and typically they would have to construct a very large study and it would be expensive and costly and take a lot of time – you could just easily ask a research question of the myeloma patients in the system like, “Have you been revaccinated after stem cell transplant?”

And then quickly, you could assess oh, well, 80% of patients have been revaccinated or only 20% of patients are really getting the pneumococcal vaccine after transplant on an annual basis. Or questions like have you had minimal residual disease testing performed in the last year and do you even know what that means?  Just really key questions could be answered very, very quickly. Whoever responds to the questions, the survey responses can go back to the investigator asking the questions as well as the patients who participated in the responses. At all times, the patients can continue learning about myeloma and about their best optimal care options.

Dr. Fonseca:  For the persons who might be listening, if you would ask the question, well, what’s in it for me? I think even if the research, which always takes some time will take some time to yield, just the practical implications of having a tool like this that can help you enter that information and generate this very succinct report that then your physician could look at and have a very clear idea of what’s going on, it’s of great help just in a day to day clinical practice.

Jenny: Absolutely. We are capturing some lab value data also because that is critical to ensure that you are able to join clinical trials. A lot of clinical trials will have inclusion criteria or reasons that or lab values that will direct whether you can join a study or not.  We are integrating with SparkCures for clinical trials. I know a lot of you are very familiar with SparkCures which we think is just one of the best tools out there to find multiple myeloma clinical trials specifically. You’ll be able to find treatment options as well as clinical trials.

For that, we’ll ask for some lab value data but over time will also be inviting you to add more lab value data and we have some patients who have now tested the software out from early groups and they have said you know, I have one facility where I have an actual online medical record and my second facility has nothing. They don’t provide anything electronically. So I have to ask for a lab printout every single time I go. Now, I have two different sets of lab values. I might go to my specialist and get some lab values done there and then I go back to my local community center and most of my labs are there. So he said, I really want to be able to track my lab values. We have included a way to do that as well.

Dr. Fonseca: Oh, that is so important. Let me give you another practical application for this just speaking about lab values. As you state, you go to different places, very simply, and I hope many of you have not faced this, but you should know that if you measure this serum free light chain, not every lab value uses the same unit. It has happened on a number of occasions that people compare different lab values with different values and that immediately creates concern. If it goes up, whether it’s progression, if it goes down. Why is it going down so much? Maybe this is good. And we could have some of that consistency. Having just a centralized tool when you can start doing some of those comparisons becomes very important. I think it would make those things quite a bit more self-evident.

The other one is that when I see a new patient, just let me sort of walk you through the classic scenario. Let’s say I see new patient that we get a call from a physician and the community, would you mind seeing this person because we’re a little bit stuck. We don’t know where to go next. It is not unusual for us to get 200 to 300 pages that are printed out which could be a combination of very legible medical records and very illegible blood work and nursing orders and flow charts from chemotherapy et cetera. And the modern physician is supposed to go on extract all the information for those 300 pages literally in the same amount of time it takes to do that consult and have all that interaction with a patient. That’s what we do. Some physicians take time in advance and they prepare for this. Some of them do this just right before the consultation. Some of them will do it right in the room with a patient if they’re looking at these records.

That’s of course the part of care and practice, but one can very easily argue that’s not optimal use of a time of anyone. If we could already get a head start just with that simple summary that would tell you okay, this was the date of diagnosis, this was the first treatment that was done from this date to that date, these were some of the things that were thought of all the treatment at the time. Even as that physician still goes through that stack of papers which they still will do (that’s part of what we do), it’s a lot easier to understand whether you’re looking at because you already have a summary of what the history is there. You know what the story is there. That would be again a win-win situations for physicians and for patients.

Jenny: Well, I agree and then you add the lab value data so you could track the free light chains or you could track the M spike from the beginning of the treatment and then watch it through all different treatments and have even the list of the five last lab values. So you have that on your summary page that would just be additive.

Dr. Fonseca: I think one of the things that the audience should know which you have built into this, you have some tools that you can actually show trends. The only thing that’s important about data as we all know is trends. Not only the absolute numbers but what’s happening to them over time. If you have the availability of that through the HealthTree then it’s easier to visualize what’s going on.

Jenny: And it’s in one place.

Dr. Fonseca: Exactly.

Jenny: I wanted to talk a little bit about how this could help advanced research. You have mentioned it a little before. I know there are IRB studies and maybe you can explain the IRB study process but we intentionally didn’t create this to be an IRB study because we wanted it to be this living breathing continuously improving platform.

Dr. Fonseca: Sure.

Jenny: Maybe you could state the difference between what you see are typical clinical trial studies and HealthTree.

Dr. Fonseca: Sure. Well, there’s a whole range of things that can be used to do IRB type protocols. The most common ones that we do are treatment protocols and there is usually people think about three phases. The phase ones where a group of patients is treated as you’re trying to understand the new medication particularly with regards to toxicity. Once that is completed, phase two means that a group of patients with a given condition is treated with the hopes of understanding whether there is significant activity of such medication.

Phase three is when that is compared to the standard of care. Sometimes that may be that alone versus the standard of care.  Sometimes that could be adding that extra new thing to the standard of care that an easy example probably for the audience when people looked at the ASPIRE clinical trial that looked at the combination of carfilzomib, lenalidomide which is Revlimid and dexamethasone versus Revlimid dexamethasone. That’s a phase three trial because half of their arm gets the Revlimid, the other half doesn’t get it.

Now, what these trials have in common is they all require a pre-specified type of individual, type of patient that would be eligible to go into such trials. And then they’re seen in the clinic and we offer participation to patients in these trials and then they’re monitored. But they reflect a very defined and unique subset of individuals with a condition.  Now, under IRB, you can do other things that could be for instance registries or retrospective review of data. But I think the way you envision this, this is more a living and breathing document. It’s a registry that’s maintained, augmented and really curated for patients and by patients. That’s really the beauty of this is that it’s sort of, like we’re seeing in many other realms in our life, this is just a way in which voluntarily you have an electronic or an online community that is all contributing to a body of knowledge and that’s the vision for the HealthTree. But there is this mutual understanding that you participate in this. There is some positive that comes out of this of course from the availability of this tool and probably that is a number one driving factor.

But then as patients get together, you could very easily envision that if you start getting this to grow, then you can ask some very specific questions. I think you said well, how many people get the vaccinations as they’re supposed to get it, well, maybe that can be asked to this tool. I’ll give you another example. As many in the audience know that we used medications to protect the bones and patients with myeloma, but as it turns out, that’s not always done and there is sometimes good reasons why that is not done but sometimes it’s just that — it’s just one of the very last things that people are thinking when they think of all the treatment of myeloma. They may forget about the use of bone-protecting agents. I think tools like this will deal with those aspects in medicine. A lot of this is considered under that sense of quality or the quality practice and I think something like this can be tremendously helpful there.

Jenny: Well, our goal is to support researchers and that’s why we have a dual benefit to immediately help patients by helping them understand what options they have available. And it could provide them education like you are saying “80% of patients are getting bone strengtheners. Maybe I should be getting them too. But HealthTree also helps support research. A researcher could query the system and ask how long had Revlimid or Velcade been used over the long term or what was the average time to treatment from MGUS or smoldering myeloma diagnosis and what about people with high risk features? Tell me about their outcomes as well. Our goal is to offer a free portal log-in to verified myeloma researchers so that when they help make Health Tree better with the logic and other features that they can add their expertise to then they also benefit from the data in HealthTree. HealthTree becomes this very easily accessible tool for de-identified or anonymous data and patients own their own data in HealthTree.

It’s a very key point that patients are in charge of their data and they own their data and they are willing to share it without names or emails and things like that that that piece won’t be shared. The other information, I mean you could do so many searches inside of HealthTree about even things like do you have any known autoimmune disorders, or what’s your quality of life right now? Doctors want to know this type of information and they are just so busy and overwhelmed with their own practices and their own research. This type of research is not easily performed. It’s expensive and it takes time.

Dr. Fonseca: Oh, there is no doubt. The process of clinical research is very, very slow and is very expensive and it’s something that can easily go into this course of millions of dollars very, very quickly even for small trials. Hopefully one of the potentials for this is to help ask and answer some of those questions that traditionally would not be amenable for clinical trials.

Jenny: I know that when you look at a myeloma patient, you’re looking at them from like what you said earlier, you’re looking at their fitness status by having them walk in your clinic room. But they come with a whole history also. How did they respond to their drugs? What are their myeloma genetics? What are those features? Have they had genetic testing performed? That’s a really interesting question. What type of quality of life have they had? What types of side effects have they experienced? What type of family history did they have?

I know Dr. Ghobrial is working on a study right now to assess are these early precursor conditions and family members. Is family history something that we could also capture inside of HealthTree? We are capturing this because it is something that’s easily captured. A lot of this information is not in an EHR record. I read a study that show that only 8% of a normal person – maybe myeloma is more – person’s health care information is actually in their EHR record at the clinic and it’s all over the place. It’s at the allergy office and it’s at the chiropractor’s office and it’s here and it’s there. Most of it is sitting inside the heads of myeloma patients. So how do we all share that so we can come to faster conclusions for you?

Dr. Fonseca: Well, I think that’s a great point because if you look at the typical notes from a clinician encounter and again keep in mind — and this is just to describe what happens in the real world so that the average physician may see three, four new patients sometimes in a day they have to see 15 or 20 returns. That is they get to work sometimes at seven. In the morning, they have to run, do this, they have to go for lunch. They do this afternoon, sometimes would go back to the hospital and then ­try to make it home in time for dinner. By the time all is said and done, they’re supposed to have captured all of this information in a very accurate and as objective manner as possible.

Now, in this process, getting all the details for instance of the family history as you just described, Jenny, is really not one of the top priorities. If you actually go and look at the clinical notes and they talk about family history, there’ll be a few remarks there but rarely would you see a more nuance level detail that would allow you to ask questions such as you are proposing. I think something like this that it’s patient-centered, you could spend more time thinking well, yes, well my grandfather had this, or my mother had this particular condition, and I think we will have some depth that has not traditionally been captured in the standard medical record.

Jenny: Well, in my mind I think you’re being asked to do an impossible task.

Dr. Fonseca: It is hard. I am absolutely putting a plug in for that.

Jenny: Well, it’s amazing that you are able to do what you do because you’re seeing patients and you’re trying to assess all this information about the patient and make it personally relevant to them. And so this becomes a tool to help you do your job so that you can use your time as effectively and wisely as possible.

Dr. Fonseca: I can maybe interject just one brief story. Once I was talking to a person in a patient support group and someone made a comment, “Well, I just don’t get it. We send the faxes and I don’t have the complete set of messages back with all the information of what am I supposed to be doing.” Someone who is not being seen in that particular practice. And I just had to go on to say well, it’s not really until you sit down in front of that person that you engage and it does take time, it does take mental energy. You have to sit. You have to ask, how are you doing? Are these labs okay? Was something happening when you had this blood work that you can engage into that process?

This notion for the lack of better words like a fax came into the office so I’m assuming everything is fine because I assume they have looked at it and they probably went back and they looked at my record and made sure the numbers were fine or not. That is more often than not, not the case because it’s not until you sit with a patient and the person that you have that time to do that analysis. Unless someone is explicitly telling you that they’re going to work with you and there is no easy way to do that with a current medical environment, there is a lot that really has to be co-responsibility from patients.

Jenny: Now, when we think about — we heard a lot about personalized medicine recently. And I know a lot of the focus has been on genomics and then I know a lot about this different clones in the myeloma tumor which is really, really important. I know I’ve heard a lot of other doctors say sometimes it’s the strength of the immune system additive to that because that’s what’s happening in the bone marrow microenvironment. But then you layer on top of that like particular side effects that a patient might have had or their quality of life type of issues or just the impact of their depth of remission. And so it seemed like personalized medicine to me is genomics, yes, but the whole picture of the patient.

Dr. Fonseca: Yes, of course. One could argue a little bit of this as semantics. For those of you who are in social media, you sometimes see doctors spending an enormous amount of time fighting over what means what. But the term personalized medicine has been used mostly to refer it to genetics. But in reality, everything we do in medicine is personalized because it’s not a cliché but every single patient is different. Everyone is an NF1. One of the common questions we get is well, what do you think about patients that are like me with this situation? Well, I can tell you about a certain aspect of their care. But what I can tell to every patient is everyone is different.

So that’s why this tool brings into the forefront of that conversation not only the genetic factors but factors that relate to the person’s health and again I think we made illusion too as well. It doesn’t matter how easy it is for you to get to a treatment center. If you don’t have a capacity to be driving or you live far away from a treatment center, that’d be an important factor. If one has two treatments that are equivalent and one includes medications that can be even as a pill orally, well, we understand that sometimes has other implications. Maybe there is differences in how one has to deal with copay and copay assistance but maybe that has a benefit that you don’t have to be driving to a treatment center as frequently. All of that comes into play in how one does this more tailored or more personalized approach for selection of treatment for a person.

Jenny: Yes, absolutely. I started Myeloma Crowd Radio to ask the question, how can patients themselves help advance a cure? What’s something that we can do? Because we’re not going to step into your lab. We’re not going to do the experiments. We’re not going to run the clinical trials but we could participate in the clinical trials. You referred to big data, when you look at big data projects that are overarching – so Microsoft Health tried a big data project and Google Health  tried a big projects – I think there are three challenges to big data projects.

The first is that they sometimes people want patients to just share their data but they don’t give anything back that’s valuable to the patient. When we designed HealthTree, we made sure that it provided value back to patients. And the second challenge I think that is common is sometimes they go too big and broad. It’s not disease specific. This is disease specific. We only care about myeloma and I’ll be so happy the day myeloma is cured because I will go swimming with my children or do something else and go get ice cream and relax and not work so hard I think. And then the third challenge is that data is everywhere. It’s in myeloma patient’s heads and in their lab records and in their genomic data and it’s hard pulling it all together. That’s what we have worked to provide with HealthTree.

Dr. Fonseca: I’m going to say something that’s going to be maybe a little bit from the left field here. But I think as you look at data, data can sometimes be comforting and I’m just going to make an illusion when I was in training. You sometimes, as a physician you go through a process and probably this will resonate with a lot of people too that you’re barely making ends meet in your life with money. Sometimes, one is even fearful of going to the bank account to see what the numbers are. It’s not infrequent that once you see it, maybe you don’t like it but at least you don’t have the anxiety of the unknown. I think sometimes having this information, I have seen this over and over with patients and we have this information.

Even if sometimes we don’t get the results we need, you remove the question of what are they. You at least know what they are. That can be a significant component of anxiety. Now, everyone has different ways in how they approach things. But for a good number of people just understanding where you are at least gives you the peace of mind of not knowing necessarily that everything is well but knowing where you are.

Jenny: Yes, absolutely. Going back to what you said earlier in the show, for the majority of myeloma patients, these 80% of myeloma patients which is most of us who are being seen in community centers, how do they leverage the power of experts? How do they connect with the specialists like you? How do they access that deep level of expertise? They still would benefit from myeloma specialists on their team. There is no question about that and we’ll have links to myeloma specialists so they can find you. Helping elevate the standard of treatment in multiple myeloma is one of our big pushes. One of the reasons that we’re doing this, we want to reach everybody that has myeloma. We want everyone to have good outcomes not just for those who live close to academic centers.

Dr. Fonseca: Well, that obviously is really our goal and our wish for this project. We wish everyone could be seen as an academic center. We realize at least currently that’s practically impossible. But is there a way that that information could be sent out, and maybe this was not as self-evident as we started the program, but now that you’ve heard a little bit more about the HealthTree, our goal is that the message will go straight to patient. It’s not to the physicians, straight to the patients to empower for that conversation. And we also mentioned that this is not medical practice. I think this is very important. We’re not prescribing, we’re not making the treatment recommendations.

But you could imagine if there is someone who has received a number of treatments and again let’s say the person already has neuropathy or developed a neuropathy with a Velcade regimen. And when the person shows up to that oncologist which parenthetically oncologists were in the community and tend to be even busier than the academic oncologist. They can see sometimes 30 or even 40 patients in a day. The time they have for that interaction can be quite minimal. Oftentimes patients are working also with some of their delegates, their physician assistants and nurse practitioners.

So just a mere factor that a patient would say as an example, say I’m in the HealthTree and it tells me that maybe because I am getting Velcade, I just need a reminder, can we talk about my neuropathy or I’m getting Velcade. Can I get a reminder about the use for Acyclovir? I should be getting Acyclovir. Or if the person, the protein start rising, the patient would come up and say based on what I’m finding here from HealthTree, I’d like to talk to you about maybe the combination of daratumumab with pomalidomide and dexamethasone just as an example. You would prompt a more educated conversation. And if I may say so, it may even increase the education in the awareness of the physicians, which I have not seen anything negative about them, it’s just that it is a real challenge for a general oncologist to stay up speed on everything there is to be known about myeloma.

Jenny: Right. When you’re treating 12 or 15 other cancers. We talked about you’re having an impossible task. It’s just like 10x for the general oncologist. 

Dr. Fonseca: Exactly. When one deals with diseases where there’s not a lot of change, well, you can master it. But one of the beautiful things about being participants in this myeloma field is that everything moves so fast that you just can’t master it and there is so much to be known. I think when you think an oncologist is going to be up to speed in lung cancer, breast cancer, lymphoma, colon cancer. By the way, they’re also going to be experts in myeloma, it’s just realistically impossible.

Jenny: Absolutely. I want to leave enough time for a caller questions. If you a question for Dr. Fonseca, you can dial 347-637-2631 and press 1 on your keypad and we have a few questions. Go ahead with your question.

Caller: Hi. I’m so sorry. This is Dana Holmes. Hi, Dr. Fonseca. Hi, Jenny.

Dr. Fonseca: Hi.

Caller: Hi. Thank you so much for this wonderful program. I was just thrilled to listen in on it and I really just wanted to thank you both for being champions for the myeloma community. It’s just so important to know that our top specialists really do care and are stepping up and trying to find ways to help all sorts of patients, patients that have access to the specialists and patients that don’t. I have been the queen of overview charts of my lab work and imaging diagnostic history really from the very day that I was diagnosed. It just makes for such a better and productive consult whenever I do go to any specialist whether it’d be a new one and whether it’d be my current one.

I just remember when I was first diagnosed with smoldering myeloma, I felt really stunned and I just really had no direction, didn’t know where to start and it’s just I have worked really hard at actually becoming a very informed and empowered patient. So I just really see this as just another tool to really help me continue. With all that said, I have a question. Will HealthTree capture specifically smoldering and myeloma trial participation and outcomes that patients obviously self-report, which I as a smoldering patient or another myeloma patient could actually review because I see this as a really super helpful tool to see more real time experience outcomes rather than waiting for abstracts and published articles which really the average patient doesn’t have access to.

Dr. Fonseca: Yes.  I can speak to the component certainly of the data that is captured. I should start by saying Dana, you obviously are the champion of champions as well too. Thank you for all the work you do.

Caller: I’m honored to have you say that. Thank you.

Dr. Fonseca: But the answer is yes. Health Tree will have fields for capturing information regarding smoldering.  I think it will evolve as far as how it’s linked to clinical trials and clinical trial data. But another way, I think you make a great point. How do you see this real time? One of the ways in which the real time world has shown of something is this application of ways. I don’t know how many of you used that to navigate but it tells you in real time what the traffic is. I could envision how this grows and there is more and more participants in this. You could imagine a feature where there’s a new drug that has a certain side effect that maybe something like the Health Tree could detect before we even reports about it in the medical literature.

Caller: That’s really fascinating. I look forward to becoming part of this. I’m not in treatment. I’m smoldering. But I will enroll in just about any study, observational study that I can whether it means just giving my data or I’m enrolled in Dr. Ghobrial’s P-Crowd Study. I’ve been in that for the last three years. I’m providing her with my bone marrow samples, my blood samples. It’s the simplest thing to do. I’m thrilled that this going to go bigger and better because I really think patient if they learn about this, they’ll be more willing to — and especially, Jenny, what you said about, getting something out of it because that’s really critical. Patients are sitting at their computers and spending a whole bunch of time inputting all this data and then they never say anything.

Jenny: Right. No, that can’t happen.

Caller: The fact that we’ll be getting something tangible out of it is just really great. I’m wondering, now I know that you’re going to be doing all sorts of stop overs during the summer and going to all sorts of cities and doing these sit down meetings with people. But for the patients that can’t attend them, are you guys going to be doing any online tutorials or video tutorials that we could actually sit and watch and educate ourselves on how to use this?

Jenny: Yes. We have taken the product now to three or four different user groups and we have very kind myeloma patients walk through the system and give us their feedback. We really took that feedback and almost completely rearranged whole sections of Health Tree, thanks to their feedback. We’re in great gratitude. We owe them a debt of gratitude for that because they helped make it better. Our goal is to make it simple enough with video tutorials on the pages.

Inside of the system, you can click on the video tutorial and see well, this is how I add my prior treatment and my side-effects and my outcomes. Our goal is to make it as simple as possible so that patients can use it online from home if they need to. But we understand that a lot of people sometimes don’t feel very comfortable with technology. Whether you’re having a spouse help you or a child help you or even a grandchild in some situations help you, we want to provide a lot of different ways to help patients. And for those who wants hands on help, we’ll have teams of people sitting there just helping you go through it. (Find a summer HealthTree Workshop here)

Caller: Great.

Jenny: What we found by the time we had changed the system and made it simpler and easier to use, most patients were just kind of going through it on their own without needing much help on our end.

Caller: Great. Jenny, will there be any sort of 800 call in number for basic and general questions that somebody is sitting there and getting stuck and something, the video is not working and they can’t kind of get a little way through or a way to email you guys and say hey, this is a problem that I’m encountering. How can patients actually communicate to the folks behind Health Tree?

Jenny: Right now, we have a feedback button in the system because we still want your feedback. If you have issues, you can click on the feedback button and describe your problem. We’ll also be adding an online live chat in the future so you could chat with somebody while you’re in the system and they could help you.

Caller: Great. Well again, thank you both and I wish you both a wonderful weekend and I look forward to this.

Dr. Fonseca: Thank you.

Jenny: Well, thank you Dana. It was so delightful to meet Dana in person at one of our Round Tables.

Caller: Oh, yes it was, Jenny. Yes, it was. It was a terrific meeting too. Terrific meeting.

Jenny: Okay. Our next caller, go ahead with your question.

Caller: Well, hello Jenny. This is Gary Peterson.

Jenny: Hi, Gary.

Caller: Dr. Fonseca, how are you doing?

Dr. Fonseca: Hi, Gary. Good afternoon.

Caller: Good afternoon to you. I just wanted to add that — or not add or ask the question. This is not specifically Mayo input, right? There is other inputs from other myeloma specialist for example Dr. Landgren from Memorial Sloan Kettering, Dr. Ghobrial from Dana Farber, Dr. Orlowski from etcetera, etcetera. There is a lot of different inputs into this including a lot of patient advocates. Is that correct?

Dr. Fonseca: Oh, correct. That’s absolutely correct and we should be more emphatic about that because it will be a joint effort. I think there was sort of a nuclear product that was started but I think the idea is that the knowledge that will support the recommendations that are made will be again a knowledge that will come from all sorts of places and with myeloma specialists from across the country. And I’m going to say again, I’m going to use the Waze analogy. As we know what are best paths to move forward, I think that’s what’s going to shape the content of what’s in the app.

Caller: Another point, it’s in my opinion what you guys are doing, Jenny, and you and the whole group is one of the most significant thing that’s come out of myeloma treatment in a long, long time and I’ll say this for — I have a website myelomasurvival.com. People ask me for their inputs and what they should do. One of the things I frequently say is go to the mSMART program which is all Mayo. If you can’t have your oncologist follow those recommendations and this just takes — that program adds the input from Dana Farber, MD Anderson, Memorial Sloan Kettering, Mass General and a number of other great locations and just takes it to the whole next level. To me, this is not only something that’s good for the patients here in United States but this could be just such a boon to the underserved population in the world.

Dr. Fonseca: Well, thank you very much, Gary. We’ll build on that. I think as you mentioned, we’ll do this as a global build up.

Caller: All right. Sounds great.

Dr. Fonseca: Great talking to you.

Jenny: Thank you, Gary.

Caller: Oh, great talking to you. 

Jenny: One more caller , go ahead with your question.

Caller: Oh, thank you for picking me. This is Paul Ahlstrom. Hi, Dr. Fonseca.

Dr. Fonseca: Hi. Hello. Good afternoon, Paul.

Caller: Como estas?

Dr. Fonseca: Muy bien!

Caller: I was sending Jenny text messages, please pick me. I thought for sure because we’re running out of time she’s going to pass over me. First of all Jenny, congratulations on I think it’s your 110th show.

Jenny: I think so.

Caller: Dr. Fonseca, thank you for — I remember that moment like it was yesterday when you suggested this idea and it was something that had been percolating around and you brought clarity to it in a couple of sentences that provide the leadership for this. Thank you so much.

Dr. Fonseca: Oh, no. I’m honored and thank you for the trust. I’m just thinking I probably just crystalized what obviously had become a great, great need and we see this as a way forward for the future. If we could put a particular value out for this as that patient that has a hard time traveling or that patient has a hard time getting to one of these more specialized reference center, should derive benefit from the information of the HealthTree. That would be hopefully something we objectively show as we move forward.

Caller: It’s going to be exciting to see the patients participating actively at the next level in their care and how exciting this is to see the advancement that could come in acceleration of what’s happening.

Dr. Fonseca: Yes. We want to have many more components to it of course as we move forward.

Caller:  Many years ago a doctor told Jenny, we think we can cure 5% to 10% of the patients but we’re not sure which 5% to 10% and how or why. And so what’s happening is people are getting treated and all these hundreds of permutations and that knowledge is completely lost and is not available back to a researcher that can take that hypothesis go back in and do a study on it and take it to the next level. This provides so many more data points for researchers. I think it’s going to speed the pulse of information, that pace of learning, so much faster and I am just over the moon excited about this.

Dr. Fonseca: Thank you again. Appreciate the support and the trust.

Jenny: Well, thank you so much.

Caller: All right. Well, thanks a lot and — hey, Jenny do you want to have dinner tonight?

Jenny: It is a Friday night 🙂

Caller: It is Friday night.

Jenny: Sure.

Caller: Tell me when your show is over.

Dr. Fonseca: Jenny, if I may — I think with Paul’s comments, you really should be the focal point for the credits for pushing all of this forward and it’s been just heroic amount of work that has gotten you to this point. Thank you for that too as well.

Jenny: Thank you. Well,  I’m sure we’ll have things we want to improve and change over time but we believe that we can provide great value to patients right from the get go. Dr. Fonseca, again, we’re so thankful for your participation and your initiative in this project and we’re thankful for patients who are willing to share their experience so that everyone can benefit. Truly in my mind, it’s a way that patients can be part of the cure. With that, I just thank you.

Dr. Fonseca: Thank you.

Jenny: Thank you so much for listening to Myeloma Crowd Radio and we invite you to tune in next time to learn more about the latest in myeloma research and what it means for you.

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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