How Can Your Data Sharing Improve Cancer Treatment?

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Patient data is invaluable to drive cancer research and treatment forward, and with a few clicks patients can become actively involved in improving cancer care for all. CLL survivor and patient advocate Larry Saltzman, from The Leukemia & Lymphoma Society (LLS), discusses the launch of an exciting new program to benefit patients and their healthcare team by using your electronic medical record to allow experts and researchers to obtain insight in patterns of survivorship, understanding side effects, and successful treatment methods. Larry also explains how tracking patient care is made easy, virtual and anonymous and shares how patients will be protected throughout the program. How can you participate? Watch now to find out and help advance the knowledge base for the cancer community.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr, and welcome back to Dr. Larry Saltzman from Sacramento, CLL patient for about eight years now and also the Executive Research Director nationally of The Leukemia & Lymphoma Society.  Welcome back, Larry. 

Dr. Saltzman:

Thank you, Andrew.  It's a pleasure to be here. 

Andrew Schorr:

So first of all about you, so you've been dealing with CLL for a number of years, and you're on combination oral therapy now, and how are you doing?  Because you've been a marathoner, and you've been a very fit guy over the years.  CLL threw a monkey wrench in that.  How are you doing now? 

Dr. Saltzman:

Knock on wood, Andrew, I'm doing very well.  I'm taking both ibrutinib (Imbruvica) and venetoclax (Venclexta) in combination, and as of this past April, based on peripheral blood, minimal residual disease testing I've been clean and clear for a year now, so apparently in remission.  And we'll confirm that this next month with a bone marrow aspirate for some more sensitive MRD testing to see how deep the remission really is.  I'm doing fine.  Thank you. 

Andrew Schorr:

Oh, that's great news, Larry, and thanks for being a regular on Patient Power.  But let's talk about your role with The Leukemia & Lymphoma Society, a partner of ours in trying to really advance knowledge.  So, first of all, what's the gap in knowledge where we patients can help? 

Dr. Saltzman:

Andrew, what we are trying to do is to put together long-term longitudinal studies on outcomes of cancer patients.  And the gap in knowledge has been that many academic institutions currently have their own databases which they look at internally for their own treatment patterns and protocols, however, there really is a lack of sharing of that data around the country so that these silos can be compared. 

And it may be that academic centers are sharing their data, but certainly 80 percent of blood cancer patients are cared for in community settings.  And the data from these community settings, as we find it, are really not being shared or pooled to look at combined outcomes or survivorship patterns over time.  And we are trying to solve that problem. 

Andrew Schorr:

Or understanding side effects people might have as well. 

Dr. Saltzman:

Or understanding side effects, or how many people like me are actually being treated with combination therapy that is being successful outside of a clinical trial or academic center? 

Andrew Schorr:

Okay.  So nowadays many of us have access, and it's our right, to our medical record electronically.  We can download it on our computer.  You can look at it perhaps from two different medical centers that I go to.  So how can we with our data help LLS?  What are you launching where we can be partners, if you will? 

Dr. Saltzman:

So many people, I'd say a majority of people who go to their clinicians especially academic centers are now given to what are referred as patient portals so access their records, and by law, Andrew, we, the patient, own those records once the clinicians share those with us, meaning we can a carry them on mobile devices, we can print them, we can share them with whoever. 

The Leukemia & Lymphoma Society is creating a platform that will allow us as patients to share those portal records with The Leukemia & Lymphoma Society.  And we do that by asking the patients to join our LLS community, which is a social-based patient advocacy network, and through that network they would share with us the credentials of their portals, and this could be one portal, or in my case I have several portals that they can share with. 

And then our technology platform would use those credentials to essentially go in and download the patient's record, not only on the day that they share them with us but continuing to look for new test results or new records down the road.  And we like this platform, because it is not then dependent on the patient remembering when they had a new lab test or a new record pop up to come back and notify us to say, oh, I have something new.  We will monitor these records ongoing in a de-identified, anonymous basis to our researchers and then look for patterns and outcomes be they positive, meaning better outcomes, or be they side effects of care that we should be aware of. 

Andrew Schorr:

Okay.  Let me go over that.  So, first of all, so everybody understands, you're launching this in two clinical areas first, chronic lymphocytic leukemia or CLL, which you and I live with, and then what's the other one? 

Dr. Saltzman:

Yeah, so we're also launching it for Waldenstrom's macroglobulinemia, which is another variant of lymphoma, some say a B-cell lymphoma, which is in the family of CLL and SLL as well. 

Andrew Schorr:

Okay.  And I just want to go over this process.  So what the LLS will have is a platform and a request to those of us in the community where we give permission like our password and name, account name, whatever it may be, so that you can have access like we do to our electronic medical record on an ongoing basis. And you'll pool that information with other people who give permission in the community to look for important insight.  Did I get it right? 

Dr. Saltzman:

Andrew, that's correct.  And I should add that this is under the umbrella of an Institutional Review Board.  A user who shares with us will be providing their consent through this document, and we list and spell out exactly what our responsibilities are and the privacy aspects of this, which we take very seriously. 

Andrew Schorr:

Well, that's what wanted to talk to you about.  When you talk about someone's medical record it's real private, so you're assuring us that there's heavy-duty controls so that we can help advance research and understanding for ourselves and the community but feel protected. 

Dr. Saltzman:

Yes.  So the data that we collect will be stored in a highly secured encrypted manner, and the data is only available to researchers after all of the identifying information is stripped away.  So the researchers have no idea who actually they're looking at.  They're just looking at patterns of care. 

Andrew Schorr:

Now, how can I make a difference?  If I understand it right, you have silos of information with different academic medical centers perhaps, but most people are treated at XYZ Oncology Clinic maybe out in the hinterland, and so that full understanding of what's going on for those of us with a given condition, it just isn't there right now. 

Dr. Saltzman:

Correct.  So let me give you an example.  In our case with CLL, there are essentially two avenues that doctors can go down to treat us on an initial basis.  One would be conventional chemotherapy.  We all know about FCR or BR as an example, and the other way would be targeted therapy using an oral drug such as ibrutinib.  We really have very little idea what path is being taken now on a regular basis either at academic centers or in community centers.  And it's important to know what's being used, how it's being used, and what the outcomes are.  We have no real idea about this, and that's one of the questions we're looking at. 

We're looking at a set of initial questions with CLL.  One is, how long are people on wait and watch.  The second question is, are people actually having their genetics or mutations profiled before they're given their therapy, and is the therapy then tailored to that profile?  The third question is, are more people getting conventional chemo versus oral targeted therapy?  And the fourth question is based again on genetics, and is a drug like ibrutinib being used primarily for patients with 17p deletions? 

These are the initial four questions we're trying to answer and we feel that with pooled data we'll have a much better handle on that over time. 

Andrew Schorr:

Right.  So important.  We should remind our audience that Larry is Dr. Larry Saltzman, and obviously he has a medical background, so when you start talking about these questions he's really into it, but the whole team at the LLS is. 

And my question to you, Larry, is, you know, a lot of people say, well, that's somebody else's job.  I'm fighting leukemia, and, you know, why should I go to the trouble, this extra step to do this?  How does it help me, and why do I have to feel like I have any obligation to the community? 

Dr. Saltzman:

Andrew, I don't know that we each have any obligation, but I do know that we are trying to help one another, and I think we do have a community of patients who really do want to make sure that they are contributing and by contributing are receiving the best information through our community platform.  Any results that we receive on these projects will be reposted within the community within the specific discussion groups, and so we will be making public everything that we find. 

And I think that it's inherent in our ability to help each other that makes this a reasonable project, plus the fact that because this is an opted-in situation we know what we are helping with our data as opposed to some projects which are frankly looking at data without us even knowing that that's occurring.  And we at LLS being an advocacy organization really want patients to opt in and understand that they're helping themselves and their like-minded patients. 

Andrew Schorr:

Right.  Well, I think certainly on the case of CLL but I'd say with Waldenstrom's too, we have some very engaged communities, and people are getting it that knowledge is power. But it's not just your own knowledge, but it's now working with the LLS so that we can have this overview knowledge and fill in these gaps that we talked about earlier.  Well, just to go over the process thing, so join the LLS community for our illness. 

Dr. Saltzman:

Correct. 

Andrew Schorr:

And then we're given the opportunity as you launch this to opt in, if you will, and then the process, we're guided through the process so that you, the LLS, have access to our electronic medical record whether from one medical center or more than one, correct? 

Dr. Saltzman:

That's exactly correct.  And actually we encourage people or patients to share with us all the portals that they have access to because although we have blood cancer, and that's foremost on our mind, we are total human beings, and we have other medical issues that perhaps we're dealing with.  And, frankly, without seeing records of comorbidities, again, we have no real idea what the survivorship issues are, so we are trying to collect as much and as broad a data set as we can. 

Andrew Schorr:

Right.  I can think of that in my own case.  So I might see my hematologist all about my blood counts, but if I get a sinus infection, I might see my general practitioner at another center.  Or somebody might see a cardiologist at another center.  Suck in those records, give it to Larry and the team and advance knowledge for all of us. 

Well, Larry, I want to thank you for your personal leadership but also the institutional leadership from The Leukemia & Lymphoma Society, and may this really result in such important insights so that we can all do better long term.  I want to thank you for doing that. 

Dr. Saltzman:

You're very welcome, Andrew.  Remember, knowledge is power. 

Andrew Schorr:

Okay.  And I love to say that, knowledge can be the best medicine of all, and it really fits in here.  Dr. Larry Saltzman, fellow patient, really working for us with The Leukemia & Lymphoma Society.  Larry, all the best.  And in Carlsbad, California, Larry's in Sacramento, I'm Andrew Schorr.  Thanks for joining us.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on July 25, 2018