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023: Using Medical Records for Clinical Trial Information and Empowered Self Advocacy

Updated: Jun 22, 2021

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Do you have a huge 3-ring binder full of medical records that you take with you to your doctor appointments? Have you ever experienced the frustration of logging into your MyChart on your phone so you can share with a provider in another system, important medical information? I personally have. Angelina Massa from Ciitizen shares with me how Ciitizen is putting your medical information back into your hands, helping empower patient advocacy, and taking it even further with clinical trial matching. If you have ever visited you know how painful this process is. Join us as we talk about how you can securely access all your medical records, securely share them with your care team, participate in real world studies, get matched to clinical trials, and even get paid for your participation - IF you choose to participate.


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Tammey Grable-Woodford

Hello and welcome to Your Killer Life, a podcast where we talk about the really real realities of a killer diagnosis like breast cancer with a focus on health, hope, and happiness as we build an intentional killer life.

I'm your host, Tammey Grable-Woodford, and I have a question for you. Do you carry around a three-ring binder full of medical records? I know I do every new doctor appointment.

Well, if you do the same thing, I am here to tell you how to ditch the binder, access all of your records, even more than I had copies of in my binder, and easily share it with your care team. So we are going to have an amazing conversation today. And I'm super excited to share this with you.

Angelina, thank you so much for joining me today. And I am excited, so excited for this conversation. Could you tell us a little bit about who you are?

Angelina Massa

Absolutely, and first, want to say thank you so much to me for having me on the podcast, so excited to be able to talk about Ciitizen and what we're doing. So really, thank you for having me today.

My name is Angelina Massa. I'm a project manager at Ciitizen, been there for almost a year now. And my background is really in operations and project management in health care startups.

And previously before Ciitizen, I had worked on developing recruitment strategies for specific clinical trials, and now at Ciitizen also work on patient recruitment strategies for different recruitment efforts and research and just running the sort of day-to-day to day operations and project management around the company. And my background, and academic background, is in statistics so really exciting to be able to work on research projects that of course use statistics. And so I'm always happy to be able to carry that with me a little bit as well.

Tammey Grable-Woodford

I love it and I love that you said clinical trials and I'll get into that a little more later. But having Lobular, I'm one of those... yes second most common diagnosis, but also still considered rare and just really starting to get some attention and clinical trials being acknowledged as an important part of that. But all right. Let's talk about Ciitizen and what is Ciitizen? Who is Ciitizen?

Angelina Massa

Yes, a Ciitizen is a health care technology company where we help patients collect their comprehensive medical records all in one place through our platform, and it's all for free and always will be for patients so that they're able to access all of their medical records from however many institutions they've seen and been seen at for their care.

We are starting really with breast cancer, so really have started in breast cancer and have worked with a few other diagnoses that were starting to launch, cholangiocarcinoma and rare neurological condition. I'm sure we'll get into that a little bit more shortly.

But we are all about helping patients access their own medical data and really take control of that and choose how they're using it. Whether it's for coordinating their care or finding clinical trial opportunities or participating in research.

So what we do is we work with patients directly to onboard them and help them place medical record requests at the institutions where they've been seen for their treatment. And then we go out and do the work to collect the medical records and make them accessible to the patient on the platform.

And then we're able to do really interesting things from a research perspective as well. Having that information on the platform and extracting key data points from the medical records is a really powerful thing to be able to do for research and helping to advance medical research, too. And only all data is only used if a patient does give consent for it to be used for research studies or things like that. So our hope is that we'll build this really empowering platform where patients are able to both take control of their medical data for their own treatment, but also use it however they would like to if they want to participate in research or share it to researchers.

Tammey Grable-Woodford

I love that. And I have to tell you, when I first heard about Ciitizen and I have to thank Peggy, at the Male Breast Cancer Coalition, because she was telling me about this and I was like, come on. OK, free? And I can get and I can access my medical records because as a patient, getting access to my medical records is sometimes a bit of a cumbersome process. And I did not get, little to my knowledge, I mean, I knew there were things that I didn't get that were that were incomplete.

They were sort of like patient-facing summaries. It wasn't the full records of data. And I joke for those of you that are watching on YouTube or those who are listening to the podcast, not on YouTube, I'm holding up what where I started, which is my little, you know, little notebook we all start with as we get this news and we're writing our panic notes.

And then just for giggles, I also have what was, which is this behemoth of a three-ring binder that I would take with me to doctor appointments. And I always at the front of it had sort of the, or and I said had already. That's great. I had the sort of like the important packet. Right? Of things that if you're not on the same system, here are the things that you're going to ask me about that you can have your team scan and put into my record here at your facility.

I went and filled out my profile on Ciitizen, and within five days my imaging had started to come in and it was kind of amazing because, you know, Angelina, what I noticed is that not only did I have the few pages that are in my binder, but I had access to all of the imaging and I'm six years out. And that was the first time that I saw my cancer. And it was... it... it was an interesting moment.

And I'm so glad to have those records. And it's also exciting to me to have the full record. And I was so amazed at how quickly it all started to come in. And so the fact that you provide this as a free service is really just phenomenal and that you are giving... you're empowering us with this information, which is... which is so cool.

So why did you guys start with breast cancer?

Angelina Massa

Great question, and it's really near and dear to all of our hearts, actually. Our... there's a lot of different therapeutic areas that we could have chosen to start in. And our founder, actually, his younger sister had metastatic breast cancer. Her name was Tania, and she unfortunately ultimately passed away from the breast cancer. And it's really powerful to, that she had actually passed away during the same year when Ciitizen was first founded. And she is really our muse at Ciitizen in terms of every day. And we all have people in our lives, even some of the people who work at Ciitizen too have had a tough diagnosis. And cancer in particular. My mom had breast cancer, and so really close to my heart as well. But we all think of Tania in particular in being our founders younger sister, it's really an important mission to us all.

And so since she had had breast cancer in particular, we thought it would be really meaningful if we started in breast cancer.

And also there are so many subtypes as well and really lots of opportunity for helping breast cancer patients access better treatments, navigate their care. And we thought that that would be an excellent place to start. And we're really happy to be able to now at this point start moving into different therapeutic areas as well. But it will always be very meaningful to the team that we were able to start with breast cancer.

Tammey Grable-Woodford

I am so thankful for that. And I'm so sorry that that that Ciitizen's founder experienced such a loss. And if I remember correctly, he also came... his background is technology. But can you remind me he was was it also in medical?

Angelina Massa

Yes. So it's been a variety of sort of different areas. But he's really amazing. And Anil Sethi, he has founded six companies before Ciitizen. So this is the seventh one. And he's really an amazing entrepreneur and an amazing leader for the company and reminds us everyday of how important this mission is. He... not all of the companies have been in health care, but one of the most notable ones called Gliimpse, also with two "i"s - just like Ciitizen. For anyone who doesn't know the way that Ciitizen is spelled is C-I-I-T-I-Z-E-N.

So it opens all kinds of... you know we get a lot of questions or people forgot. But when I first joined Ciitizen, I would tell my friends "I joined this company called Ciitizen, but it is Ciitizen with two "i"s. And they were like, doesn't Ciitizen always have two "i"s because there's two in the word. So it opens all kinds of little things like that. But so Gliimpse has the same sort of things, G-L-I-I-M-P-S-E.

And Gliimpse, actually amazing, it had been acquired by Apple and sort of powered Apple Health Records. So he worked there for a few years with that transition and then founded Ciitizen. And so not everything had been in health care before for him.

But I think in particular with Tania's loss and just going through the whole sort of treatment journey with her as her caregiver really showed him how important it is to make advancements in the medical space. So much is done with paper records just like you are showing your binder. It's just tough to manage and shouldn't be that way when we have so many technological capabilities that we could leverage. So that was really what brought Ciitizen about.

Tammey Grable-Woodford

It's amazing because even when it's digital records, not everyone's on the same darn system, and so even with digital records and getting providers to share information between hospitals and your primary care or whatever, you still encounter barriers.

So even in even though they say that we have left paper behind, the reality is there's a reason I have a whole big binder of paper.


Angelina Massa


Tammey Grable-Woodford

Not all systems talk to each other.

Angelina Massa


Tammey Grable-Woodford

So, tell us a little bit about how a patient signs up and also a little bit about data privacy and patient consent, and I think those are all in the same, because I know that for me, that was a big area of concern.

Right. Like, these are my medical records. And so they're going to be in the cloud somewhere. And and what kind of consent and am I giving anything away, anything of mine away in this process? And so let's start there before we get into how do you sign up? Let's talk a little bit about data privacy and patient consent.

Angelina Massa

Perfect. That sounds great, and it is so, so important to the company is that patients feel secure in using the platform and knowing that we have the very best privacy and security systems in place and that everything's transparent with patients, too, about how their data is being used.

So starting with the privacy and security piece we have really invested since the beginning of building Ciitizen and making sure that first and foremost patient data is always secured. And we have a very long page on our website, too, that goes in-depth on how we keep patient data secure. We use the very best security systems through AWS, Amazon Web Services, and we make sure that patient's medical records and all of their data that's being used, even identifiers just having name, email, all of that is so important to make sure that everything is really secured. And so that's always been a real focus for us as a company.

One of our co-founders, actually, Deven McCraw, she is really one of our country's health privacy experts. Amazing person to work with. Before she co-founded Ciitizen she was actually the top-ranking HIPPA regulator under the Obama administration. So truly an expert in the space and gives us excellent guidance on how to make sure today that everything is locked down from a privacy and security perspective and also from a consent perspective.

So getting into your second question around, how do patients know how their data is being used? Our... All of our data is being used everywhere by so many companies every day. And we don't always know how it's being used or how the company is benefiting from our data. We're not always aware of that. So especially with health care, you have really sensitive information in your health records, we want to make sure that patients always know how their data is being used and empower people to really make the choice on whether or not they want to share their data with different parties.

So first, during our onboarding process, which we can get into as well, later when we're talking about how people can sign up for Ciitizen. But right at the beginning in our onboarding process, we will ask patients if they do want to do what we call our blanket research consent. So an overall consent to whether they want to contribute their information in their Ciitizen profile once we collect those medical records and contribute that to research studies. So those would be with Ciitizen's research partners who are interested in running studies with our patient population, a group of patients who we have collecting their medical records. And really, we like to think of it as a community of patients and researchers who are all working together to advance medical research, which are so important.

So patients have the choice up- front during onboarding to decide if they want to do that or if they don't. Either way, the platform is totally free for patients to sign up and use to collect all of their medical records into one place on the platform and coordinate their own care. So if they need, like the electronic version of the binder, you want to just have that and not share it for anything else, that's totally fine.

So we're really happy that we were able to set it up that way so that patients totally have the choice. We're not only allowing patients to sign-up if they are sharing their data for research. Anyone is able to, which is great.

But in addition, we're also having... this goes to your previous point around just being able to get all of the information from different systems that don't necessarily talk to each other in one place. Of course, like each medical institution really has great privacy and security for their own information and will often have the patient portal where you can log in and see your medical records.

And so we often get the question from patients why, you know why they have to sign up for this system where they could be... you know, they're worried about privacy and security and just wondering why they would have to do this instead of just using what's already in their portal. And the answer is really that, like you said earlier, you're not able to look at every system to talk to each other. So it's nice to be able to work with Ciitizen and put in all of your medical record requests across the different institutions. You can see that a lot of patients have either moved cities over the years or have gone to several different institutions even within their own city, or have had genetic testing, for example, at a different facility. So we're able to get all of that information into one place and just securely store it there and allow patients to choose how they use it from there.

Tammey Grable-Woodford

You know, it's interesting because I remember at one point with a new primary care provider at a new facility, and it's not too uncommon. I'm I'm about an hour and a half outside of Seattle, and most of my care was in Seattle. So when I'm actually, you know, not having cancer specific treatment, I was loca