Exploring Digital Health Technologies in Federal Research

In this episode of The Buzz, expert guests delve into a new white paper by the ACT-IAC Health Community of Interest titled 'Digital Health Technologies in the Federal Health Research'. The discussion covers the intersection of technology, health, and research, particularly focusing on the use of wearables, mobile apps, and in-home monitors to enhance clinical and analytic research. Key speakers include leaders from academia, government, and industry who share insights on the collaborative efforts required to integrate digital health technologies into research, as well as the future applications and challenges in this evolving field. The episode also highlights the significant impact of digital health technologies on large-scale research programs like the National Institutes of Health's 'All of Us' research initiative.

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Intro/Outro Music: See a Brighter Day/Gloria Tells
Courtesy of Epidemic Sound

(Episodes 1-159: Intro/Outro Music: Focal Point/Young Community
Courtesy of Epidemic Sound)

Chapters

• 1:42 Exploring the Intersection of Technology and Health
• 4:36 The All of Us Research Program
• 8:23 The White Paper Collaboration
• 15:15 Future of Digital Health Technologies
• 24:20 Ensuring Usability
• 47:23 Final Thoughts and Conclusion

Transcript

Yohanna: [00:00:00] Hey there and welcome back. I'm happy you're joining us today. In this episode of The Buzz, we delve into the intersection of technology, health, and research with a new white paper. My guests are industry experts who share their experiences and insights on the collaborative effort required to work together, address challenges, and discuss the future of digital health technologies.
Yohanna: So get ready to be informed and inspired.
Yohanna: Thank you so much. Welcome back to the Buzz. My name is Joanna Bias. I'm your host. Welcome to this episode where we are going to explore the intersection of technology and health and research. Um, we're gonna be featuring a new white paper developed by the Acti Health Community of Interest. Uh, it's titled.
Yohanna: Digital health technologies in the federal health research. Um, this report explores how tools like wearables, mobile apps, uh, [00:01:00] in-home monitors can enhance clinical and analytic research with a special focus on the National Institute of Health's, all of us research program. And I'm here with wonderful, smart people who have been working on this incredible report.
Yohanna: All right, so joining us today is. 
ZHEN: I'm the president and founder of Chiante, a woman-owned small business and science and technology consultancy, developing digital health platform for children and parents affected by A DHD and autism. I'm also the knowledge capture chair for ACT Diet, health, community of Interest, leading the strategic planning of health related projects.
ZHEN: Strengthen collaborations and thought leadership among academic members on this white paper. I serve as the subcategory lead for the digital health mobile apps. Uh, in my spare time, I advocate for [00:02:00] and support charities serving children and youth with, uh, special needs. I also, um, uh, support and lead, uh, my local scout group.
BEN: My name is Benon. Uh, I serve, uh, as the industry lead of this digital health research project. I'm currently, uh, the strategic advisor at Neera, uh, business IT consulting firm, uh, focus on federal government marketplace. Prior to that, uh, I had served as a chief technology officer at, uh, precise, uh, for the last seven and a half years.
BEN: Uh, prior to that I worked at Oracle, SRA Nielsen. Uh. Um, besides my full-time job, I'm also an adjunct professor at George Mason University, uh, teaching graduate level class on big data and advanced, uh, data analytics. 
LEW: So I'm Lou Berman. I am now retired formerly of the All of Us Research Program where I served as a branch [00:03:00] chief for Digital health Technologies and data.
LEW: I also served as the project officer for the Center for Linkage and Acquisition of Data and the Technical Monitor for Migration project. My role on this project was to be the government sponsor. We had other participants from the All of Us research program who served in a variety of capacities to inform this project as it moved forward.
Yohanna: All right. So I'd like to start from the beginning. Why was now the right time to explore, uh, digital health technologies in the federal research space? 
LEW: Those. The All of Us research program has been up and operating for about seven or so years now, and it's beginning to explore digital health technology.
LEW: And in fact, over the last several years, the program has made some considerable investment in these types of technologies. And as an example of this, um, one aspect of the program that we've been focusing on is Fitbit devices and bring your own digital health technologies. Many [00:04:00] people wear Fitbit devices around their wrist and they, they're aware of what they use to track, for example, physical activity and sleep and things like that.
LEW: And so this has been a great mechanism for the program to start bringing in this type of digital data. And we've um, got many of our participants who are wearing these devices and contributing. All of that data. But in the meantime, while we've been collecting that data, there's been a proliferation of different types of devices that have been built for monitoring many different things.
LEW: For example, for example, um, environmental data collection is an area that the program's really interested in, and there are sensors now that you can plot down in your house and you could measure temperature, you could measure, uh, humidity. You could measure barometric pressure, but you could also measure lots of environmental exposures in your house, in your house that you may not be aware of.
LEW: And those are things, those types of exposures are really important for research studies so that we have a complete picture of somebody's health. So from the [00:05:00] perspective of the All of Us research program and for that matter, um, writ large, if you think of research and the types of research that people wanna do, particularly around exposure, behavioral health, physical activity, sleep, things like that, these kinds of data bring lots of, uh, these kinds of devices.
LEW: Bring a lot of convenience for a program like All of Us, and for that matter, any kind of research program, because it's typically very difficult to collect data on sleep, for example. You know, if it's somebody, something that people do in the privacy of their own home, um, it's very difficult to collect data on physical activity because you can't go out and monitor thousands of people who were engaged in walking or riding a bike or running.
LEW: So the proliferation of these types of devices and the availability of them makes it much easier for a program like All of Us or other research studies to acquire lots of data on the activities that people are involved in, kind of exposures that they have, and do it in a way that's less expensive than putting people out [00:06:00] into the field study, you know, study researchers at the field to monitor what people are doing.
LEW: So, um, with all these devices that are being built. The availability of them avail it, it opens up a lot of new possibilities for research programs and that's, that's what's really, I think, exciting. And that's why it's time for us to do it. Now, 
Yohanna: reviewing the, the paper, it's a, it's an impressive paper. Good job on all of those words.
Yohanna: You guys are trying to, to collect at least a million the data from a million US users. 
LEW: All of us research program is trying to enroll a million people across the United States. It's the largest study that's ever been conducted in the United States, and one of the things that makes this study so special and so different from many of the other studies that are conducted in the United States.
LEW: Is that the focus on this study is people who are traditionally underrepresented in biomedical research and underrepresentation, in the case of all of us, is [00:07:00] along many different dimensions. It could be along race, ethnicity, it could be due to income, it could be sexual and gender minorities. It could be rurality people who live in rural environments.
LEW: So the focus of the study is to ensure 80% of study participants are individuals who meet one of those, at least one of those definitions of underrepresentation. 
Yohanna: So then what was the initial, um, I guess what was the initial problem that sparked. The collaboration for this white paper, how, how was it that it started?
Yohanna: What was, I really wanna just wanna get nosy. What was the, what was the process for this? Why did somebody say like, you know what, we need a million people. 
LEW: Well, that goes back many years. The, the concept behind the, the study, the All of Us research program goes back to some work that Dr. Collins, the former director of, had been
LEW: diseases and. You have to bring in a very large population of people because those diseases, those illnesses occur with very low [00:08:00] frequency. So you need many people to try and study those kinds of diseases. And then the program evolved, uh, around 2016 when at the time Vice President Biden started the Cancer Immune Shot Program in the Precision Medicine Medicine Initiative, of which all of us became a portion of that initiative.
LEW: We've been. What's interesting about this engagement between the government, NIH in this case and act, I act in industry, is that it's kind of unique, um, as all the folks on this, this, um, uh, video call. Now, when you try and engage the federal government industry, usually there's a procurement that goes along with it, and those procurements involve a lot of secrecy, right?
LEW: Like, you know, the government is not allowed to speak to industry about what's going on. What's great about working with ACT iac, I think this is really a unique environment to bring along the best people from industry, many companies and organizations and occasionally academia, along with the government to [00:09:00] solve a very specific problem and do it in a space that's safe.
LEW: That's, that's really what the beauty, I think of ACT IAC is so we can, we can kind of solve these problems in. The government. This work actually was, was, uh, started about two years ago. Todd Vy, who's very well known in the federal health space and industry, um, contacted me about two years ago to do a project, um, with the community of Health between act IAC and um, NIH, and in this case, the all of Us research.
LEW: We had a really great engagement between all of us and ACT iac, and then we decided, oh, I guess about a year ago or so. Why don't we have another question that we'd like to answer around digital health technologies and Todd and Renita and the rest of the ACT IAC group were really great in sponsoring this activity and finding great partners from industry to work with us.
LEW: And build out this, um, white paper on digital health technology. So from the, from the government side, um, I [00:10:00] always looked at it like, this is amazing 'cause we get to work with really smart people from industry. We get to work in a really safe space. We don't have to put a procurement in space, uh, procurement in place in order to find and do this work.
LEW: Everybody kind of collectively and at the same time learns a lot of things. There's a lot of give and take on how to move it forward. So we came up with an initial idea and then ACT IAC and the rest of the team really helped shape and inform how to move it forward. It was, it was really a great collaborative.
LEW: This is the second time we've done something like this with ACT iac. 
Yohanna: Yeah. That's good. That's good to hear that I, that's what I've been, uh, noticing. I'm new to act, but I've been noticing folks really feel safe here. They feel like they can. You know, connect network. Um, so that's really good to hear that you guys got together to do, to do this white paper.
Yohanna: Ben, would you like to, to speak to something that's, uh, personal or professional in your life that you've, that you've seen? 
BEN: Sure. Sure. Yeah. So my, actually, the aha moment is really [00:11:00] just, uh, during the, uh, COVID Pandemic Pandemic, right? So a lot of, uh, telehealth, uh, platforms, the devices were made available so that the people, uh, they don't have to go to doctor office or hospital for their appointments.
BEN: Matter of fact, uh, the hospital to doctor office are short shut down, right? So the doctor could do the pause, do the symptom chat, uh, other measurements remotely, right? That may make me think about, realize, right? So the digital health stopped being optional. It can be a. Becoming our lifeline. So 
Yohanna: I agree. I agree.
Yohanna: I think the pandemic really helped us see and see things differently and, and get really creative, like very quickly, what does digital health mean to you? Not as a title, but more as a practice on the ground in people's lives. I feel like we've already kind of touched on that, so if you guys want to expand on that a little bit more.
Yohanna: That's, 
LEW: yeah. Uh, you know, I, I led a, uh, the digital health technology work group. All of us for the better part of a year, year and a half, [00:12:00] something like that. I forget. And when I, um, started sharing the group, the first question I asked the group was to come up with a, a definition of digital health technology.
LEW: And um, and it was a really interesting conversation because we couldn't agree on a definition of health, of digital health technology because it meant different things to different people. I think I tended to look at it narrowly. And I mean, it's right or wrong, but I looked at it a little bit narrowly, more like a scientist, like let's come up with a precise definition for what these words mean.
LEW: Right? And uh, to me it was focused on devices. Um, but other folks in the group really didn't feel that way. They had a much broader definition of digital health technology, and they included things like software and apps and all of that. So. You know, I, in some sense, maybe it belongs to the eye of the beholder, what the definition of digital technology is.
LEW: Not that there's a right or wrong, you can make it as narrow or as broad as you want it to be. Maybe that's, maybe that's the right [00:13:00] answer to the question. I'm not sure. 
Yohanna: I agree. I agree. I think a lot of folks think, um, we're gonna think about it differently. In different ways, uh, demystifying the work and making it relatable for people that are unfamiliar with federal health research and how, how technology is already like being used.
Yohanna: How is this changing the game? How is this like, that's something that I'd like to know since I don't have any, I don't wear wearables and I, I didn't know that there was so many things out there. How, how do you all see, see, you know, like federal health research and, and technology kind of. Being used together.
Yohanna: You 
LEW: know, this kind of for me goes back to maybe my earlier answer where the proliferation of these devices, if, if the cost of the devices comes down, enables research that's not possible before. And just taking as an example, physical activity, you wouldn't be able on a research project to send many people out to the field to observe people walking [00:14:00] during the course of the day or running or engaging in physical activity.
LEW: On the other hand, if they wear a device, it's a very easy means to collect data that people are doing just during the normal course of their, their life. So it's en, it's enabling research that really wouldn't be possible otherwise in doing it at scale and with means that would know, would, would really, they're just not possible.
LEW: So I think that's the one of the exciting things about the practicality of these devices. And so if you can bring the cost of the devices down. If the devices are built in a way that they're reliable and valid, um, and you can distribute them easily and they don't produce harm to participants, and the participants understand what they're agreeing to do, then you've got a real opportunity from research.
LEW: From a research perspective. 
Yohanna: Yeah. Do you, do you think that there's a little bit of a, a learning curve with something like that? I guess this question is for, for Zen, how, how do you ensure that these tools are usable for all populations? People that [00:15:00] aren't very tech savvy, folks that are super tech savvy, and also in communities where, you know, they're historically excluded.
Yohanna: How do you make sure that, that, that technology, you know, they understand it and, and they can provide the data that you guys need? 
ZHEN: Actually, uh, the realization, the power of, uh, digital technology. For example, one, uh, example is the use of, uh, wearable device in Parkinson disease, uh, care and in some other situation, for example, pediatric, uh, patient care where the young patient cannot accurately voice their symptoms.
ZHEN: Hospital monitoring has been in place for decades. We have been using that. But how, how about out of the hospital in the real or when they actually encounter the situation where they have difficulty with their health. So that's where the [00:16:00] technology, digital technologies specifically, can bridge the gap.
ZHEN: So be in between the clinical visits. For example, there's a very limited snapshot right now for the conditions. But, uh, as be mentioned, mental health, they require continuous monitoring. Uh, if you miss that moment, uh, how about the just in time intervention, we can actually help those patients, uh, is a moment lost.
ZHEN: So that's, uh, why, uh, after, uh, decades of, uh, doing. Biomedical research in the lab on cancer biomarker. I turned myself into a entrepreneur, a startup startup to focus on digital technology development for, uh, children and family with, uh, developmental or mental health issues. And that's where I hoped can [00:17:00] have more precise treatment options for those patients and for better drug development.
ZHEN: I also want to bring to, uh, attention, uh, as Lou mentioned, the utilization of, uh, digital technology in remote clinical trial, uh, for rare disease. So, uh, those patient living, uh, uh, far away from the major hospitals with the digital health, uh, platform and clinical trial, uh, data collection, for example, in home.
ZHEN: Clinical sample collection boxes, they receive email, uh, they can continually contribute to the research, uh, and then, uh, share the data in a very secure way. So those are the two examples we, I can think about, uh, with a more inclusive and real [00:18:00] world impactful applications of, uh, digital. Technology in my own life.
ZHEN: A lot of layers 
Yohanna: you would think that like, oh, we're just gonna collect some data and figure it out, and research. Like, no, this, this has a lot of Wow. That's really interesting. Yes. Um, when it comes to the process of the white paper, what was something that was, I guess, surprising, uh, and or a, a challenge that you felt was surprising and, and with developing, uh, the white paper, um.
Yohanna: How did, how did your team solve it, Ben? 
BEN: Uh, I, I wouldn't say I was totally surprised with the challenges, um, but we had a relative large groups, uh, 20 plus volunteers, uh, from different consulting product companies, our brought ins a years experience. Of course our amazing, you know, uh, sponsors and advisors from all of us, including Lou, um, and others.
BEN: Uh, digital health is such a large topics and there are so many [00:19:00] technology out there, right? And how we're going to tackle this, right? So it's such a large group, how we're gonna go divide, conquer, um, it can be daunting at the beginning. As an industry lead to this project, I don't realize that I actually was a project manager to this project, withheld from some great, uh, solid leaders within the team.
BEN: Uh, we quickly put together a list of categories for people to vote. The list was originally more than 10. We realized there's no way we could tackle all of them during the half year, uh, timeframe we had, uh, with the guide from LU and reduce it, uh, to five, which include wearable devices, uh, implants, uh, uh, in-home monitoring devices, environment factors, mobile apps.
BEN: We put together, uh, five categories as working groups for people to sign up and nominated, uh, working group, uh, leads. I wanna call out our working group leads [00:20:00] here, uh, as you are. Amazing. Uh, then it's here. Um, she led the mobile app group. 
ZHEN: Thank you. 
BEN: Then we had Asha Wilson from Precise Software Solution.
BEN: She led the wearable device group, Cameron, uh, Morgan. We from RO Consulting that in-home monitoring device. Then the tar, uh, Tara Chopta from IBM led the implants group. I led the environmental groups, so large team will together on a weekly basis, and each working group also meet separately the five team leads.
BEN: Uh, we meet regularly as well, uh, just acting as a scrum of the scrums, um, to discuss status, set the team's directions, and next steps. We also had, uh, three, uh, stage gate reviews with Lou Bass and other edge stakeholders to make sure that we're on the right track and on time. And we did, [00:21:00] we were able to deliver the final reports up around six months, given and take, there's so many great research ideas coming out of our team.
BEN: I feel I learned so much. It was a pretty fun, and I would say that it's a pretty success project. 
Yohanna: Wow. What a big team. Everyone had like a, has a, has a unique background and that I think helped shape the tone, you know, of the paper. Can you guys speak to that, maybe like how your background helped you shape the tone of the paper?
ZHEN: That's a great question. And to begin, and with the, uh, answer, uh, I actually want to point out, uh, as we, uh, focus on the health, there's a new field called customer experience. Uh, customer user experience, uh, emerging. So, uh, yes, that's the focus. How we ensure those tools are usable, uh, for all [00:22:00] populations and design and develop the tools, uh, according to the, uh, user's experience.
ZHEN: Uh, iPhone is a perfect example. So, uh, how they develop the product, make it, uh, very simple. And, uh, user centered. So, um, uh, go back to your question, especially how we can ensure the digital technology tool, uh, usable for the all population. First, uh, I believe health cannot be achieved without inclusivity in mind, uh, to ensure the digital health technology are accessible, uh, to all population.
ZHEN: Including the, uh, community. Normally we cannot reach them. Um, it's a partnership. All of us research program was named in such to highlight the, uh, ultimate goal [00:23:00] it is to serve all of us, all the population and community. So collaborations such as the one we. Present in this, uh, white paper is indeed how the biomedical researchers and the policymakers are actively working together towards the inclusivity goal.
ZHEN: So, um, there are few ideas, uh, in the, uh, current field that we are focusing on, such as, uh, I mentioned earlier, community center design. Then equitable data representation, uh, like Lou mentioned earlier, and how to make the technology affordable and accessible. The literacy and digital literacy training, education.
ZHEN: And then, uh, finally the regulatory piece, how the policy [00:24:00] and the current, uh, regulations support the. Properly secure use of, uh, digital technology. So those are the five aspects I want to share as thoughts. Uh, to, uh, stimulate the discussion from different partners. 
BEN: Okay. All right. So I, I guess for me it's more, um, I, I don't have a health background, like a, like a education background that you out did, but, uh, but I, I did, uh, working at FDA for last eight years, I actually, altogether probably more than 10 years, so I have firsthand experience, you know, working with FDA, um, you know, peoples over there.
BEN: To, to kind of, uh, see what they've done. And, uh, you know, the, of course, I, my help is more on it side, but I've kind of working with the scientists at FDA, um, you know, uh, reviewers at FDA to, to kind of helping them develop applications for them to conduct their, uh, scientific research, the, you know, uh, clinical reviews and so on and so forth.
BEN: So I [00:25:00] quite learned quite a bit from there. And definitely that experience bring me into, this is really. You know, um, digital health is part of that. A matter of fact, uh, FDA has, uh, in the center. For, uh, you know, regulated the medical, uh, the, the digital health technologies. So that's actually the kind of my perspective bring to this.
BEN: And because I kind of, some working with FDA from that perspective kind of contributes some understanding of how medical device works and how, you know, the, the government you use micro device conduct some research, so, so forth. 
LEW: Yeah. My, my background, um.
LEW: Public health, and I've spent most of my career, uh, at NIH and CDC. So I have a, a long career working in a health environment and doing selection of, of health data across many different studies, both at the national and subnational level. And, and, um, and so for me, I've, I've looked at the [00:26:00] how you design studies develop protocols, the complexity in building them, the cost of these studies, and in the early, maybe late.
LEW: 2010 or just maybe just before that, a couple years before that, I was at CDC working on the National Health and Nutrition Examination survey, and we started integrating, uh, visual health devices into our study. We had blood pressure devices that we were using. We also started using actograph monitors, which were the really, the early research grade devices that were used for physical activity assessment.
LEW: And while all of that's going on, I'm an active bike rider. And bike riding is just a mass collection of data between biking and running and skiing, which I do as well. It's just constant data collection with biking being probably the one that's most prevalent for data collection. So for me it's always just kind of fun to look at all this data and see, uh, how you can improve your [00:27:00] own personal performance or.
LEW: These devices really provide a tremendous amount of information and data to help you improve in the things that you have an affinity for. And you can see how that can parlay itself, you know, right over for digital health studies. And, and so for me, the interest is from the, the technology side is how do you build and integrate technologies and software from the analytics side?
LEW: How do you data reliability and valid really high grade data rigorously. Can be used for research and discovery to make a statement. And it's one of the things that I really enjoyed working. Um, at CD when I was at CDC, one of the things I really enjoyed the most is the rigor behind those studies. And for us to include devices into studies.
LEW: They had to be studies that not only had, um, regulatory compliance, but they were studied. They, there were devices that had been tested rigorously, so you [00:28:00] understood what was being collected off the device. How it could be used. How it could be used analytically. How far you could push it or not push it from a research perspective.
LEW: So all of those kinds of challenges were kind of intriguing to me personally and uh, reasons why I wanted to kind of be in the space to use digital health technologies from a research perspective.
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Yohanna: I really like everyone's backgrounds. I like, I like the journey that brought you here.
Yohanna: I'm wondering if there were any strong debates, because you know, you have different people from different places. Were there any strong debates or, um, I guess disagreements maybe that helped make the paper stronger? 
LEW: I would frame it as debate, um, or disagreements as much as. Almost following the scientific process.
LEW: I, you know, when big groups like this get together, it's hard to, to herd everybody. And I think we were really fortunate that there was a common mission, a common interest in, um, Ben did a really outstanding jobs from a project management perspective [00:30:00] in leading the, and that's not easy to do when you have so many people from different.
LEW: Different companies who have pressure on them, by the way, you know, day in and day out, no one on this activity got paid to do it. So they volunteered to participate in some, in something like this. So, you know, just from that perspective alone, people committing their time and not engaging in argument and disagreement is quite a testament to people's interest in solving the problem.
LEW: And then leadership and I, I always, I'm a strong believer in leadership. There are people who, you know, kind of rule with an iron fist and there are people who rule in a very pleasant, um, uh, fair way and really try and bring out the best. And I think, um, Ben really did a great job of doing that. One of the things that I found, the, the entire activity was how it evolved over time.
LEW: And the evolution of the activity was kind of interesting because we came [00:31:00] up with a kind of a broad outline for what we anticipated we would do, but really had no idea how the catalog we were gonna build would evolve and what would be the major subgroups that, um, came out of this. And one of the activities was around implantable devices, which I, to be honest with you, when we started the activity, I hadn't even thought about that.
LEW: That didn't even strike me as something that we would even consider. I thought it was a really positive discussion, and that's one of the beauties of the, of an activity like this. It's a place where you can brainstorm and you can really think about the entire, you know, so the entire space, what really should belong here.
LEW: And I think it takes, um, a group of people who are kind of focused on one specific area with an interest in solving a problem. And, um, and because of that, it ended up becoming much better than I ever anticipated. 
Yohanna: Yeah, that's really rare. That's so rare. 
LEW: Yeah, it, it 
BEN: really is. I have another example, uh, Lou, to kind of the [00:32:00] adding to the involvement involving of the, the scopes.
BEN: Right? So it's, uh, you know, particular to my working group, which is, uh, environment factor. So, uh. My work, uh, you know, the mission is really research the environment factors that impact, uh, the, the people's health, right? So recommend all of us to adopt this factor to roll out to the participants. The idea is, you know, the program participant, they share their health, uh, measurements, well, the variable devices.
BEN: Now, if they can share their environment factors they can exposed to, they're exposed to. In the same time, right? Then the health researchers could potentially correlate the health issues with environment factors, right? So providing a new perspective to conduct health science search. So what we did, our team did was, hey, we went ahead to identify 19 environment factors such as air qualities, airborne, aller, you know, uh, green gas, uh, soil, c uh, ca, soil characteristics, uae, uh, UAE radiation, so on and so forth.
BEN: And [00:33:00] was on the past, they had researched the impact to health of those environment factors and also what equipment we'd be able to, uh, use to measure them. And when so realized, gosh, there's so many devices, were either so stationary and heavy and expensive, there's no way for people to carry them all along with them.
BEN: Or some of our others, although they're small, uh, people could carry, but there's, uh, not so e uh, not so accurate. The team went to through the health debate. Matter of fact, they really, what we gonna do are we continual re recommend those, uh, devices for, for all of us to, to purchase the rollout to the customers, uh, to the participants.
BEN: Or we gonna pivot. We, we decide eventually to pivot, right? To research on. Public available data services all there, right? So there's tons of environment, data service, um, which you can query from. Then we decide, kind of recommend, uh, you know, potential mobile device, a mobile app so they can collect people's geolocations and use geolocations to query [00:34:00] those, uh, data services to get environment factors right?
BEN: Send, um, uh, since the, the participant volunteer, they share their health data, volunteer health ha uh, share their health data. Then, and all of us has strong, uh, personal, uh, you know, secured and privacy measurement in collecting people's personal data. We thought, uh, the participant would be okay to share their geolocations together with their health data, right?
BEN: So we check with Lou and Bass and they agree with that. That's how we kind of put this one into approach, into our recommendation. So that's actually, you can tell the pivot, we did not even think about that, and then we can pivot to through this account. There's a mobile app and you can use public health service available there.
BEN: It's quite a bit of pivot. 
ZHEN: And so, uh, if you don't mind, I will add one point, uh, since, uh, Ben mentioned, uh, mobile app. Uh, so at the very beginning, mobile app was considered, uh, [00:35:00] one of the five subgroups as a standalone, uh, technology to, uh, collect. Digital house data, but also as Ben mentioned, as the project evolve, uh, we realized that all the other, uh, subcategories can also funnel into a mobile data, uh, the data, data collect into a mobile app platform, and, uh, streamline the, uh, customer's experience, uh, on one platform to get all the, their own data.
ZHEN: So, uh, that's a real, uh, word example, uh, of, uh, dealing with, uh, the pivot of, uh, different, uh, research topics and how to, uh, uh, let the data speak itself and present the data according to the evidence we collect. [00:36:00] And, uh, I also want to share in terms of, uh, dealing with healthy, uh. Disagreement. Luckily, uh, I, when I was at NCI, I took the team science, uh, training, uh, for principal investigators.
ZHEN: So it gives us a common set of, uh, language to conscious, recognize different stage, uh, for example, in a team environment. First, you are going through the forming stage. Then you'll go into the, uh, transforming and then storming when there's a disagreement. So we have, uh, a, a set of, uh, language we can recognize.
ZHEN: Okay. Right now the team is informing stage. And then we are going into, uh, so-called, um, uh, transforming or um, [00:37:00] storming. Then, uh, also, uh, uh, norming, meaning normalized at the end, we, uh, become a real team. So the team science training I took at NIH actually helped me recognize the team dynamics and resolve a lot of debates and disagreement along this.
ZHEN: White paper Apple. Wow. 
Yohanna: I wanna take that class. I wanna take that training. That's so smart. That's the smartest thing I've heard all day. 
ZHEN: Yes. Yeah, 
Yohanna: yeah. 'cause it's like common for everyone to understand. Yeah. 
ZHEN: Yeah. The team science field guy, uh, is still on NIH website and, um, I think the sequences from forming to, uh, storming and then norming and transforming.
ZHEN: So, uh, that benefit, uh, me and my career for a long time. The original author is, uh, [00:38:00] Dr. Michelle Benon. At the time she was, uh, the associate Director for strategic planning at NCI. 
Yohanna: Oh, 
ZHEN: okay. That's 
Yohanna: good. Now I know. This is great. Great conversation. Uh, looking ahead, what are some of, what's the, what are the next steps for, for this now that the paper is, and it's gonna be published soon?
Yohanna: Um, how do you hope this paper will influence policy and, and practice or, or maybe just public awareness going forward, like this POD podcast? 
LEW: So I, the question is, how will it influence policy practice, public awareness? Yeah, so I, well, maybe let's start with the last, the last element, right? Public awareness.
LEW: This is a good example. This podcast, the white paper, uh, the presentation decks that have been developed. Those are all great communication mechanisms to share what we've learned and make that information as broadly as, uh, accessible as we can. So I think that in, in of itself will be, [00:39:00] will, will really be, um, useful from a practical perspective.
LEW: Um. And I think there's a couple of things that are really useful and, and let me give maybe the most practical, um, example of what's useful. You want. Let, let's say you're a researcher in academia. You've received a grant from NIA. You could also be an intramural researcher at NIA and you're developing a research study.
LEW: You're putting the research protocol together and you know, you want to collect certain types of data that require digital health technologies and devices. Well, the question is where do you go to find out which devices are useful and why? And has anybody developed a framework to evaluate those technologies?
LEW: So right off the bat, as a researcher developing a study using digital health technologies, you've essentially got a prime here, right? This, this document serves as a primer and as a starting point for anybody who wants to do a research study, they can [00:40:00] look at the evaluation framework and. They can look at the compendium of devices that were collected in these five different areas, and then most importantly, there's some use cases that they can walk through to see how you could implement those technologies.
LEW: So I think anybody who wants to start a research. Study using digital health technologies. They got a primer. They've, they've got a book to guide them in the research they wanna do. It won't be the be all, end all, 'cause they still have to develop the research protocol. But what a huge start this is, rather than having to go out and do all the literature review on your own, trying to come up with a framework to evaluate the technologies.
LEW: You've got something here that's living and breathing and you can use them. From a practical perspective, one of the really cool things I hope will evolve out of this is not only will people use it, but they'll say B, you know, the app Diac group came up with a great framework and we think there are two additional criteria that should be used in this framework, and here's how it can be used if it became.[00:41:00] 
LEW: In some sense, a living, breathing document that could be expanded in the future or think about additional devices as those devices are, are being proliferated and they're being used. Wouldn't it be great if people fed back into this research, into this project? Their use of those devices, how they use them, um, challenges they found with them, results of their studies.
LEW: It really could become a living, uh, breathing activity, which would be really cool. From a policy perspective, this document, I think, would serve regulators really well, so that at, uh, organizations like the FDA, I think this, this document would really help them get in landscape, what's out there and how those devices can or cannot be used.
LEW: So I think it can serve all three of those spaces really well. This is fascinating. 
Yohanna: I love this. Um, all right, so there's one thing I, I would like to know going forward. Uh. I'm, I'm not a researcher. I don't, I don't understand any of these things. [00:42:00] Like, I'm listening to this and I'm, I'm understanding it as I, as I go along, I'm, I'm interested in something that, maybe this is, this question is for, uh, Zen.
Yohanna: Is there something that you wish citizens understood about health data and wearable tech and, and or remote trials? Is there something that like I should understand as just a taxpayer? Mm-hmm. You know, 
ZHEN: so, uh. I will share one, uh, common thing among the three topics you mentioned the question, so you mentioned health data, where about technology and remote clinical trials?
ZHEN: What's in common is, uh, the health data sharing and security and at, uh, behind the scene, uh, all we are focusing on as researchers, policymaker, regulatory. A fair personnel is the healthcare sharing and security. So, uh, [00:43:00] for the average citizen, uh, of course, health data and wearable technology will help. Uh, you get a incredible personal view, view data of your personal lifestyle, genetics, disease risk, uh, but you need to balance between sharing and security.
ZHEN: Sometimes the device, uh, platform providers, they are collecting your data and sharing. So you need to redefine print. And sometimes they are not 100% compliant. Uh, that's why we actually do the research. So the more as average citizen, you can share your personal concern, uh, and also both good and bad. In terms of transparency of the technology companies, we welcome your, uh, [00:44:00] input.
ZHEN: So, uh, and, and for the remote clinical trial participants, uh, we really appreciate your willingness to share, uh, your data. It's for the common good. You are joining effort with others to, uh, better understand your own condition. Help drive new drug development and new ways of, uh, treatment prevention.
Yohanna: You're saying read the fine print, make sure you protect yourself. Yeah, I agree. Uh, Ben, I want, I wanna give you a, uh, futuristic question. What is something that you wanna see outside of the lab? Maybe something that, that you feel, um, is going to impact. People's day-to-day lives, what's something new that's maybe on the horizon that you can kind of, uh, speak to?
BEN: Yeah. Um, one, uh, digital health innovation, uh, I'm genuinely excited to see [00:45:00] outside the lab is, uh, the continuous, non-invasive glucose monitoring, uh, using wearable devices right, without the needles or skin punctures, right. As all of you know, right. That today's continu mo, uh, glucose monitor are great, but invasive.
BEN: Expensive and not ideal to, uh, everyone. Right? Um, so people like Apple, Samsung, and some startups have been working on optical, uh, sensors. Uh, all the radio frequency technologies that can measure the glucose levels through the scan. Uh, some embedded in the, the, the, the smartphones. Um, so I'm so looking forward, uh, to the rollout of these technologies.
BEN: People. I 
Yohanna: mean, we've come so far, like we're talking about pricking our fingers, right? You're talking about that kind of technology where we would prick our fingers and do a little monitor. Now there folks can stick it on their arm, right? Yep. Oh, so in the future you think. It's [00:46:00] just gonna keep it evolving like nanotechnology, like small, little tiny robots in our body.
BEN: Yeah. It's a, it is a, with nowadays AI coming in place, you know, you can't imagine what are gonna change. Right. But it's, I know things will change and to the right way, hopefully. And, uh, and, uh, and, uh, people's life will be better. So, looking forward to that. 
Yohanna: Good. Yeah. That's good. All right. We're to the end.
Yohanna: We're at the end of our podcast. Are there any things that we should. Talk about maybe touch on that you feel we can expand on. You know, 
LEW: one thing Johanna, that came up in the questions, uh, when I was reflecting on the questions that you sent, was, um, from a practical perspective, how can research studies integrate these devices into the study?
LEW: And it's not a cheap endeavor to engage in. Uh, these are, some of these devices are expensive. The infrastructure around [00:47:00] them is expensive. Disseminating them can be costly. Getting the devices returned and cleaned so that they can be reused is not easy. And, uh, developing some kind of, well, warehouse is not the right word, but I can't think of the right word, but a warehouse, you know, for, uh, making devices.
LEW: Like this accessible and reusable for research purposes would really be great. If you think of the big manufacturers like Fitbit and Apple and Google and Android devices, et cetera, it'd be really cool if they were, um, willing to donate devices for research that could be reused, um, among many different research studies.
LEW: 'cause all the research studies have the same problem. It's, it's getting grant money, money is tightening up right now. And, uh, finding a way to, to share and reuse these devices, uh, [00:48:00] would be really useful. And I think that's one of the things I'd like to see moving forward. A, a way to bring down the cost, make them more usable across many different studies, and ensure that they're being done in a manner that's both ethically responsible, uh, for the participants in the study.
LEW: Can provide the greatest amount of use and the greatest amount of data across a variety of studies would be really cool. So we need a, uh, we need a, we, we need, we need something to collect these devices and make them usable across all these studies. Yeah. 
Yohanna: Okay, great. And with that, we are done. Thank you so much for your time.
Yohanna: I've learned so much. That's a wrap. Cut. Right.
Yohanna: Thank you for joining us on this episode of The Buzz. I hope you found our discussion on this new white paper from ACT iac. As interesting as we did, stay tuned for more conversations and insights in future episodes. Until next time, [00:49:00] stay curious and connected.