The rise of the American space program overlapped with the dawn of the civil rights movement in the United States. Many of NASA's first African-American employees worked to send humans into space while at the same time finding their place in the struggle for racial equality. Kojo explores this intersection in history with two authors who chronicled the stories of some of the earliest African-American space workers - and an astronaut who followed them to become the first African-American in to lead NASA on a permanent basis.
Some people strap on high-tech wristbands to measure their movement, weight and sleep. Others go low-tech, using pen and paper to record their blood pressure, glucose level or the pills they take. In either case, self-trackers who want to harness that data to improve their health often have trouble sharing it with doctors because of issues including formatting, precision and time. Broadcasting live from the Health Data Consortium’s Health Datapalooza, Kojo explores the benefits and challenges of self-tracking as a tool for improving medical care.
- Kavita Patel Managing Director for Clinical Transformation and Delivery at the Brookings Institution’s Engelberg Center for Health Care Reform; primary care physician at Johns Hopkins Medicine
- Adriana Lukas Founder of the London Quantified Self meet-up
- Susannah Fox Associate Director, Pew Internet & American Life Project, Pew Research Center.
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MR. KOJO NNAMDIWelcome back. We're coming to you live from the Health Datapalooza Conference which is taking place at the Marriott Wardman Park Hotel in Washington. A deluge of big data from the federal government is prompting closer scrutiny of hospitals, doctors and payment systems all in the name of improvement patient care. But small data can be just as important to an individual as medical treatment. As the government tracks broad patterns and prices, patients are starting to track their own symptoms, medications and fitness routines in an effort to better manage their health.
MR. KOJO NNAMDISome people strap on a high-tech wristband that measures their movement, weight and sleep. Others go low-tech using pen and paper to record their blood pressure or glucose level or the pills they take. But all self-trackers face the same hurdle, creating a set of uniform reliable data and putting it into a format their doctor can use.
MR. KOJO NNAMDIJoining me to look at the challenges and benefit of self-tracking to improve health care outcomes is Adriana Lukas, founder of the London Quantified Self meet-up. Adriana, thank you for joining us.
MS. ADRIANA LUKASThank you. My pleasure.
NNAMDIAlso with us is Kavita Patel, managing director for clinical transformation and delivery at the Brookings Institution's Engelberg Center for Health Care Reform. She's also a primary care physician at Johns Hopkins Medicine. Kavita Patel, thank you for joining us.
DR. KAVITA PATELThank you for having me.
NNAMDIAnd Susannah Fox is associate director at the Pew Research Center's Internet and American Life Project. Susannah, welcome.
MS. SUSANNAH FOXGlad to be here.
NNAMDIYou too can join the conversation. Give us a call, 800-433-8850 or send email to email@example.com. Susannah, when we talk about self-tracking we often picture fitness fanatics wearing wristbands that measure their mileage. But a Pew study found that 70 percent of adults keep track of at least one health indicator, and many use paper and pencil to do so. Who is self-tracking and why?
FOXIt turns out to be a pretty huge underground movement because we kept the survey question very open. We let people define tracking for themselves. And once you drill down...
FOX...into their heads. Now some people might say, well, that's not really tracking, but it really could be. You know, if it's important to them, if it's helping them to solve some mystery in their life, then that counts as data I think.
NNAMDII know exactly how many hours and minutes I've been on my bicycle per week in my head because every ride I take I calculate it and I add it up. So a lot of people are doing that in their heads. Adriana, the quantified self movement that you're involved with is highly individualized driven by people with questions about their own body or health. Where does quantified self intersect with the notion of self tracking to improve medical outcomes?
LUKASWell, self-tracking is a method that you use to quantify yourself if you wish. I think quantified self is a big of misnomer on both counts. You cannot quantify a human being -- well, I'm sure there are people, you know, who would disagree but, you know, philosophically speaking it's not desirable either. And the self, there is no self to be -- I mean, not -- even the base that we are quantifying, we're quantifying using Fitbit and different devices. So it's a fragmented self in terms of quantification.
LUKASHowever for the purpose of...
NNAMDI...in spite of...
LUKAS...in spite of -- for the purposes of the conversation about quantified self it's a useful phrase that basically means that there is a movement of people who meet socially as well as a sort of association of people. It doesn't mean that if you use Fitbit and don't know about quantified self, you're not quantified yourself or vice versa.
LUKASThe thing about quantified self is the self-tracking -- sorry -- is self awareness. It's not just about the data. It's about holding a mirror to yourself and to your activities for all sorts of purposes.
NNAMDIAnd what we're really talking about here is a burgeoning movement.
LUKASIt's pretty big. It's past that stage I think. And in different countries -- in the UK it's certainly no mainstream. But from what I understand the U.S. is pretty aware in the mainstream media. It's been covered hugely. So it's growing, yes. It's still growing.
NNAMDIKavita Patel, some areas of medicine like diabetes care already rely on patients tracking their own conditions. Where is self-tracking used now and how could doctors incorporate it in new ways to improve health care?
PATELSo self-tracking is one of the oldest forms in medicine starting with the days of not just measuring your own glucose, but I tell all my patients with high blood pressure to try to monitor their own blood pressure. And they all come back with little scripts of paper and with their little blood pressure readings and the time.
PATELSo it's -- self-tracking and quantifying your health care data is something that we've been doing for a long time with pen and paper. But I think this movement into bringing and integrating our information kind of is hitting into the big data title wave. And we're seeing new ways of thinking about data that quite honestly the health care industry doesn't even have an understanding of what the possibilities are. And it's really people like Adriana who are showing us what we can do.
PATELBut doctors are welcoming this opportunity, but there are just some logistical hurdles. And technical...
NNAMDII was about to ask, what are the limitations of self-tracking for physicians? Are the data reliable? Would you base a diagnoses or treatment on data the patient brings you?
PATELI do. I do. And in our practice -- I work for Johns Hopkins and we take pride in taking into consideration all the patient's data. A real common one is pain. The most subjective experience in life and the most troubling thing as patients is to be in pain. So when patients tell me -- I only have 15 minutes with them so I need to know what they're doing at home. And patients bring that in. But what's troubling, Kojo, is that I work in a very advanced electronic health record. And that data that patients come with, whether it's on a computer device or pen and paper, is really hard to integrate into some of these electronic health records right now.
NNAMDIWe have a question from a member of the audience. Go ahead, please.
MARIAHi, I'm Maria, from North Bethesda. Thank you for coming today.
MARIASo I had a question about -- I really feel like the world of mobile devices and applications are very noisy, especially around the self-tracking topic. And I wanted to know, is there any resource for patients to know which applications, which devices are more efficacious in clinical outcomes, but also, you know, if they have better indications for certain populations, you know, just -- and the output of that data, how useful is it to the patient versus the provider?
PATELSo one of the resources that we rely on is to try to understand which of the devices or which of the apps, in this case, have also been looked at by professional groups and societies and have incorporated what I would call evidenced-based medicine. So diabetes, blood pressure, there's some amazing applications from the American Heart Association, the American Diabetes Association. And I think that your question is something all doctors ask, as well, just so you know.
PATELSo more and more doctors are trying to explore -- myself included -- what these apps and wearable devices can tell us. And to Kojo's point about reliability, we're also trying to make sure that we're not treating it in a vacuum. It's not just the data you bring, but it's also the clinical context and the time that we get to spend together. But I would definitely recommend some of the ones that have been looked at and reviewed and certainly my colleagues may have some other suggestions.
NNAMDII was about to say, Susannah, you're involved in an effort to standardize health data so it can be shared more easily between patients and doctors.
FOXYeah, so what we are facing at this point is not only a sort of kitchen-table homemade tracking data stream, which is coming in from the home, but we're also dealing with multiple standards -- just in the United States, much less internationally -- where nobody has yet really codified how to bring all the data together. And we have competing electronic medical record platforms that are not interoperable.
FOXSo they're not sharing data. And so the question before us is now that we know that data's going to play a big role in our lives, how are we going to create standards, so that going forward we don't make the mistakes that we've made in the past. It's kind of like the railroad system, that, you know, there used to be different sizes of tracks, depending on which company controlled that section of the railroad. And that's how healthcare is today. We need to have a unified track system.
NNAMDIAdriana, people who buy tech devices for self-tracking are limited by what the devices measure and how they present the data. You'd like to see a future in which users, rather than companies, customize the devices and that algorithms to meet their own needs and maybe even use them in ways we have not yet imagined. How do you see that scenario evolving and how would you see it improving healthcare?
LUKASI think before it improves healthcare it has to improve my individual state of body and mind. I think that's the sort of primary source to quantify itself, not a mandate, but, you know. Because it can do that. It can do that easily, then trying to incorporate things into the system, which we know has its own obstacles. There is plenty of problems just trying to use the devices and collect data on your own.
LUKASData formats -- what I would like to see is separation of data collection. So the sensor makers focus just on making the best sensors possible. They don't try to be everything like Fitbit is trying to be. You know, then they try to both be the collecting devices -- they try to store your data with all the necessary issues around formats and privacy and standards. And then they try to do analysis.
LUKASAnd they do all three pretty badly. And all -- they do that substandardly or not adequately, whichever way you decide to describe it. I think it will be better to have three separate fronts, where 1,000 flowers bloom in each. So people who have expertise about how to mine and analyze data can provide that for me. I can have my data under my own control or somebody I trust. And I can buy sensors I want to get, depending on what they do and how -- what quality -- and how involved. So I don't want to be locked in any kind of platform that tries to do everything.
NNAMDII have another question from a member of our audience.
NANCYHi, I'm Nancy, from Hennepin County Medical Center, which is a safety-net crisis in Minneapolis. And we care for vulnerable populations that often don't have stable housing or food. So my question is, will these populations be left behind, as technology allows patients to do more self-tracking and be more engaged in their care? Or are there ways that these technologies could help them?
PATELSo I'm glad you brought up that question because this is one of the biggest challenges, is how to make sure that no population gets left behind. But we already know that in our healthcare system we see glaring disparities in healthcare, regardless of even access to data. I do think that there are some really promising opportunities around social determinants of health that I've seen personally involved and integrated into safety-net settings.
PATELAnd because of some of the research that was done at Pew, we know that these are populations that have Smartphone technology, and, in fact, that can be the only way to give patients access to much needed resources, like housing, like food. There's a program in the Midwest for HIV positive teenagers. Where teenagers don't use email anymore. I don't know if you realize that, Kojo. Apparently email is so, you know…
NNAMDII don't know any teenagers.
PATELSo they're using -- they're actually using text-based technology because it's one of the only ways that they can get to some of the most vulnerable populations. So I think it's quite promising. But I think your question points out that we must never just assume that this is available for all and accessible by many. And we have to constantly look at how we can expand that broad access.
NNAMDIGot to take a short break. When we come back we'll be returning to this conversation on self-tracking for good health. But you can still join it by calling 800-433-8850. Or if you're in our auditorium, you can step up to the microphone. You can also send email to firstname.lastname@example.org. I'm Kojo Nnamdi.
NNAMDIWelcome back. We're coming to you live from the Marriott Wardman Park Hotel, which is having its fifth annual Health Datapalooza. Joining in studio to discuss self-tracking for good health is Adriana Lukas, founder of the London Quantified Self meet-up, Kavita Patel is managing director for Clinical Transformation and Delivery at the Brookings Institution's Engelberg Center for Health Care Reform, primary care physician, she is at Johns Hopkins Medicine, and Susannah Fox is associate director of the Pew Research Center's Internet and American Life Project.
NNAMDIWe got a tweet from Heather, who says, "The V.A. help has an excellent home Telehealth tracker monitoring blood pressure, weight, etcetera by automated phone calls. Nice program." One of the conundrums for self-trackers who use a commercial device, like a Fitbit or Jawbone -- we got a tweet from Vischwa saying, "I store my Fitbit data in Health Vault," is that the company ends up owning and controlling your data and presenting it in a proprietary format. What does that mean for individuals and for doctors ability to use that information? I'll start with you, Adriana.
LUKASWell, it has profound implications for how much you can get out of that data. So if you think of data analysis as ability to ask questions of your data, well, you know, if it's locked in a silo how are you going to do that? How are you going to ask the questions? And also, you could argue that, you know, Health Vault might provide you with some decent analysis, but, again, analysis is questions. Who is better qualified to ask questions about yourself than yourself?
LUKASAnd experts can help. They can help you phrase the questions, but you have to drive that analysis. And that's why forums and silos are a very important infrastructural point for self-tracking and quantified self…
FOXWell, I've been thinking about how so many of the questions that we ask about ourselves are really personal mysteries. And I was struck by when we asked trackers if they share the data, only about one third say they share the data with anyone else. If someone is living with a chronic condition, especially two or more condition, they're more likely to share the data and more likely to share it with their clinician. But that means there are a lot of people who are tracking some aspect of their health and they're keeping it to themselves.
FOXAnd I think about those sort of secret questions that we might type into Google, that we don't anybody else to know about or the mysteries that we each have and there's a sense that you want to acknowledge that aspect of health. And that aspect of solving those personal mysteries. And whether people are really aware that companies are owning the data is an open question.
PATELI think this is from the physician and provider perspective, this is the most distressing news because finally we have data, but then accessing the data is now bounded by kind of all these proprietary entanglements when we actually agree that the data should be yours, if it's your data.
PATELAnd it should also be accessible where you are, which is even more disturbing because of the issues of going to another clinic and not having the same access to that platform or that data. And it seems like it could set back the big data movement quite a bit if we continue to let that occur.
NNAMDIHere is Robert, in Alexandria, Va. Robert, you're on the air. Go ahead, please.
ROBERTHi. Thanks for having me on. And what a wonderful conversation. I wanted to chime in. I'm a father of a child with intractable epilepsy. And we, in 2007, launched a website to track the seizures and surrounding treatments and then just wanted to improve our clinical communication with our doctor. And we (unintelligible) in 2007 and it's grown immensely since we launched it, using it throughout -- used throughout the epilepsy community.
ROBERTBut I wanted to chime in and really say how important the patient perspective on the development of these tools. And what we found since we launched our tool is that many tools have been developed to do similar things, but focus more on research or developed by clinicians who aren't really understanding how these tools will be used by the patient.
NNAMDIThe importance of the patient perspective, Kavita.
PATELI think that the caller gets at the most important aspect, which is it really needs to be user design driven. And the user in this case is the patient. And then oftentimes their family, as the caller mentions. So I couldn't agree more. And I think that what we're seeing in the quantified self-movement is more and more development, kind of from a patient-centered approach. We use that term a lot in healthcare, patient-centered. I often question if we really mean it, but I think this movement is one of the foundations for it.
NNAMDIGlad you mentioned family, because Susannah, can you talk about some of the groups that could benefit from an increased focus on self-tracking, like family members who are caregivers or people with chronic disease. How would they benefit from greater self-tracking?
FOXWell, we did find -- we asked people in the survey if they're caring for a loved one, whether it's an adult or a child. And then if they're tracking any aspect of health on their behalf. And we found that one third of caregivers are tracking that data. Caregivers are more likely to use formal means. They're more likely to be writing it down or to be using some kind of spreadsheet. And this is evidence of what I see a lot in my fieldwork. And that is when someone is dealing with a serious health issue, they take it seriously.
FOXThey take this very, very seriously. And it's very often the parents of children with rare conditions or an acute or chronic condition that are the most likely to go to the ends of the Earth, you know, as the caller described, creating his own tool to track seizures. That's an incredible accomplishment. And what a service to his community. And that is playing out across so many rare diseases.
FOXAnd what's wonderful about the internet, is that we can now collapse time and space and share those tools. And whereas before, if he created something like that pre-internet, only he and his family and his close network would know. Now, the world knows.
NNAMDIIs there any value in donating your individual data to the collective? What could we learn from assembling self-tracking data? And is there any mechanism to do that, Adriana?
LUKASWell, the social mechanism of (word?) exists, which is not really a formal one, sufficiently for the -- for what you ask. But it's a starting point. Now, the problem with data, when you mentioned about data being compatible and so hard to integrate into healthcare system data, it may be better to focus on integration of meanings and of those result of that analysis.
LUKASSo you don't have to worry about consistent data. Now, that's a whole different proposition. And it's a question of helping people who are already trying to do something. They're highly motivate to solve their problem. Finding tools that help them do just that and focus on that, rather than trying to solve a bigger issue of mainstream user or all patients, and just take it from there.
NNAMDIApple announced yesterday that it's creating new health app in partnership with the Mayo Clinic. What will it do and what's the significance of Apple's entry into the world of health apps, Kavita?
PATELIt's integrating some of the information from some of the wearable devices, weight, activity information, blood pressure. And trying to kind of meaningfully merge that, if you will, with some of the clinical data that doctors from the Mayo Clinic and other providers can see. So it's the first, I think, of probably what are to be a tsunami wave of relationships between these wearable devices, the information they store and how we think about processing our healthcare data.
PATELBut, you know, and like many things in the beginning, it'll probably be a little clunky and may not have all of the whiz-bang that we think it should. But it's a good step.
NNAMDIWe're down to one minute and we have a question from a member of the audience. Can you make it brief?
AUDIENCE MEMBERYes. Just a quick question. There has been something that has helped us have a write-once, run-anywhere web, which is participation and peer review transparent processes through the World Wide Web consortium. I see -- and I'm concerned about the fact there's less and less participation in standard initiatives. And more and more power is put in the few hands of some developers, at big firms like Apple, Google, Amazon, etcetera. And much of our fate about our data, how it's handled, how it's stored, who gets it -- the NSA, for example.
NNAMDII guess that's going to have to be the last comment. Thank you so much. Adriana Lukas is founder of the London Quantified Self meet-up. Kavita Patel is managing director for Clinical Transformation and Delivery at the Brookings Institution's Engelberg Center for Health Care Reform and a primary care physician at Johns Hopkins Medicine. And Susannah Fox is associate director at the Pew Research Center's Internet & American Life Project.
NNAMDISpecial thanks to Sarah Zellner at the Health Data Consortium, Tina Hochberg at Courtesy Associates, and Greg Downing at the Department of Health of Human Services. And our WAMU 88.5 engineering team here at the Health Datapalooza, Jonathan Charry, Mikel Bellamino (sp?) and Bryan Patton. And thank you all for being here. And thank you all for listening. I'm Kojo Nnamdi.
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