{"id":536,"date":"2015-05-07T15:23:46","date_gmt":"2015-05-07T19:23:46","guid":{"rendered":"http:\/\/www.chiplynch.com\/wordpress\/?p=536"},"modified":"2015-05-08T08:37:02","modified_gmt":"2015-05-08T12:37:02","slug":"when-the-quantified-self-meets-medical-reality","status":"publish","type":"post","link":"https:\/\/www.chiplynch.com\/wordpress\/?p=536","title":{"rendered":"When the “Quantified Self” meets Medical Reality"},"content":{"rendered":"

So, there was a bit of a twitter row a few weeks ago when Mark Cuban and a number of healthcare people got in a debate about the frequency of lab testing. \u00c2\u00a0Mark posted a tweet that started, according to Forbes: “A digital firestorm<\/a>“. \u00c2\u00a0I think the original tweets were deleted, but the Forbes article\u00c2\u00a0says they were:<\/p>\n

1)If you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health<\/p>\n

\u00e2\u20ac\u201d Mark Cuban (@mcuban) April 1, 2015<\/a><\/p><\/blockquote>\n

2) create your own personal health profile and history.It will help you and create a base of knowledge for your children,their children, etc<\/p>\n

\u00e2\u20ac\u201d Mark Cuban (@mcuban) April 1, 2015<\/a><\/p><\/blockquote>\n

3) a big failing of medicine = we wait till we are sick to have our blood tested and compare the results to \u00e2\u20ac\u0153comparable demographics\u00e2\u20ac\u009d<\/p><\/blockquote>\n

I first heard about this from\u00c2\u00a0Aaron Carroll (@aaronecarroll)<\/a>\u00c2\u00a0on\u00c2\u00a0The Incidental Economist<\/a>\u00c2\u00a0(TIE) blog. \u00c2\u00a0I’m a regular follower of the blog, and I have a lot of respect for Aaron; his writing is well researched and delivered; he writes for a few sites and it’s all great — here’s his most recent piece on wasting research on settled science<\/a>, which is spot on, as most of his writing is. \u00c2\u00a0Anyway, the blog (TIE) hits that sweet spot where I agree almost always, but occasionally see a different perspective. \u00c2\u00a0The primary reason for this is that what I do (all things Data) is central to medical research (Dr. Carroll’s main blog focus), but also completely removed from it since I don’t typically use research-level medical data.<\/p>\n

I’d pretty much resolved to stay out of this discussion (beyond what I did on twitter), but Aaron posted\u00c2\u00a0a video on the topic<\/a>\u00c2\u00a0yesterday, refreshing it in my mind, and this particular topic crosses several personal sweet spots, so I thought I’d chime in. \u00c2\u00a0I think my blog has like 5 readers, so it shouldn’t matter much anyway.<\/p>\n

<\/p>\n

It’s an interesting discussion to me because I’m in the position of agreeing with both sides (although I have less\u00c2\u00a0exposure to Mark Cuban than I do to TIE), and just believing that they’re misunderstanding one another’s perspective. \u00c2\u00a0Let me break down what I see as the disconnect.<\/p>\n

First, there is a growing assortment of people who are big into the “Quantified Self” thing. \u00c2\u00a0These are people who measure everything, all the time. \u00c2\u00a0Caloric intake, steps walked, heart rate, and much more. \u00c2\u00a0Technology has made this data collection possible only a handful of years since the best we could hope for was standing on a scale every morning and keeping a handwritten paper log. \u00c2\u00a0Reasonably affordable GPS watches can help you with stride length, and 24\/7 heart rate monitors can be worn comfortably on your wrist.<\/p>\n

I take Mark Cuban’s tweets as an extension of this. \u00c2\u00a0My view\u00c2\u00a0is that I just want the data, so that I can analyze it myself, and learn from it, in the same way I do about exercise and calories. \u00c2\u00a0From this growing movement’s online profile,\u00c2\u00a0I’m pretty sure I’m not alone in this interpretation.<\/p>\n

The healthcare opposition is straightforward: \u00c2\u00a0more testing leads to a litany of problems, starting with false positives. \u00c2\u00a0Aaron Carroll is leading the charge for this side. \u00c2\u00a0Research and background is strong here, and he’s absolutely correct<\/em>. \u00c2\u00a0Breast Cancer is a common discussion point: \u00c2\u00a0breastscreeningfacts.org has\u00c2\u00a0this dizzying infographic<\/a>, while Vox recently published similar results as a reply to Taylor Swift<\/a> coming out for more cancer screening. \u00c2\u00a0The former chart is here:<\/p>\n

\"Results<\/a><\/p>\n

And these guys are right. \u00c2\u00a0There’s every indication that over-screening is wasting healthcare dollars, subjecting patients to unnecessary and possibly harmful additional tests, and barely (if at all) doing any good for actual outcomes.<\/p>\n

HOWEVER, I still don’t see these as polar opposite arguments. \u00c2\u00a0Taylor Swift, coming out specifically for breast cancer screening is what these charts oppose. \u00c2\u00a0Taking lots of additional personal measurements of easy-to-gather metrics, such as Glucose, Cholesterol, White Blood Cell, or whatever,\u00c2\u00a0is not the same as “screening”<\/em>. \u00c2\u00a0Mark Cuban posted this tweet on the topic:<\/p>\n

“there is a HUGE difference between data collection and diagnosis. No reason to go to doctor to get blood work” (tweet to\u00c2\u00a0@charlesornstein<\/a>\u00c2\u00a0from @<\/span>mcuban<\/span><\/a>)<\/p><\/blockquote>\n

And I agree. \u00c2\u00a0I think we’re talking about two different things, here’s a flowchart (I advocate flow charts for these sorts of discussions):<\/p>\n

\"Diagnosis<\/p>\n

At the top is what I’m talking about. \u00c2\u00a0Get lab results. \u00c2\u00a0Get them regularly. \u00c2\u00a0Write them down. \u00c2\u00a0Can you afford quarterly? \u00c2\u00a0Great! \u00c2\u00a0Can you afford daily?! Even better! \u00c2\u00a0I predict that prices will drop and personal data tracking\u00c2\u00a0will become more readily available in many more quantifiable areas. \u00c2\u00a0That’s great; that’s what we’re going for. \u00c2\u00a0But the “we” here is the personal analytics folks. \u00c2\u00a0I can be accused of being a data hoarder sometimes, and that’s not unreasonable, but that’s a result of being in a world where data mining and “big data”* are really driving a lot of new insight.<\/p>\n

The problem, and the medical folks are quick to point this out, is that it’s human nature to interpret results. \u00c2\u00a0They argue that the bottom scenario is inescapable — where an irregular measurement from some lab result must\u00c2\u00a0<\/em>be followed up, quickly<\/em>, with further testing. \u00c2\u00a0They seem to be arguing that this is due to a combination of factors, many human, many procedural within medicine. \u00c2\u00a0That is, first, anyone looking at their own data and finding an anomaly will naturally want more information, and so seek out additional tests. \u00c2\u00a0They’ll likely get to a doctor who, ethically enjoined to treat a patient that comes to them with a concern and an abnormal test (even a mild one), will provide more tests.<\/p>\n

I’m recommending a middle ground:<\/strong> <\/em>\u00c2\u00a0don’t recommend frequent blood tests for everyone, but understand, cooperate, and do not be dismissive with the perspective of people who prefer, and can afford, and can behave rationally, with the additional data.<\/p>\n

I think there are plenty of people who can learn from far more frequent measurements, and who will actually get MORE peace of mind out of it rather than less. \u00c2\u00a0I think I’m one of those people. \u00c2\u00a0I like knowing my cholesterol and glucose numbers; I had to have a conversation with my doctor the first time I did blood tests, years ago, to understand the results, but there wasn’t much to it. \u00c2\u00a0Some were normal, some were great, some were borderline. \u00c2\u00a0Having a chart of those over time, and frequently, would be a huge addition to my personal understanding of how my body works. \u00c2\u00a0I promise not to freak out if some number spikes on one day and then goes normal again — rather than freak out, I’d assume it was a measurement error, or more likely have learned something about how much cheating on a glucose fast really matters when Krispy Kremes are involved.<\/p>\n

But individualized medicine isn’t prepared for this. \u00c2\u00a0Most people aren’t data driven, and aren’t able to be objective about this sort of thing with their health. \u00c2\u00a0If you’re one of\u00c2\u00a0those people, yes, keep going to the doctor the way you usually do.<\/p>\n

[Note: \u00c2\u00a0this is where I really start to ramble]<\/strong><\/em><\/p>\n

Let’s look at Aaron’s recent video. \u00c2\u00a0You should go watch it<\/a>. \u00c2\u00a0I’ll be here. \u00c2\u00a0He gives good examples of this happening.<\/p>\n

Welcome back.<\/p>\n

Aaron nicely laid out some points,\u00c2\u00a0and has a lot of good quotes, so let’s look at them:<\/p>\n

1. “Too many people think that tests are binary things. \u00c2\u00a0They’re not.”<\/strong><\/em><\/p>\n

Absolutely! \u00c2\u00a0But so what? \u00c2\u00a0In fact, this is MORE reason to test more, and learn the intricacies of the data. \u00c2\u00a0He says “if someone got this value with no other data I’d have no idea what to do with it. \u00c2\u00a0You have to interpret it in context.” \u00c2\u00a0But a repeated baseline\u00c2\u00a0is context<\/em>. \u00c2\u00a0The very point is to build context. \u00c2\u00a0I am not\u00c2\u00a0recommending\u00c2\u00a0interpreting<\/em> the data at all at an individual test level. \u00c2\u00a0The more data you have, the more context you have when you need it<\/em>. \u00c2\u00a0Outlier detection<\/a>, which is what medical tests boil down to,\u00c2\u00a0is a big deal in data mining, and it’s difficult to do with few data points.<\/p>\n

2. “When lab tests pick up something that isn’t real, it’s a false positive”<\/strong><\/em><\/p>\n

Two things from point one matter here. \u00c2\u00a0First, we agreed that tests aren’t binary. \u00c2\u00a0“Positive” and “Negative” are binary, so healthcare is the one treating non-binary data in a binary way. \u00c2\u00a0That’s the\u00c2\u00a0opposite<\/em>\u00c2\u00a0of what I’d recommend, so while it sounds like we agree, the problem isn’t with extra testing, it’s with over-interpretation.<\/p>\n

TO REITERATE HOWEVER:<\/span> Are you going to freak out every time a test\u00c2\u00a0goes slightly above borderline? \u00c2\u00a0THEN THIS ISN’T FOR YOU.<\/em><\/p>\n

Dr. Carroll talks about specificity and reliability of tests — he’s absolutely right about all of this information, but again his context is about\u00c2\u00a0diagnosing<\/em>, not just data collection. \u00c2\u00a0Different points of view entirely.<\/p>\n

3. “What do you do with the abnormal value?”<\/strong><\/em><\/p>\n

Store it. \u00c2\u00a0Save it for later. \u00c2\u00a0Same with normal values. \u00c2\u00a0We\u00c2\u00a0expect<\/em> that test results from otherwise uninteresting days\u00c2\u00a0are<\/em> normal. \u00c2\u00a0Store a few of them up, then consider them all, together, when you visit your doctor. \u00c2\u00a0See, one problem is that doctors don’t get to see their patients very frequently (and there’s not enough doctor time or money to go around to change\u00c2\u00a0this even if we wanted to). \u00c2\u00a0The entire system of blood and other testing is based around the premise that\u00c2\u00a0if<\/em> something is wrong, you’ve got a small window to catch it — like an annual physical that most people only take every couple of years. \u00c2\u00a0Doctors are geared up for that kind of thinking, and it’s a more delicate balance if that’s your reality.<\/p>\n

If you start from the assumption that you’ll have one blood test per year then you have no choice but to get worried if your number is out of some boundaries set with a very wide cohort. \u00c2\u00a0We have to compare test results for YOU against all the other people in your age and race and gender brackets, which is millions of people, because that’s all we have.<\/p>\n

Charles Ornstein, who got involved online,\u00c2\u00a0takes this on<\/a>\u00c2\u00a0a bit.<\/p>\n

I think there\u00e2\u20ac\u2122s a misunderstanding that diagnosis is some super clear black-white kind of distinction, when in fact there are 1,000 shades of gray in between. The time you get into that gray is when you\u00e2\u20ac\u2122re dealing with people who feel fine and have some detectable abnormality. That\u00e2\u20ac\u2122s how we get into it in cancer screening. We\u00e2\u20ac\u2122re looking for very early signs of disease. There\u00e2\u20ac\u2122s going to be great pressure to react to those abnormalities.<\/p><\/blockquote>\n

Where is the problem there? \u00c2\u00a0I see several logical issues. \u00c2\u00a0First, and again, we say something isn’t black and white, but that there’s a “detectable abnormality”. \u00c2\u00a0No, that’s wrong. \u00c2\u00a0There’s a statistical deviation. \u00c2\u00a0In some cases it’s very large, in some cases very small. \u00c2\u00a0Again, I don’t see how more data wouldn’t help clarify. \u00c2\u00a0Cancer detection is tough, and one technique used is to wait and retest. \u00c2\u00a0If you get your first PSA test (a prostate cancer indicator) at age 50, and it’s borderline, what are we comparing it against? \u00c2\u00a0What if you had monthly tests for 10 years personalized to you<\/em>\u00c2\u00a0but didn’t look at them until 50? \u00c2\u00a0There is\u00c2\u00a0NO WAY<\/em> that would not be more informative. \u00c2\u00a0Look at this completely fictional chart:<\/p>\n

\"White<\/a>

Would you treat these patients differently, if you only saw them at the one Doctor’s Visit?<\/p><\/div>\n

If four patients came to a doctor with a WBC (White Blood Cell test) reading of 10.5, and the same (if any) symptoms, they’d be treated the same. \u00c2\u00a0But what if each of those four patients brought different histories with the same test? \u00c2\u00a0How can this not be more informative? \u00c2\u00a0The fact that doctors may not know how to use the information, because the research hasn’t been done, doesn’t mean it is not informative to the open discussion between patient and doctor. \u00c2\u00a0If I were Patient 1, with a level reading every quarter, I’d probably feel comfortable not having additional tests. \u00c2\u00a0Patient 3, with a recent spike, would almost certainly what some treatment. \u00c2\u00a0Patient 2, with the constantly increasing results would probably ask more penetrating questions, and Patient 4 is probably someone the doctor should ask more history questions of (i.e. did you feel\u00c2\u00a0feverish when you took the last blood test?). \u00c2\u00a0In each case I’m not saying that the chances of over or under diagnosing are necessarily better, but the\u00c2\u00a0discussion<\/em> could be so much richer at the\u00c2\u00a0one\u00c2\u00a0<\/em>doctor’s visit with a history.<\/p>\n

I asked something similar\u00c2\u00a0of Dr. Carroll directly (he was kind enough to have a bit of twitter banter with me during these conversations). \u00c2\u00a0In his blog posts he says that if you have a WBC just out of range, what does that mean? \u00c2\u00a0Without context — secondary symptoms — it may mean nothing, or it may still be the result of something, we don’t know, and that’s the problem (remember, tests aren’t yes\/no binary answers). \u00c2\u00a0OK, so I asked, wouldn’t it be MORE helpful to know that a person had one value that was significantly different than that person’s individual baseline? \u00c2\u00a0A 10.5 when the person had 5s for months?<\/p>\n

He answered that, no, and he talked to other doctors and they wouldn’t treat that information any differently.<\/p>\n

I was surprised. \u00c2\u00a0But when I thought about it, that surprise went away, and this is why:<\/p>\n

_I_ AM\u00c2\u00a0a data scientist. \u00c2\u00a0Most doctors are NOT. \u00c2\u00a0They have to deal with individual patients<\/em> with techniques they’ve developed over years (centuries as a profession) garnered from\u00c2\u00a0other patients<\/em>.<\/p>\n

I could go on dissecting other people’s quotes on this topic for ages. \u00c2\u00a0It always boils down to one thing: \u00c2\u00a0Doctors have to deal with treating individual patients, and their experience — correctly — makes them interpret a request for more tests as a request for more action, diagnosis, and screening, while a new breed of quantified-self patient is emerging, some of whom really want the data for their own sake.<\/p>\n

Most doctors in this argument at some point say that they believe in working with a patient to find the correct course of treatment (or non-treatment) for them. \u00c2\u00a0I say we embrace this, but admit that some patients\u00c2\u00a0would<\/em>\u00c2\u00a0fall into a category of frequent data collection.<\/p>\n","protected":false},"excerpt":{"rendered":"

So, there was a bit of a twitter row a few weeks ago when Mark Cuban and a number of healthcare people got in a debate about the frequency of lab testing. \u00c2\u00a0Mark posted a tweet that started,… Read More<\/a><\/p>\n","protected":false},"author":2,"featured_media":553,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[29,24,30],"tags":[],"class_list":["post-536","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-data","category-happytechnologist","category-healthcare"],"_links":{"self":[{"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/536","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=536"}],"version-history":[{"count":14,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/536\/revisions"}],"predecessor-version":[{"id":557,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/536\/revisions\/557"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=\/wp\/v2\/media\/553"}],"wp:attachment":[{"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=536"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=536"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.chiplynch.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=536"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}