Dean Pomerleau Posted June 26, 2015 Report Share Posted June 26, 2015 Hi all, Quite while back, on the old email-based CR list, Michael Rae asked about web-based tools for tracking one's health data, and particularly one's bloodwork. Given how unwieldy and ugly my current method is (just a big HTML table - see this post), I went looking for a better alternative, along the lines of what Michael was looking for. I came across the service called WellnessFX. It looks pretty cool, and I'm wondering if anyone else has used this service. Hear are some of its features: A free account allows you to put in your data from prior tests. The have all the standard (and many non-standard) tests to choose from. Unfortunately, the process appears to require entering one item at a time - very tedious, but doable. Once you've uploaded your data (or gotten a blood test via them - see below), you can see tables and graphs of your data over time, which is pretty cool. See image at the bottom of this post for an example. Paying members get blood testing services, ordered through LabCorp or Quest, without a doctor's referral. Like the service I use (Private MD Labs). Their "Performance Package" appears to include almost all of the tests that the "Male Ultimate Anti-Aging with Free Testosterone" test from Private MD Labs that I use, plus a few more. Its somewhat more expensive though - although there appears to be a $100 coupon code available on-line that brings the cost down to the same ballpark (~$400). You can also order a custom panel of tests that you choose a la carte, although the price isn't specified for the individual tests - you have to ask them explicitly for the cost of the custom tests you want. They also offer (for a fee) consultations with physicians, registered dietitians and nutritionists about your results. They got a very good review from the website "Cool Tools". Here is another positive review. They comply with the US HIPAA regulations. Here is their privacy policy. I can't say that I've read or understand it all. Has anyone looked into WellnessFX, and/or used their service? --Dean Here is an example of the WellnessFX data visualization tools: If the image doesn't show up, here is a link to it. Link to comment Share on other sites More sharing options...
Saul Posted June 27, 2015 Report Share Posted June 27, 2015 Hi Dean! I'm fortunate to have something better -- but proprietary. The University of Rochester (I am a Full Professor in the Mathematics Department) has a tool called "MyChart". It plots the results of your lab tests (bloodwork, urine, etc.) in a table, graph, or other format, enabling you to compare past results (for example, as a graph). The medical school of the UR is Strong Memorial Hospital. I believe that the other major hospital in Rochester -- Rochester General -- has a similar tool for its patients. (My wife is a Nurse Practioner at RGH, specialising in Gastroenterology). -- Saul Link to comment Share on other sites More sharing options...
Zeta Posted June 27, 2015 Report Share Posted June 27, 2015 Hi Dean, To answer your question, I haven't used or looked into WellnessFX, but I think the question of the best online health tracker is extremely important. An important criterion for me -- since one never knows when a better program will come along -- is the ability to export the data in a form that will make it work as easily as possible with other health trackers/personal medical data systems. A lot of people are thinking about this matter: http://www.ncbi.nlm.nih.gov/pubmed/?term=personal+health+records But I haven't yet found a good system/program. - Zeta. Link to comment Share on other sites More sharing options...
Guest Dean Pomerleau Posted June 27, 2015 Report Share Posted June 27, 2015 Hi Zeta, An important criterion for me -- since one never knows when a better program will come along -- is the ability to export the data in a form that will make it work as easily as possible with other health trackers/personal medical data systems. WellnessFX allows you to export your data in CSV or Excel (XLSX) spreadsheet format. You can also print a well-formatted version of all your data. It might be worth looking into for people who would like nice graphs and a way to collect and store health data on-line. --Dean Link to comment Share on other sites More sharing options...
Michael R Posted July 23, 2015 Report Share Posted July 23, 2015 Dean, and all: First, Dean, thank you very much for doing some legwork about testing services in general and this personal electronic health record system in particular! As you indicate, this is a subject in which I'm greatly interested and disappointed with the available scope of products I've seen. I've been meaning to follow up on this one you've found in detail since you (Dean) first posted it, and still haven't done so ... I've done some digging around and am not yet ready to sign on. But I thought I should alert everyone to one thing, about which I've just asked the company: I'm very concerned about their apparent lack of proper privacy protection for health information. In their privacy policy (which may be a bit of a misnomer), they say: We receive information related to a Member ("Member Information") when: You Provide Us Information, including when you register as a Member, schedule an appointment, or otherwise communicate with us through our Site. This information may include: Health Information (e.g. medical records, age, gender, health background, health status, prescribed and over-the-counter medications, Authorized [Medical] Provider notes and diagnoses, medical ID number, driver's license number, laboratory testing results, insurance information); Personal Information; Demographic Information (e.g., ethnicity, marital status, sexual behavior, sexual orientation); and Lifestyle Information (e.g., salary and level of education information). Your Authorized Providers and Testing Laboratories Provide Information to Us (upon proper authorization from you); [...] How We Use Your InformationMember Information. We will use your Member Information to: [...] Market our Service and those of third parties we believe may be of interest to you; Respond to your requests, resolve disputes and/or troubleshoot problems; Improve the quality of the Site and the Service; and Communicate with you about the Site and the Service. [...] How We Share Your InformationWe share your information with third parties when we believe the sharing is permitted by you, reasonably necessary to offer our services, or when legally required to do so. For example, we may disclose certain Member Information, Health Provider Information and Visitor Information: To third party vendors who help us provide the Service or the Site or who provide additional goods and services through the Site, including without limitation, testing laboratories, phlebotomists, billing providers and benefits administrators; To third parties to whom you ask us to send such information; To a parent company, any subsidiaries, joint ventures, or other companies under a common control (collectively, "Affiliates"), in the event we have such Affiliates in the future, in which case we will require our Affiliates to honor this Privacy Policy;[...] Limitations on Deletion of Information. You may request deletion of your Personal Information by us, but please note that we may be required (by law or otherwise) to keep this information and not delete it (or to keep this information for a certain time, in which case we will comply with your deletion request only after we have fulfilled such requirements). When we delete Personal Information, it will be deleted from the active database, but it may remain in our archives and we may also retain Anonymous Information about your use of our Service. Once we disclose some of your Personal Information to third parties, we cannot access that Personal Information any longer and cannot force the deletion or modification of any such information by the parties to whom we have made those disclosures. Information made available through the Service to Authorized Providers and testing laboratories is required to be used by such entities in accordance with all applicable laws, including the Health Insurance Portability and Accountability Act ("HIPAA"). [...] This seems to be saying that they will use my detailed medical and other personal information to market services to me — both their own products (which necessarily means that their marketing dep't has access to such info — there is no firewall) and those of third-party parners (which may or may not entail giving those parties such access); that they will share this info with any future affiliates, of whose existence and purposes I may know nothing; that they may still hold on to my medical and personal info even after I request them to (and they ostensibly agree to) delete said info from their system; and that they can do nothing to request removal os such info from the records of any third parties to which they have disclosed it! They note that the use of such info by people and organizations legally classified as medical providers (healthcare professionals and testing labs) are governed by HIPAA, but both the logic of what is laid out before and the ex silentio logic of the statement itself indicate that they, themselves, are not thus regulated. I find this very concerning. I have asked WellnessFX if they have anything to say that will mollify my concerns, and will promptly post their response here; if you find the above at all alarming, I'd obviously suggest waiting on that response before either signing up or (if you've already signed up) putting in any more of your data or linking them up with healthcare providers. Link to comment Share on other sites More sharing options...
nicholson Posted July 23, 2015 Report Share Posted July 23, 2015 Yes Michael, and in addition I suggest not to rely on them even complying with the little THEY SAY they will do to protect your information, if it happens to be convenient for them to do otherwise. The parts you showed in red are so loose, I rather doubt they really have any privacy policy that prevents them from providing all or any of your information to whoever they wish. For example the: "reasonably necessary to offer our services". It is them who decides when they consider it 'reasonably necessary' and that could mean sending it to anyone, anytime, imo. Rodney. Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted July 23, 2015 Author Report Share Posted July 23, 2015 Michael, Thanks for reading the WellnessFX privacy policy. That is pretty egregious. I can't imagine how they can get away with such a lax policy given the sensitivity of the information they collect. I'm glad I didn't upload any data. I'll be curious how they respond. --Dean Link to comment Share on other sites More sharing options...
Michael R Posted July 24, 2015 Report Share Posted July 24, 2015 Thanks for reading the WellnessFX privacy policy. That is pretty egregious. I can't imagine how they can get away with such a lax policy given the sensitivity of the information they collect. Well, they get away with it 'cause (a) no one reads the privacy policy ;) , and (b] there ain't no laws: as they implicitly acknowledge, companies and people who are narrowly defined as health care providers are bound by HIPAA, but (in effect) "we're just offering a web portal, dude -- no practice of medicine here!" Health apps and web tools are, in general, very much in the wild west. What's even more alarming are the many apps and doodads that claim to diagnose health conditions that have zero validation of validity. I'm glad I didn't upload any data. Oh — I'm glad to hear that! Your post made it sound like you had already started using it, which reduced my sense of urgency about posting this and contacting the company. I'm in turn glad that I didn't spend the time required to pepper you with questions about the user interface, its capacities, and the flow of the actual data from lab tests into the program ... Link to comment Share on other sites More sharing options...
Zeta Posted July 24, 2015 Report Share Posted July 24, 2015 Michael, thanks for the useful info! Arg.... This is frustrating. I may just (finally) learn the ins and outs of Excel and keep my data there, and hope that whatever online system we find permits uploading from Excel. Though if someone wanted to start an open-source project, that would sure be great.... - Zeta Link to comment Share on other sites More sharing options...
Saul Posted July 24, 2015 Report Share Posted July 24, 2015 I guess I'm lucky -- the University of Rochester provides a free such system called My chart -- whenever I do blood tests, or see a physician in the system ("Associated Health Providers"), all the data is available for me (and my other Associated Health Providers) to see. I can contact any of my doctors via that system as well. Happily, all of my health providers are in that system. (My wife is an ANP, specialized in Gastroenterology at Rochester General Hospital -- which is not associated with the University of Rochester -- but RGH has a similar tool -- which we don't use -- all of our health providers are with UR. But, this makes me suspect that most decent hospitals in the US have a similar system.) Link to comment Share on other sites More sharing options...
Michael R Posted July 24, 2015 Report Share Posted July 24, 2015 I guess I'm lucky -- the University of Rochester provides a free such system called My chart -- whenever I do blood tests [...] (My wife is [...] at Rochester General Hospital ... [which] has a similar tool [...] But, this makes me suspect that most decent hospitals in the US have a similar system.) You've mentioned this a few times before. I am fortunate enough, in this barbarous nation, to actually have truly excellent health care, and they have a system which sounds very similar to yours: it provides a simple record of all of my blood and other tests as well as giving me ready (and surprisingly rapid) secure email contact with all of my doctors, letting me manage appointments, etc. But it won't do most of the things I want it to do, and I'm guessing that neither yours nor your wife's would, either: it's restricted to the health system's own network, so I can't enter in bloodwork from before I joined them or stuff I get on my own dime outside of the system, and when I eventually leave I will lose all those records (or at best, they won't port to my new system, even if there are provisions to keep access to old records (which I've not investigated)). It's also both graphically and informatically weak, so I can't see (in a graph, like the screenshots Dean posted above, or even in a table) the trends over time, or mash up things together (like, say, HDL vs. TG, or IGF-1 vs. OGTT, etc). So it's far, far from what I'm after, and what it initially seemed that WellnessFX might provide. But please do gloat if your service indeed provides such features :) . (No word back from them yet, BTW -- but when I submitted my Q, I didn't get any kind of acknowledging email saying they'd received my Q, so maybe it's stuck in a black hole somewhere; I'm going to ask again shortly). Link to comment Share on other sites More sharing options...
Saul Posted July 25, 2015 Report Share Posted July 25, 2015 Actually, UR's MyChart does let you show data graphically or in a table. I've used these features occasionally. And there is a tool, for sharing with (some) other similar systems (which I haven't tried to set up, since I don't need it). the physicians As I recall, there is also the ability to export to Excel -- but I've never tested this; but I don't think that you can upload from Excel -- and, to the best of my knowledge, you can't enter your own information on test results prior to the installation of the system (several years ago) (The reason for the latter is obvious: Any information in the system is available to, and used by, the physicians at UR (and the Associated Health Providers). Obviously, the physicians have to know that they're acting on accurate information. Imagine what a drug adict might put in!) :) -- Saul Link to comment Share on other sites More sharing options...
Michael R Posted July 27, 2015 Report Share Posted July 27, 2015 So, I finally heard back from their customer service department: Thank you for contacting the WellnessFX Support Team. Our team has marked this request as solved [...] [Representative's Name] (WellnessFX) Jul 27, 12:37 PM Hi, Thanks for writing. Agreeing to our current privacy policy is a requirement to using our service. Thank you, ... ie, a civil if perhaps slightly brusque "Take it or leave it," AFAICS. Link to comment Share on other sites More sharing options...
kpfleger Posted August 19, 2015 Report Share Posted August 19, 2015 There are 2 separable issues brought up here that I think are best addressed independently: (1) where to get blood tests, and (2) what tool to use to track various health related things over time, especially but not necessarily exclusively the results of the blood tests. I'll just deal with (1) in this response and (2) later. Before checking out these forums, I had been trying to make a list of choices for where to get blood tests. Mostly my list was just a starting point for future research. Dean and others here seem mostly to be way ahead of me for having looked at what specific panels to get from some of the places. But I did already have WellnessFX.com on my list and can maybe add a bit of extra info. I heard about WellnessFX in 2012 from this 1hr public radio show where the CEO was a guest along with "Quantified Doctor" Paul Abramson (an old friend who is now a typical out-of-network concierge primary-care doctor with a quantified-self bent). No idea how this outfit has changed in the past few years, but they definitely had the right idea. I already saw mention of DirectLabs.com in another thread here, and Dean (IIRC) went so far as to suggest the specific panel Comprehensive Wellness Profile (thanks for that). I first saw mention of this place on another web forum long with walkinlab.com. Can't remember if it was another CR-related website or a quantified-self oriented site, but it was specifically in a where-to-get-blood-tests conversation. Haven't looked into it further. There is also insidetracker.com, which I just tried. I heard about this place and in addition to its regular panel also its "Inner Age" estimate when one of the founders was a guest on the "Quantified Body" podcast. Here's a direct link to the episode in question where you can listen to the audio, read a summary or probably read the whole transcript, as well as get links. Seems expensive for the number of tests you get and doesn't include many tests people here seem to want. The value-add (for some people) is that they present the data in a much better way than typical results from one's doctor (haven't compared vs. wellnessfix) making many of the values actionable, especially with eating recommendations, and they evidently have a team of experts combing through the literature looking for all the latest studies to help decide what markers and values of them are actually important. They also let you upload other results, but not sure how many. Hard to tell whether the extra research value is worth the extra cost. Also hard to tell how good their filtering is of the literature in terms of which studies that they derive info from are actually worthy, but you can get a sense of some of their perspective from their blog. The founder and interviewee above, Gil Blander, seems knowledgable. Of course, there ranges come from literature where most of the subjects aren't in CR. It seems they started with athletic communities as the main target clients but have been expanding to the more general public. They seem to actively suggest trying to get out of CR in response to some of my numbers when I tried it just recently. Eg, in response to my high SHBG level they suggested trying to eat more (healthy) calories because CR is associated with higher SHBG and lower testosterone. [bTW, I'm not actively trying to do CR, but I do try to eat vegan with no refined carbs, kind of in the Joel Fuhrman style of high micronutrients per calorie, and recently started experimenting with super-mild intermittent fasts (but only 12hr---nothing serious like folks here). I had been fasting 16.5hr before the InsiderTracker blood draw and that's probably my longest by far. I haven't yet researched exactly what constitutes a typical CR blood profile, but even without counting calories or measuring food at all, I have very low CRP, low WBC, high SHBG, and high albumin, though my LDL and glucose are not super low.] And now thanks to Dean I also know about the Male Anti-Aging Ultimate w/Free (Direct) Testosterone offered by Private MD Labs. Sounds like a great option for me---thanks! Maybe InsideTracker might be a better option for some of the less obsessed, like my wife, or some of our other loved ones. -Karl Link to comment Share on other sites More sharing options...
kpfleger Posted August 19, 2015 Report Share Posted August 19, 2015 On the issue of how to store, analyze, & share health data, especially blood tests: Dean, do you really just edit that masive HTML table? By hand, or with a WYSIWYG HTML editor? Either way it sounds pretty tedious and annoying. Why don't you just use Google spreadsheets (ie, a spreedsheet in Google Drive)? Excel-like editing straight within the browser, and for free you get share-ability (even fully public like your HTML table) plus graphing anything you want, stats (min, max, avg, median, sum, etc.), ratios of markers with simple division, etc. This is what I do. Plus, you can track lots of other health-related stuff besides blood/urine test biomarkers and correlate or graph them together in one place. I track basic stats like weight, bodyfat%, BMI, BP, temperature when ill. But also I track sleep, resting HR, activity like miles run/cycled, steps walked, fitness test results, fasts, injuries & illnesses, and even how many hours/week I spend watching TV/movies (<1hr/day avg). I also track time/week spent at 70+ HR (definitely not sitting time), at 120+ HR (aerobic cardo), and at 150+ HR (anaerobic running/cycling). The RHR, steps walked, 24x7 HR, and sleep data come from my Basis Peak watch. The high-HR cardio data comes from a Polar chest strap + watch (with Basis Peak as backup). The running & cycling mileage comes from my phone's GPS via Strava. It takes me a few minutes each week to copy the data about the week's activities into the sheet, and an extra few minutes for a new blood test (but probably less than it would take to add it to an HTML table). Overall, it's only a small fraction of the time that exercise & food prep takes on any given week. The only thing that really takes a lot of time is tracking all food intake precisely, so I don't currently do that. (Tried it for 3 weeks or so half a year ago but can't do it all the time.) I realize many people here do this via Cron-O-Meter or other apps. It's probably easier if one eats the same thing every week, and easier if one doesn't have young children to feed too. But for anyone not eating the same stuff all the time, all the stuff I describe above takes much less time than tracking calories/nutrition intake. You could just use Excel of course and lose only the convenience of web editing and easier sharing. Also, there is a plot style in Google Spreadsheets that is like the stock plots in Google Finance and allows quick/easy changing of time endpoints/scale plus easy toggling on/off of various data series. Useful when you are looking for connections between things. Lastly, Dean, I can understand why many people would be worried about a problematic privacy policy, but why are you glad you didn't upload any data to a site that has an iffy policy if you are shaving all your data publicly anyway? -Karl Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted August 19, 2015 Author Report Share Posted August 19, 2015 Karl, Using Google Docs or Excel to log my blood tests would certainly provide more flexibility and features. I got in the habit of just using a simple html table many years ago, and have stuck with it because it is easy to update and satisfies my basic needs. I edit the table in a simple, free, open-source, WYSIWYG html editor for windows called NVU. I'd be very interested in seeing the spreadsheet you use, with or without your data. Lastly, Dean, I can understand why many people would be worried about a problematic privacy policy, but why are you glad you didn't upload any data to a site that has an iffy policy if you are shaving all your data publicly anyway? You are right this seems somewhat inconsistent. But there is something to be said for "security through obscurity". Yes, I share a link to my blood tests on the CR society forum & (formerly) mailing list. But I don't imagine it would be worth it to anyone with nefarious intent to actively seek out my measly data and sell it to some entity that might misuse it. On the other hand, when you join an organization like WellnessFX (or 23andme for that matter), you have to worry more because they have a financial interest in exploiting your data, and hackers know there is a lot of valuable data in one place and so have an incentive to hack the system and sell the info en masse to a third party who might exploit it. Case in point, the recent Ashley Madison hack. Fortunately I wasn't a customer of that particular service. --Dean Link to comment Share on other sites More sharing options...
kpfleger Posted August 21, 2015 Report Share Posted August 21, 2015 Privacy policies are irrelevant when hackers are involved. I'm sure Ashley Madison had a pretty privacy-friendly privacy policy! Link to comment Share on other sites More sharing options...
BrianMDelaney Posted August 22, 2015 Report Share Posted August 22, 2015 Great, and important, discussion. Thanks. A thought about how the discussion could proceed (a "discussion about the discussion"): Forums are great for discussion so let's continue. But something like a wiki or a group-editable file-sharing system is very useful for maintaining a changing "finished product", like, in this case, a list of criteria we reach consensus on for an optimal health-tracking and -sharing system. The CR Society now has Google Drive account with a public folder. I just started a document called "Criteria for health-tracking and -sharing system" that is public (well, for now, it's public but you need the link). It's just a bare-bones beginning, but here it is: https://docs.google.com/document/d/1JafSvL5dtVOHTIxLC1uWqPvDcPhSiH6Hv5U4P29HmOQ/edit?usp=sharing Brian Link to comment Share on other sites More sharing options...
Zeta Posted October 24, 2015 Report Share Posted October 24, 2015 Related, though separate question, now in Health and symptom tracker. Zeta Link to comment Share on other sites More sharing options...
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