Archive for the 'iPhone Life' Category

27
Mar
10

do patients need doctor navigators to use the internet?

In the March 25 New England Journal of Medicine Drs. Pamela Hartzband and Jerome Groopman of published an opinion piece titled “Untangling the Web — Patients, Doctors, and the Internet” in which they expressed a lot of concerns about how the internet is putting patients in touch with a lot of questionable information about disease and about how it is changing the doctor-patient relationship in an adverse way.

Since, overall, my views are about 180 degrees in the opposite direction, I’d like to quote some of their remarks and comment on them. (I recommend reading the full article so the context isn’t neglected.)

Information traditionally flowed from doctor to patient; the physician described the genesis and course of a disease and the options available for treating it. Often, pamphlets were provided to reinforce the doctor’s explanation and advice. The patient might then receive additional input from family and friends, usually in the form of anecdotes about people who faced similar clinical situations.

I can only say from my experience that the first sentence about information flowing from doctor to patient is pretty ideal. When I started working at the community level for a large national cancer organization in the ’70s there were doctors who not only didn’t explain the disease well but there were some who chose, on the basis of their judgement about the emotional frailty of the patient, not to tell some patients they had cancer. They’d tell a spouse or adult child perhaps. Fortunately, things have improved and, hopefully, the “don’t tell” practice has been replaced by informed consent. Still, I think for many situations the amount of information going to patients is limited by the short time allocated to face-to-face interaction with doctors. I am a Kaiser Permanente client. They have implemented email to doctors, online lab results, and an online information resource. The docs don’t give full explanations unless you press them on it.

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims — assertions that macrobiotic diets cure aggressive lymphoma, that AIDS can be treated with hyperbaric oxygen, that milk thistle remedies chronic hepatitis, and myriad other fallacious claims. Falsehoods are easily and rapidly propagated on the Internet: once you land on a site that asserts a false rumor as truth, hyperlinks direct you to further sites that reinforce the falsehood. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.

Firstly, there is absolutely nothing new about charlatans and doctors who have been peddling snake oil and gimmick cures for generations. Again, when I went to work in cancer control my organization had a major effort to combat “quackery.” Many, many cancer patients were getting all kinds of bad advice and misinformation from naturalistic health magazines and other sources. (For a thorough tour of the quackery hall of infamy, see Dr. Steven Barnett’s site Quackwatch.) People by the thousands were going to clinics in Mexico for cancer treatments no responsible doctor would perform. This was rampant decades before the internet. There was an epic, nationwide legislative battle over Laetrile, the marketing name for amygdalin from apricot pits. Despite the best efforts of medical and public health organizations, especially in California, Laetrile production was legalized in 27 states . The arguments about “freedom of choice” from the ’70s seem to have echoed down the decades and have turned up again in the rhetoric against health reform, especially in the condemnation of  comparative effectiveness determination.

Secondly, even highly authoritative institutions have to change their tune once in a while. When I joined cancer public health in the ’70s the medical community almost universally rejected the idea that food and nutrition had anything to do with the prevention of cancer. People who talked about a relation between nutrition and cancer were sneered at and called the “fruits and nuts” crowd. Thirty-five years later as I approached retirement I had to chuckle inwardly many times about the current enthusiasm for the view that diet and nutrition are key to the prevention of much cancer. These days ya gotta eat your greens and grains!

Thirdly, doctors themselves are not always reliable sources of informaiton. That’s why we have second and sometimes third opinions. Drs. Hartzband and Groopman cite anecdotes about people who believe unsubstantiated information from the internet and suffer anxiety or waste doctors’ time. But I think most of us who have been around a few decades have our own fist full of stories from our own experiences or those of friends and acquaintances where doctors have failed to diagnose something or misdiagnosed situations, where lab tests have been wrong or complex treatments have been bolixed up in a hospital. I think the public knows all too well from well-publicized reports about medical errors by the Insyitutes of Medicine that the medical system itself is far from fault free. With regard to health it’s a risky world, even in the bosom of the medical establishment.

The article concludes:

As physicians, we are struggling to figure out how best to use this technology in the interests of our patients and ourselves. Although the Internet is reshaping the content of the conversation between doctor and patient, we believe the core relationship should not change. A relative recently asked us, “What can you possibly learn from your doctor that is not available on the Internet?” We suspect we’ll hear such radical sentiments increasingly in the future. Knowledge is said to be power, and some of the past imbalance of power between patient and doctor may be equalized. But information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by voices of authority. Physicians are in the best position to weigh information and advise patients, drawing on their understanding of available evidence as well as their training and experience. If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.

Uh, count me among the radicals. Let me say that the doctors are not totally negative about the internet, but their overall conclusion is that every patient should vet all their information through their physician. It sounds like they’re saying — like other professionsals who’ve had their domain disrupted by the internet — we’d all be better off if the internet went away and we could return to the status quo ante.

I’m just here to assert that that’s just not going to happen. The genie has been out of the jug for years and it’s not going back in. The Pew Internet and American Life Project has been documenting for years now the growing reliance of the public on the internet in health matters. Doctors just don’t seem to get it that there are needs that they’re just not satisfying. The use of digital media for health information and support is only going to increase, and rapidly.

My position is not that doctors are somehow unnecessary. However, I do believe that ordinary citizens are capable of knowing much more and doing much more about their own personal health and digital systems are an evolving platform for that. And after the so-called “health reform” slugfest we’ve been through I’m even more convinced that we all need to be more autonomous. We can’t continue to depend on a cabal of politicians, doctors, hospitals, insurance and pharmaceutical companies for our health. It’s just too important.

My suggestion to physicians is, instead of promoting a somewhat idealized notion of the doctor-patient relationship unsullied by the internet, why not work with citizens, professionals, and organizations to make the internet a better platform for the public and for doctors and patients to work together around their health issues? There are many support measures that can be undertaken. If docotors are worried about accurate information then why not build a comprehensive, evidence-based, easily accessible, user-friendly information resource? Medpedia, a project started by a consortium of medical and public health schools, is an interesting and constructive exercise along this line. Only thing is, the site is not public-friendly and so far the effort appears not to have attracted much involvement from anyone but professionals.

The concern about people not being able to critically evaluate health information is certainly legitimate. In fact, evaluating ALL internet information is an issue. But where is the support system for helping people learn how to do that? Why don’t doctors and organizations get busy spelling out some guidelines for evaluation and get them disseminated through many channels? That would be constructive and doable.

There already is a kind of parallel world of information and tools starting to envelope the health sector. (Tip: If you think the internet is something, check out the apps in the iPhone App Store supposedly intended for medical professionals but perfectly downloadable by anybody.) It’s like the way the blog-o-sphere enveloped journalism. After a lot of pining for their old, defunct newspapers, more far-thinking journalists have learned how to work with digital media and to reclaim their futures. Something similar is happening in medicine and, hopefully, perceptive medical professionals will learn how to work with it rather than try to will it away.

Advertisements
18
Feb
10

Using a couple of self-monitoring tools

I’ve mentioned before that I’m experimenting with e-tools to help me stay on track with my health goals. I’m also doing it to be able to comment on the emerging fields of personal health records and m-health (mobile health). Today I’ll be commenting on an iPhone app I use all the time to track my walking — iTreadmill — and a free graphing program I found about yesterday thanks to @accarmichael  — Tableau Public.

iTreadmill is a popular pedometer using the accelerometer in the iPhone. The app allows the recording of pace and time during a walk or run and calculates other measures.

  • Average Pace (pace over entire walk/run)
  • Average Speed
  • Calories burned
  • Distance
  • Pace (current pace, pace over past 30 secs)
  • Speed (current speed)
  • Step Count
  • Strike Rate (step rate, in steps/min)

I think iTreadmill does a good job recording these parameters, at least sufficient for my needs. They claim to have proprietary technology (trademarked PocketStep) that is supposed to enable the device to measure your movements whether your iPhone is in your pocket, clipped to your belt, or held in your hand. The stride parameter can be adjusted to fit with your stride. The app senses when you stop at, say, a stoplight and detects when you’re moving again so the elapsed time adjusts for interruptions. Pretty much everything else is calculated off your number of steps and time.

The data for each occasion can be stored so you can see your history. The latest version allows you to graph distance, steps, calories burned, and time over the past week, 30, 90 or 180 days. You can export the history by emailing the history file to yourself.

That’s a sore point with me. The FAQ says you can get a “well formatted” table from the email by copying it into a spreadsheet. But all the data from each event is just a string of characters with variable spaces between data elements. It isn’t comma-delimited so you can’t easily separate the data into fields for calculations. I tried various search-and-replace strategies to break it into separate fields but gave it up as too time consuming to be worthwhile. I’ve twice sent emails to iTreadmill asking for help with data formatting and suggesting they build in a better export format, but I’ve gotten no reply or results so far. I ended up manually re-keying my data from iTreadmill into OpenOffice spreadsheet: not my idea of how to facilitate better health behavior.

Indeed, I’m wondering if poor responsiveness isn’t pretty standard for the apps business. I’ve gotta think many of the 100,000 apps for the iPhone are done by one or two developers working out of their mom’s basement. I suspect limited support for technology is going to plague the e-health, m-health movement for some time to come.

That takes me to the next tool: Tableau Public. For me an essential quality of supporting my health program is being able to gather data with a minimum of fuss, store it, and manipulate it with ease. However, the overriding characteristic of the app world — as has been the case with IT for decades — is fragmentation and lack of common standards by which data from a variety of sources can be conveniently combined into something satisfactory. My goal is to export data from the apps I use, store it as a database (with or withyout the help of HealthVault or Google Health) and visualize it in a way that tells me how I’m doing. Since I’d manually re-keyed my iTreadmil ldata I was pleased to learn a versatile, sharable program for visualization has become available. I figured it was an omen to begin shareing my data on this blog, limited as it is.

I started only a couple of days ago with Tableau. It’s a poweful tool that’ll take me some time to master. You need to download a free desktop program. With it you open your spreadsheet or database from within Tableau, and it interprets your sheet to do a lot of the work of getting it ready for display. The resulting display files are stored “in the cloud” on Tableau’s servers. But the site sets the graphics up for embedding into various web apps such as blogs. I’ll be gathering more data, and it appears that Tableau may be a platform for integrating data into a coherent story. So, such as it is, here’s my graph for walking in January and February.

The distance walked is up and down, but when I put in the trend line (dashed line) at least it’s up. That’s encouraging!

Reblog this post [with Zemanta]
29
Jan
10

My self-tracking: the prequel

I mentioned a few weeks ago that I’m doing my thing with adopting a permanent exercise and diet regimen. (Who isn’t?) This program has evolved. Starting back in July 2009 I wanted to get on a self-improvement track. At the same time I was getting interested in what I think is a very significant trend: health 2.0, participatory medicine, e-medicine or whatever else people are calling it.

I started by setting up accounts in both Google Health and HealthVault. Neither is very suitable for what I wanted to do: keep track of my exercise and diet. Both are designed to enable people to set up computer accessible versions of the records their doctor or health provider has. Fortunately I’ve been in good health most of my life, and I don’t have any complicated records of disease episodes or conditions to put in there — even if I wanted to. I say “if I wanted to” because it became apparent that getting records into these PHR (personal health record) systems either requires hooking-up with a limited number of providers, using go-betweens, or just getting your paper records and manually transferring everything in. It didn’t seem worth it in my case.

However, I discovered that HealthVault offers the option of linking your medical records account up to the MSN Health & Fitness site. Health & Fitness is specifically for recording exercise and food consumption. The data and graphs are then accessible in HealthVault.

Good idea, I thought, so I started recording what I was doing in the fitness form. The Health & Fitness recording system calls for you to make a daily exercise and diet plan. Then you keep track of what you actually eat and do for exercise that day and enter it at day’s end. The program then compares your goals with what you really did. That was a problem for me because I never know what I’m going to eat, and I wasn’t embarking on such a controlled diet routine that I was going to control it by, say, preparing and packing my lunch to the office. So, for me, the food consumption planning was useless.

Also, the interface for diet planning and recording is poor. You can search for a food or drink and select from alphabetical drop-down menus. But no matter how many times you have the same thing there’s no way to get a shortcut to your commonly consumed items. Finally, the exercise planning and recording is set up around running or gym workouts. All I wanted to focus on was walking. Believe me, I’m way beyond the six-pack-abs stage.

After about three or four days I realized this wasn’t going to be something I wanted to do for weeks much less years. There was way too much “paperwork” involved through an interface that wasn’t very helpful. Indeed, I ran smack into what I think is a very common obstacle for getting people engaged with health routines: doing the manual labor of keeping track of your progress. There are notorious hurdles in the way of people keeping up sustained health routines, and this is a big one.

I realized pretty quickly that I needed a better way of gathering my data. Coincidentally my cell phone contract was up for renewal, and I latched on to what I hoped (or rationalized) would be a big step forward in convenience of recordkeeping: the iPhone. That was the next phase on my self-tracking saga, and I’ll go into using a smartphone in more detail in the next installment.

Reblog this post [with Zemanta]
14
Jan
10

Back on the horse that threw me

Back in late June 2009 I started on what I wanted to be a permanent health maintenance program. For one thing I was approaching retirement age. I realized with crystalline clarity that I couldn’t put off getting on a permanent exercise, better-nutrition program anymore. Time has run out on having a chance to reverse the years of benign neglect and broken self-promises. And, frankly, I got scared from seeing the point of no return of real old age peeking over the horizon. I’ve spent way too many days in long-term care facilities with relatives to ignore the unpleasant last years that many experience.  From what I’ve seen, if you want your life to end with some grace and dignity you’ve got to get active to make that happen.

I did pretty well starting and keeping a basic program in ’09. Then in the last few weeks  something entirely predictable happened: holidays, over-indulgence, relatives in the house, and, finally, a head cold. So I stopped for two weeks. But part of what I agreed with myself to do from the outset was not to take interruptions as failure. It’s just necessary to get back on the horse and get on with the journey. So Monday I hit reset and started anew. Below is a list of the modest set of things I’m trying to do. I’ll be sharing more about how these elements are going because I think they reflect some of the elements of Health 2.0 and newly available technology that will become part of individual health routines.

  1. I set goals that I can live with. Big goals? Nah, I’ve been there, done that, and I realize they’re not for me in the long run. I’m doing modest but not trivial daily exercise and diet limitations I can stick to the rest of my life. I’m preparing a chart of my goals that I’ll publish on Google Docs and link to on this site.
  2. I got an iPhone last July because I wanted to see if it could aid me in sticking with my program and keeping records. Starting this week I’ve got four apps I’m using to keep daily records. I’ll be blogging about the pros and cons of this approach.
  3. I want to create my own personal health record in a PHR that becomes my information hub. I’ve got accounts with both HealthVault and Google Health and will blog about which I think is most useful.
  4. I want to augment my PHR with my own database and information flow related to what my history and my data gathering suggests. I’ve gotta know about my cholesterol and about Alzheimer’s, the disease that strikes fear in my heart because my dad had it. I’m going to try to find useful tools to pull resources together from the crazy mish-mash of internet information. I want to keep it dynamic with things like Google Alerts and maybe social groups.

So that’s the plan. I’ll be sharing my experience, and hope others will share theirs with me.

28
Sep
09

Joining the iPhone throng

When my cell phone contract came up for renewal last July I was able to convince myself that ponying-up for an iPhone and the $30 monthly data plan made sense. Besides keeping up with the cool kids, I think “smart phones” are the next great pulse in digital evolution. Having a gateway in from the internet and out to whatever data stores you want with you 24/7 is a transition that’s as big as the invention of the PC or the internet itself. IMHO the mobile here and now digital interface is the paradigm that will shape us from now on.

So today Apple — without a lot of fanfare — announced the 2 billionth app download from its 85,000 app App Store to the more than 50 million iPhones and iPods out there. Joining the iPhone herd is not a novel move. Moo!

But the function most resonant with my background and interests is the health aspects of real-time mobile connection. The new phone coincides with my own efforts at a little better health behavior. I’ve already downloaded a number of “apps” to see how they can support my program. I’ll be working my way through the mini-programs in the Healthcare and Fitness category and a few from the Medicine category on the App Store. I’ll post more later on how this is working out for me.




Umm, Delicious Bookmarks

Archives

RSS The Vortex

  • An error has occurred; the feed is probably down. Try again later.