lucKY2b you are welcome to delete this if you want, I know this is a 50+ training thread and I can get long winded about exercise and cancer.
over 50,
Been trying that too. Very frustrating dealing with some of the stakeholders. I may have made some progress this week though, finally an encouraging email from ACSM's Exercise is Medicine group and setting up an appointment with an ACSM executive here in Indy to discuss the standardization of exercise codes - no, they are not standardized, making utilizing exercise data cumbersome, internet based or not. But I think a paradigm shift is needed for many exercise researchers, to view exercise as medicine but also to MEASURE it that way, at least in oncology, where I think too many view exercise as just physical therapy.
LIVESTRONG.com (not a supporter or detractor) has tools to record exercise and diet (down to the nutrition label), but, to my knowledge, all that data is just sitting there, I've asked! I check what other cancer 'groups' are doing, and not doing. I've tried the LIVESTRONG.com tool, seems like a good source of data among some motivated users. I even sent the idea to Lance Armstrong Foundation, they explained they are not LIVESTRONG.com, and were developing a survivorship tool but it didn't have exercise included in it.
The National Coalition for Cancer Surivorship helped develop a tool, Journey Forward, which my insurance company uses in my online healthcare tool - exercise is not included in the tool. ASCO (American Society of Clinical Oncology), along with NCI (National Cancer Institute), developed a field guide for oncologist but didn't put an exercise field in the tool. I talked to one of the developers and they agreed that exercise was worthy to put in but they were going after the low hanging fruit due to a negative report from the Insitute of Medicine on some aspects of oncology care. Well, after the Mayo Clinic findings they may be adding a patch to the field guide.
My frustration with all this, seeing that exercise was being left out of cancer survivorship tools (by survivorship advocates!) or Electronic Health Records, was that who was representing exercise in all this? I copied Exercise is Medicine board members about the ASCO field guide omission of exercise and invited them into the emails with the ASCO tool developers. They pondered if they should approach them? Pondered?!!!! I was dumbfounded. What is ACSM and EIM doing if not trying to promote the inclusion of exercise into healthcare tools and records? As far as I know, no one is promoting exercise into IT, yet most of us have access to IT tools for diet and exercise.
Then if you check out HealthVault you can find developers on a forum discussing which codes to add for different health measures that they want to incorporate into the IT tools/apps they are developing (I posted there regarding standard exercise codes). There are hundreds of health devices that they integrate into HealthVault. These developers would be glad to get standardized exercise codes to use (saves them figuring out how to embed exercise into their tool), I think a lot of them use the Compendium Codes:
http://juststand.org/portals/3/literature/compendium-of-physical-activities.pdf
These developers are plowing ahead, with real no input from the exercise research scientists. ACSM/EIM is getting left behind.
There is an awareness in oncology that data is spread all over the place, and in different formats. This slows down research. There is a new program at the Fred Hutchinson Cancer Research Center in Seattle, ICORE trying to do better evaluations using existing data and using data that is being continually generated. Some info on it:
One important aspects of ICORE is that they want to be able to integrate data stored in all the different data silos - insurance company, tumor registries, NCI, research facilities, etc. The premise of this, and I scream at my health insurer and hospital about it, is that data is being generated everyday, but everyone is storing it in different formats and in different databases. The same goes for exercise data, think of all the Garmin data just sitting online not being used. It is insanity not to start formulating an idea to coordinate integrating existing data. They are way behind the general public who are uploading things to IT devices all the time. Researchers need to stop trying to invent a new wheel and instead utilize what wheels already exist, collaborate with them.
In exercise, everyone is storing the data differently. Examples: USDA has a SuperTracker tool, which uses Compendium codes (converts exercise to METs); while the Exercise is Medicine group records minutes exercised per week (question asked by medical assistant)
http://www.ncbi.nlm.nih.gov/pubmed/22688832
; the Nurses Health Study (one of the longest ongoing health study) uses a questionnaire, which they then code for statistical evaluation
http://www.channing.harvard.edu/nhs/questionnaires/pdfs/NHSI/2010.pdf
The Fitness Industry Technology Council (FIT-C)
recognizes there are no standard codes, agrees with me on the gap, and wants to collaborate with ACSM to get it started. The European Data Format (EDF)
standardized sleep research data and would be glad to use their experience to assist with exercise codes.
In my opinion, if you want to use 'crowdsourcing' the information will not be useable unless the database is large enough or databases can be integrated, also, how reliable is the data? The standardization of exercise is the first step to eliminating a lot of problems associated with using non-uniform recording standards. Breast cancer gets the lions share of research funding and studies, even so, these researchers found that interpretation of the studies was limited due to errors in following fundamental investigative principles.
http://www.ncbi.nlm.nih.gov/pubmed/21666228
There is more but I have to go influence my health with exercise. Thanks to all for your patience. My next post will be on this week's training! Email me if you have cancer questions. Thanks!
Ken