Need your opinion on a health tracker!

There are certain things I would like to track, and things I probably should be tracking; but I'm like flash. I make notes on a daily calendar, if I decide to track at all. During chemo, I made myself a spreadsheet (on my laptop) and tracked my symptoms and presumed chemo SE's.

Like flash, I really am hesitant to use an on-line method. (I don't even use the stuff my health insurance company provides its policyholders to keep track of their diagnoses, prescription drugs, doctors' visits, etc.)  I would never use something public to log entries for those things.

I do think some of us have a tendency to become obsessed with every ounce of liquid we drink, every calorie of food we eat, every perceptible pain, every pound we gain or lose...   Sometimes that isn't a good thing.

otter

[Edited to add:  OTOH, some of the women on the BCO boards find tracking their weight and their exercise habits to be really helpful; and putting it out there for others to see can serve as a motivator.  So even though I probably wouldn't use it, there might be others who would.]

I love the idea of a tracker, especially if the data can be viewed in several different kinds of formats / graphs.

 I'd personally like to track, chemo side effects (maybe even with a modifier to indicate severity), grams of fat eaten per day, servings of veggies, how much VitD did I take, exercise, and  weight.  I don't think I'd track mood, energy level, but maybe a customizable one, like I might add meditate.

 Back to side effects, I think it would be cool to look at the cumulative experience of all the members  regarding their experience with chemotherapy (by type).  Of course protecting privacy.

Melissa,

It appears that you are frustrated with your job at present! I don't know what the staffing structure at breastcancer.org is for oversight of these boards, so I don't know exactly what your role is. I have seen you referred to as "moderator". Does BCO have a "community manager"? It appears to me that you may be being asked to fill that role as well and I am not sure what experience you have or training you have been given, so if you know all of the below, I apologize.

A good starting point might be to explore communityspark.com. From there you might find individuals with experience in the  field who would be willing to offer you advice or direct you to further resources. Online community management is a new but growing field. If you have just sort of found yourself in it by default, you may want to explore it more, and you may want to make your bosses aware of the value of it.

There are many, many discussion boards and online communities on the web. They all operate somewhat differently. They all do seem to require much more hands on time from moderators (paid or volunteer) than the website founders first realize if they are to be productive, positive places to visit. Reviewing thousands of daily posts would surely be an overwhelming task, but most of the posts are not a problem. From my experience, spending a few hours online a day in the active topic threads would be enough to give one an overall perspective on where the issues are

A few specific thoughts --

1. Have a brief summary of the terms of service that you can post quickly and frequently when you see things edging out of hand.
2. When you delete posts replace them with a short statement of why, which term of service has been violated. For example "deleted due to name calling". 
3. I don't know what the medical oversight is (or should be) for the threads. That needs to be decided at a higher level than you! But if there is a "hands off" policy in terms of letting people say whatever they want about medical treatments (Fungal Theory thread is a good example here) I personally would appreciate the moderators every now and then popping in with a canned statement along the lines of "members of this board are not medical experts and your care should be overseen by your personal physician". 
4. Try to keep the banning/deleting/reminding process as impersonal as possible and as transparent as possible. Users should know why they got in trouble, what their penalty is, and how they should behave in the future. Keep repeating the terms of service.
5. One reason some boards use volunteer moderators who have been active valued members of the community in the past is that it is good to have people who are online frequently building a positive community. You have people like that -- Bessie in the DCIS forums, Binney in LE, Otter on all things research -- come to mind. If you don't want to use official volunteer moderators (and I would seek input from a community that does use them to see what has worked and what hasn't before setting up a program) another approach often used in children's online communities is for a moderator to have a "member persona" on the board and use it to encourage positive interaction without being perceived as an intrusive "official" presence.

Good suggestions from revkat, although I can't say I have followed any threads where I have seen any of the bad behavior alluded to.  Konakat, that is appalling that such mean-spirited comments have been made by some.

As for the health tracking concept:  I read everything available from every source and spent innumerable hours reading these boards when I was going thru my initial treatments (I have been blessed to have had no recurrences since) and was shocked to see that there were no statistically sound data that would allow someone to predict the SEs they would experience.  The docs don't track this, since this is incidental to treatment - they care about eliminating the tumors and preventing or treating recurrences and the SEs are secondary.  

I at one time had started compiling all of the data on the ladies in the "Starting Chem in March 2009" thread - when they lost their hair, what cocktail they were on, their dx data, what other SEs they had and on what days of their treatment cycles - just so that I could try to "give back" that info to the next round of "lucky" sisters.  

 It got too much for me, I was trying to work and was sick as a dog during chemo, but I have often thought how helpful it would have been to know that X% of patients on TCH (my regimen) were able to function normally, and Y% spent several days in bed following chemo. Etc, etc.

I know this is a different thing from the SELF tracking that you are asking about Moderator, but it could be derived from data people tracked on themselves.  I appreciate the concern for privacy that many have expressed, but given that our employers or insurance companies know we have cancer, what difference would it make for anyone to know that I was knocked pretty much unconscious for three to five days after the dexamethasone wore off each cycle? 

There are data mining companies that can piece together info about us that we leave as a trail of crumbs on the web (I am in the IT field and know a bit about this) but it is extremely costly and without a huge profit motive, there is little incentive.  I am sure that pharma companies might find such data of value, but to know about specific information about individuals?  I can't see that.  These companies care about selling something, so they just want statistics, not people's names.  

Just my two cents.  So YES, I would be interested in a Health Tracker! 

ipursuit,  sorry to disagree but if you are applying for a job, getting insurance it does pay for a company to have someone research you as an individual. It was scary when my neighbor showed me just how much is researched.  There is absolutely no privacy and it's scary what conclusions are drawn.

I  found this cool health 'point system' tracker in one of my dad's retirement magazines.

Three catergories:

1. eat well

*healthy breakfast-1 point

*healthy lunch-1 point

*healthy dinner-1 point

*healthy snacks only-1 point

* 8 glasses of water a day-1 point

2. exercise

* 30 minutes-2 points

* 45 min.-3 points

* 60 min.- 4 points

3. nuture

* feed your spirit (pray,mediatate, listen to music, journal etc.)-30 min. -1 point

* care for your social network (time with family, friends, volunteer etc.)- 60 min.-1 point

* do what you love (hobby, cook, garden, read, etc) 30 min.-1 point

* sleep at least 7 hours- 1 point

I would think so!!!!!

edited to add, as long as we are playing nice......

Hi  -- I don't post much, just lurking to understand better my daughter's diagnosis.  I had sent a PM to the moderators asking if anyone had given any thought to measuring the benefit of getting information on this site, in particular for IV patients.  Never got a response.  There is so much info shared here, and so much advice apparently taken -- does it make a positive difference?  If it does the value of the site in assisting patients in understanding options for managing the disease is huge.  If it makes no difference -- that is to say survival rates for IV (or any stage)  are not affected at all by the sharing of information -- then its value would be simply the same as a support group, which if I am correct does not have any effect on long term survival.  It might be impossible to measure the effect, but I think it a more interesting question than "health tracking." 

In terms of "health tracking" the info would be valuable in the aggregate to pharma for sure or any company marketing to the unique cohort that frequents these boards.  And I suspect BCO could benefit somehow from providing the info.    

River horse- this site absolutely makes a difference.  I have known many that changed and survived longer than originally told because of this sites information and the subsequent change in tx.  Unfortunately, that's the type of info that's almost impossible to quantify or prove.  Also, I think you need to focus on quality of life at stage IV not just quantity.  BCO definitley improves quality.

Tracking our detailed health information that is not public would be helpful. That would give a place to retrieve information for other health care providers or if we change doctors. One of my doctors uses paper charting and does not communicate everything because of complicated situation. I am also going to be in out of state trails and Hopkins/Lombardi being able to get to my medical records wold be helpful. I would also like to see a national registry for clinical trails. this would enable the researchers easier recruiting and us a lot less work to figure out what trails we are eligible for. It is very time consuming to go through clinicaltrails.gov

Thanks for asking!

I tracjk things on my calendar and have one big drawer for all my paperwork. It just seems easier.

This would make a good research study.  Or several.

• Test hypothesis:  "breast cancer patients who tracked their health care behaviors / side effects / whatever" had better satisfaction with their treatment and better compliance than those who didn't."

• Design study longitudinally so that you could test hypothesis "Women who tracked ... had better outcomes / greater survival etc. at 10 years.. 15 years" 

It seems more like a public health or nursing topic rather than one that would appeal to surgeons, etc.   

I am currently using LoseIt to track exercise, food, weight drinks...etc.  I would welcome a health tracker here.