Wish list items for MM Carelink?

[Rachel]

Given some of the recent threads about MM's Carelink site (the online tool for uploading pump, CGM, and meter data and generating report), I was wondering if people wanted to generate a wish list for the Carelink folks that I could then compile into a single document. I have a contact at Medtronic who can help us get it to the right people.

Maybe for things that are not obvious, we could also list why it is important or how we would use it?

A start:

1) a Mac interface
2) a 3-day and 1 week option for all the reports that currently have 2 weeks as the shortest option (because for small children, 2 weeks of data is too long to use for making basal or ratio adjustments - things change too fast)

oops ... need to share this computer so will add more later.

[Reagan's Mama]

It would be nice to be able to adjust the "target" glucose.

That would make it easier to see how much we really are in the 100-200 range.

This is a good post, thanks!

[EmmasMom]

Hey Amy, you can adjust that. If you go into user preferences and scroll down it will let you set up all your own targets.

[Budapest]

I moved this from the other thread:



How about if I start a new thread for a CareLink wish list? I'll pull the info into a letter to MM.

Starting a wish list would be great. Perhaps each of us could send it to MM to add more weight to the requests.


Does anyone use the two week reports regularly? So much changes in 2 weeks for us - cold, growth spurt, etc. - that I find it is too much info.
I totally agree. Putting this on the list as well.

Here are my requests:

MUSTS:
- Download CGM raw data to PC
- Upload any data from PC (e.g. Animas pump numbers exported from ezManager)
- a period of any length for reports (not just 2 weeks, 4 weeks etc.)

NICE EXTRAS:
- customizable day cut off: personally I would prefer 5 or 6am.
- ability to select which days to include in a graph:
- weekend vs. weekday, but also customizable choices. For example my son does not go to nursery school on Fridays, so they are more like weekends than weekdays. I'd want the ability to include Fridays in the weekend analysis and exclude them from weekdays.
- exclude any set of days. For example: the other day we had a site problem, so pm numbers were crazy. This is not normal and when looking for typical patterns I want this day excluded.

This is it from now... :cwds:

[Reagan's Mama]

that's funny - my MM rep told me that they can't be changed!

You really should be working for these people! :)

[Budapest]

Hi Rachel,

Too bad there weren't more responses.

Just curious if you contacted MM already with your wishes?

Good luck CGMing.

[Rachel]

Hi Rachel,

Too bad there weren't more responses.

Just curious if you contacted MM already with your wishes?

Good luck CGMing.

I still think we'll have a pretty substantial list. I was going to work on it this weekend. We've been battling crazy numbers (so glad to have the CGM!) so sleep has been in 2-3 hour blocks these days. Probably in too much of a fog this week to pull my ideas out of my brain. :cwds:

I'll post it before sending it for more input and can email it to anyone else who wants to send it too.

Off to download data to see if there is a pattern in the bg madness!

When do you get your MiniLink and get started with it?

[Budapest]

Off to download data to see if there is a pattern in the bg madness!

When do you get your MiniLink and get started with it?

Any luck finding patterns?

We met the rep two weeks ago. Then she said, no problem, she will have a unit flown in in a couple of days. We were pretty excited. Since then I heard various things, the latest being by next week for SURE, latest April 26. Another week... One of the problems with this whole delay is that we are losing the motivation to fine tune :( b/c we will have the CGM so soon, right? and his numbers are going crazy in the meantime. :mad:

Anyway, I am using this time to look into serial-port monitoring so that I can save the CGM data on the PC and/or upload data from our Animas pump. This will take some more effort though.

[Rachel]

... here is a first pass at this. I've attached it as a zipped word doc but will copy and paste too. Looking for whatever feedback/ideas you all have time to give!

******
Dear Carelink Programmers,

We are parents of children with diabetes who are using some components of the CareLink online tool, particularly with the MiniLink or REAL-Time Guardian systems. We all are so thankful to have access to the CGM technology and deeply appreciate the many benefits of the systems.

We met via an online forum (childrenwithdiabetes.com) where we regularly give and receive support as we deal with the daily management of our children’s diabetes. Through our online discussions about the MiniLink/Guardian systems, we have identified some ideas that we think can help improve CareLink and are sharing them with you in the hopes that the system can become even better.

Flexibility in Dates Used within Reports
We find the report feature of CareLink very user-friendly. But while the set of reports available provides a solid foundation for analyzing our children’s data, the date range that is fixed for most of the reports is very limiting, particularly to those of us with small children. Ever-fluctuating growth hormones, frequent common childhood illnesses, changing food preferences, and unpredictable physical activity all impact our children’s basal and bolus dosing plans, often on a daily basis. We look at data more often and differently than a diabetic adult with more stable insulin needs.

It would greatly improve the strength of the reports if users were able to:

1. Select any length for the reports, i.e., not just 2, 3, or 4 weeks. For example, many of us change basal rates based on no more than three or four days of data so getting a report with that short of a time frame would be helpful.

2. Select specific days to include in a report (e.g., M, W, F). For example, a parent with a child in pre-school three days a week could select those specific days, over a set date range, to see if there are patterns specific to preschool days. Or someone might choose to look at just the weekend or weekday data.

3. Exclude specific dates from the report. (It would probably be important to note somewhere on the report that this data is excluded.) There are so many factors that can “ruin” a day’s numbers, from a bad vial of insulin, to undercounted carbs, to a bad set change, to a birthday party with too much cake. As parents, we often know the story behind the data and would know which days deviated greatly for the norm. One bad day of numbers can really skew the daily averages in a report and we would like to be able to use just the typical days when analyzing data for basal or bolus adjustments.

4. Customize the end-of-day time. It is hard to wait until midnight to get a day’s data included into a report, particularly if you are hoping to use that data to adjust basal or bolus rates for the next day. We understand that you can see the data for an unfinished day on the Daily Sensor Overlay report (CHECK NAME), but you cannot currently get any of the other reports to include a day until midnight. For those of us chasing toddlers and preschoolers all day, the time after the child’s bedtime is ideal for looking at the data for the day and making any necessary adjustments.

Reporting Same Data as Seen on the Pump/Monitor Screen
We look at the pump/monitor screens a lot, day and night. We appreciate all the information that is available to us immediately and have come to depend on the on-screen features for adjustments made on the fly. It would be wonderful to have access to the same information once the data is uploaded into CareLink, specifically the following:

1. A breakdown of the bolus insulin delivered so that it is clear if it was a carb bolus or a correction. This information is critical for allowing us to determine the effectiveness of both types of boluses. On the Daily Report (GET NAME), one can look between the graphs to see which of the boluses had no corresponding carbs (and so is just a correction), but this trick does not help with there is a correction included with the carb-based bolus. Without this information, users need to keep meticulous hard-copy records of corrections in order to accurately see the impact of a carb/correction bolus.

2. An inclusion of the rate-of-change arrows in the reports. (WHY DO WE WANT THIS? I know how much I use this in a day but my mind is going blank on how we might use this info in the reports).)

Downloading and Uploading
One of the great strengths of the CareLink program is that it consolidates so much data in one place, allowing for us to make connections and see patterns among various types of data. The following suggestions are to increase the data included within CareLink and to give patients greater access to it. We would like to:

1. Download raw data from the CareLink site (e.g., as an Excel or tab delineated data file). This will allow those who are Excel savvy or have other data analysis needs to work with the data in whatever format best suits them. If you did this, you could also ask users to share their report templates, thereby getting some free product development to further enhance the Carelink system.

2. Include data from other insulin pumps (e.g., from a software program of another pump that provides data in spreadsheet format). While we understand that you are not in the business of providing data analysis tools for other insulin pump manufacturers, giving Guardian users the tool to analyze their pump and CGM data within one data system would be a huge benefit. The more data that is available to the user, the better their data analysis and related management decisions will be. We imagine that this support would also increase brand loyalty for MiniMed CGM systems.

3. Include data from the OneTouch Ultra2 meter or any other highly used meters that are not currently supported within the CareLink system. (Note: the Ultra2 has been provided to newly diagnosed patients for over a year now and the Ultra is no longer available, so it seems reasonable to put the Ultra2 into the system.) Again, while you are not responsible to support all the other medical devices out there, the more data you allow into the system, the better it will be for the users.

4. Allow for uploads and data analysis from a Mac computer. There is a significant learning curve necessary for families learning the pump and CGM technology; it would be helpful to allow for Mac users to use the computer system that they currently have, rather than purchasing a PC. While technical workarounds do exist for Mac users (e.g., Parallels software or Boot Camp for those with the new dual processor), the level of set-up and troubleshooting necessary for them are prohibitive for the majority of computer users.

Closing statement … contact information?

[Budapest]

... here is a first pass at this.

Excellent! :) :)

Just a couple of observations:


3. Exclude specific dates from the report.

I'd add: or exclude specific data from the BG meter -- for example a high because of sticky fingers. Or another approach like when calibrating: if there are two readings on the BG meter within 15min, only use the later one.

4. Customize the end-of-day time. It is hard to wait until midnight to get a day’s data included into a report,

In addition to what you wrote, I think it would be helpful to look at the night in one continues stretch, so I would prefer a cut-off either at the beginning of the night or at the end, in the morning. With the somewhat random break at midnight it is more difficult to see how nights unfold.

Reporting Same Data as Seen on the Pump/Monitor Screen
... It would be wonderful to have access to the same information once the data is uploaded into CareLink, specifically the following:

2. An inclusion of the rate-of-change arrows in the reports. (WHY DO WE WANT THIS? I know how much I use this in a day but my mind is going blank on how we might use this info in the reports).)

I suggested something similar and maybe was not clear enough: I meant to include the arrows on the "history" screens on the monitor. When you go back with the down arrow on the graph it shows previous SG numbers, but not the arrows anymore. Maybe it would be nice to when there were arrows, but not essential.

Downloading and Uploading

1. Download raw data from the CareLink site (e.g., as an Excel or tab delineated data file). This will allow those who are Excel savvy or have other data analysis needs to work with the data in whatever format best suits them. If you did this, you could also ask users to share their report templates, thereby getting some free product development to further enhance the Carelink system.

The above would be particularly important while #2 is being implemented.

2. Include data from other insulin pumps

4. Allow for uploads and data analysis from a Mac computer. There is a significant learning curve necessary for families learning the pump and CGM technology; it would be helpful to allow for Mac users to use the computer system that they currently have, rather than purchasing a PC. While technical workarounds do exist for Mac users (e.g., Parallels software or Boot Camp for those with the new dual processor), the level of set-up and troubleshooting necessary for them are prohibitive for the majority of computer users.

Or maybe it could be more general: Enable access from non-Microsoft systems as well (Mac computer, e.g. Firefox browser even on Windows etc.). I'd think the Java interface that they are already using is NOT browser/operating system dependent.

Closing statement … contact information?

I am glad to give you my contact info to be included.

Actually I just sent them a brief message through the minimed.com site because I could not upload anything to the carelink site -- not even through the Contact us form. I lost my weekly window of opportunity to peacefully analyze the numbers because they are having technical difficulties. This is not fair.:mad:

Anyway, great job Rachel.:cwds:

[Rachel]

Fabulous - nothing a writer likes more than detailed feedback!!!

Great suggestions all. I'll make the edits, turn it into a pdf doc and send it to you. I'll send it to our MM rep and to our friend who works at Medtronic and you can send it out to whomever too.

Do you want to pm me your names and email?

By the way, I was on the CareLink site late last week ... have you ever noticed the CUSTOM option at the top (I think it is is called "reporting period"). That solves the problem of the 2 week limit for all but two of the reports. Don't know if this is a recent change to the site or if I just never saw it.

[Budapest]

Actually one more afterthought: Officially the CGMs are not approved for under 7s. I am debating whether to leave references to younger kids in the letter or not. On one hand their legal dept. might tell them not to deal with any off-label patients, on the other hand I am sure they know that it is used by young kids and might be interested in the feedback from these as well.

What is the opinion of your insider contact?


Great suggestions all. I'll make the edits, turn it into a pdf doc and send it to you. I'll send it to our MM rep and to our friend who works at Medtronic and you can send it out to whomever too.

Too bad not too many other people seem interested in this topic. Either we are overly obsessed with this :) or not too many other people have it to begin with.

By the way, I was on the CareLink site late last week ... have you ever noticed the CUSTOM option at the top (I think it is is called "reporting period"). That solves the problem of the 2 week limit for all but two of the reports. Don't know if this is a recent change to the site or if I just never saw it.

I noticed it and I also got excited. However, it seems to me that only about half of the reports can be actually generated for the custom period. When selecting the following, it still only gives 2, 4, 8, 12 week options and that is what it actually generates.

Quick view summary
logbook diary
Modalday BG
Trends summary

Oh well. Maybe they will improve it further.

BTW are you also having problem accessing their carelink page recently? -- They seem to have fixed the problem after at least 3 days.

[Mama2H]

It all looks good to me with the edits from Budapest. So far the Carelink software has been ok for us. The biggest problem I am having is with the alarms being too quiet LOL.

[rickst29]

The number one thing has to be the alarm volume, in both pump and Guardian. This was key in my buying Dexcom instead. (The other factor, back when I was choosing, was the huge Transmitter and connection wire.)

I've seen at least two others post on Insulin Pumpers of the same problem: bought Minimed, used it for a while, with nighttime problems uncaught due to low alarm volume, sent it back and replaced it with the Dexcom-- in spite of the 'shower patches' and having to carry the separate monitor. They are/were both Minimed pumpers.

[Budapest]

The audible alarm on the new Guardian is pretty aggressive. After a while it starts to siren like an ambulance -- OK, not quite THAT loud:) . Also, if you are wearing it, you can set it to vibrate and that should also wake you up -- in case it doesn't, it will start to siren as well.

[Rachel]

Here are notes about the final edits we made on the letter, for anyone who is intereste:

- added bg meter as example of what to be able to exclude
- addressed the end of day cut off issue (gave another example)
- took out the request for the arrows to show on the carlink site
- didn't add in the arrows to the "history" request as it isn't something the carelink team can do anything about ... something to add to our letter about the pump/monitor!
- switched the order of 1 and 2 on the download/upload section to stress the importance of being able to upload other pump data
- expanded the mac issue to non-MS as Budapest suggested

We'll let you know if we hear back from them!

[rickst29]

The audible alarm on the new Guardian is pretty aggressive. After a while it starts to siren like an ambulance.
That's GREAT!

Back when I tried it, over a year ago, it was :mad: .