Sunday, 23 November 2014

Review: The Abbott Freestyle Libre

The Abbott website proudly announces...

The days of routine glucose testing with lancets, test strips and blood are over. Welcome to flash glucose monitoring!

In the small print it expands on this to say that if the Freestyle Libre indicates a rapidly changing level or if it suggests you are hypo (or near hypo) then you should do a finger prick test to confirm.

A finger prick test using a blood glucose meter is required during times of rapidly changing glucose levels when interstitial fluid glucose levels may not accurately reflect blood glucose levels, or if hypoglycemia or impending hypoglycemia is reported but the symptoms do not match the system readings.

What they don't tell you is that you will also need to continue with a finger prick test before driving (and every 2 hours thereafter if on a long drive) to meet current DVLA requirements. In the minutes of the meeting of the Secretary of State for Transport's honorary medical advisory panel on driving and diabetes mellitus, held on Tuesday 14th October 2014, Section 6.1 it states:

The Panel also considered continuous glucose monitoring systems (CGMS) which measure interstitial glucose. At present it was considered that there is too little evidence to suggest that CGMS alone is a reliable measure of glucose levels. They advised that drivers using CGMS must also monitor blood glucose as advised for insulin treated diabetes in the ‘At a Glance Guide to the Current Medical Standards of Fitness to Drive’. This will be reviewed at future meetings as more data becomes available and when there may be comprehensive regulation of such devices.

However there is no doubt that if the readings provided by the Freestyle Libre are accurate, then the amount of finger prick testing will reduce.

So what does Abbott say about accuracy?


The key message they want people to know is that it

Requires no finger prick calibration
This is clearly aimed at highlighting one of the key "benefits" over current CGM systems which require a number of finger prick tests to ensure accuracy of results.

The FAQ also states:

11. Is the accuracy of the sensor consistent over the 14 day wear period?
Yes, the accuracy of the sensor remains consistent for up to 14 days.

In practice I found this not to be the case  which is bitterly disappointing after spending £138.25 on purchasing the starter kit (£133.29 kit + £4.96 postage). Others fortunately have found accuracy not to be a problem (particularly after the first day of use). I will cover my own experiences on accuracy in more detail later.

A closer look at the starter kit



In the box


The starter pack consisted of three boxes: one for the reader and the other two for sensors.

The reader box contained the reader itself, a quick start guide, a user guide, usb cable and charging plug.

Each sensor box contained a sensor, applicator, alcohol wipe and instruction guide.

What's missing?


I was surprised that the reader didn't come with some kind of carrying case and since finger prick testing will still be required it was disappointing (and most probably a missed opportunity) that no finger pricker, lancets, blood or ketone strips were supplied.

Indeed the documentation provided didn't even provide details on how to get your prescription changed to Abbott blood test/ketone test strips - surely something they would want you to do? I can only assume that this was a marketing decision that thought that providing these things didn't sit well with the "routine blood testing is a thing of the past" message.

I was also surprised that a summary wasn't provided on the differences between blood glucose testing and interstitial glucose testing. I'm sure many phone calls to the help desk could (and would) have been avoided if such an explanation had been provided. Most people will naturally want to compare readings between their current method and the Freestlye Libre and if they don't understand the differences in measurement, the timing differences and the clever software being used to try an reduce the time delay then questions are surely going to be asked.

The reader

Comparing sizes
Freestyle Libre vs MyStar Extra
The reader fits comfortably in the hand and can read the sensor through clothing (even a coat!). The determining factor on how discrete scanning will be is based on where you place the sensor but it is certainly less obvious than doing a finger prick test and certainly less hassle - no worrying about washing hands/ensuring they are dry etc.

Described as a touch screen display on their website it seems to be a screen with 12 pressure zones. In the right lighting conditions when you hold the reader at 45 degrees and tilt it slightly towards you it is possible to make out the individual zones. If you perform a self test the last test in the sequence allows you to check that each of these 12 zones is responsive to touch. Unlike the FreeStyle Optium Neo and InsuLinx this seems much more responsive to touch and requires less pressure to be applied on the screen to be acknowledged.

Applying the sensor


It's interesting to note that if you look on the Freestyle Libre website, all of the images show the sensor being placed on the side of the arm yet the documentation provided with the kit suggests the sensor should be placed on the back of the arm.

For my first sensor I selected my right arm, on the side near the back.
For my second sensor I selected the back of my left arm.

With the first sensor I had a dull throb inside my arm where the sensor was inserted for slightly longer than one hour, but there was no pain at all when applying the second sensor.

Initially with the first sensor it felt odd. I could feel my clothes against it. I knew it was there.
Thankfully as time passed I started to accept it more and more and I became less aware of it's presence on my arm. It took a number of days before I was fully comfortable with it and I'm sure part of this process was delayed due to my worry that I might damage it in some way and cause £50 of kit to become worthless. By the end of the two weeks the only times I was truly conscious of the sensor on my arm was when I was washing or drying and during the scanning process... oh and, most annoyingly, when I had an itch under the sensor which couldn't be dealt with due to the lump of plastic on my arm!

I didn't have any of these issues with the second sensor. Indeed sometimes I would be waving the reader around trying to find exactly where I'd placed the sensor!

Day to day usage

MyStar Extra: 4.8 mmol/L
Libre blood test: 5.1 mmol/L
Libre scan: 3.6 mmol/L and stable

In general, I found the Libre to scan consistently lower compared to a blood test (even when using the Abbott test strips).

The example shown here shows the scanned result says I'm hypo (3.6mmol/L) and both the Libre blood test and MyStar Extra blood test says I'm far from it!

In fact the Libre blood test says I'm good to drive under DVLA rules and the MyStar Extra says I need something to eat.

If the DVLA accepted the Libre scan for driving (which thankfully they don't!) I would need to treat and wait 45 minutes before making a journey.

No wonder the small print mentions testing blood when the Libre says hypo!
This is one of the main reasons why I lost confidence in the Libre.

I think it is extremely telling that the insulin calculator can only be used when a blood test has been completed on the Libre and that the calculator is not available when you do a scanned test (even if the directional arrow says stable).


The Reader - User interface niggles


Entering carb and insulin doses takes time!

The reader doesn't remember your background insulin doses, so every morning and evening you have to input the number of units using the up/down arrows starting at 1 unit. When your background dose is 24 units at night that takes time even when you press and hold the up arrow!

It's a similar problem when entering your fast acting insulin doses - it always starts at 1 unit and only goes up by one unit at a time.

Entering carbohydrates has similar frustrations too. It always defaults to 15 grams (that's not even a slice of toast!) - I'm sure that's fine for low carbers but if you plan to have a pizza then it's getting cold by the time you have input all the correct numbers :/

If the numbers jumped by 10 when you press and hold the up or down arrove rather than moving by 1 every time then it would be a lot quicker.
Of course the other option would be to display a numeric keypad but given the limitation of the touch screen this isn't really possible.

Despite the time consuming nature of entering values (I admit it, I was bored!) I've identified that the entry limit on carbs is 200 grams and the limit for an insulin dose is 50 units. I suspect this is more than enough for most people but interesting nevertheless that they've imposed these particular limits.

Maximum amount of carbohydrates
Maximum amount of insulin
If you forget to enter additional information against a reading you have a limited amount of time to go back and add it. If you re-scan or wait too long then it is impossible to put the information in. So if you want that pizza warm and your carbohydrate and insulin dose recorded then you are going to have to compromise. If you don't add the carb & insulin information at the right times then the value of the information provided via the free software is diminished.

When the sensor expires

Boy, you know when the sensor is about to expire! Why? Because it can't stop telling you!

This is one of the most annoying features of the product.

Three days before the sensor expires you get a reminder.

That's great as it gives you the opportunity to re-order a sensor, although given the 3-5 working days for delivery maybe the reminder should be a little earlier?

After that it starts to get annoying and doesn't really seem to have any other purpose than to annoy you. It reminds you at 2 days, then at 1 day...
 ...then hourly...
...and in the final hour (if you scanned every minute) it would remind you every minute!

Quite what they think a customer of the product is going to do at 7 hours to go, or 45 minutes to go, that wouldn't be done if the system didn't remind them I'm not sure, but I can tell you that all it made me want to do is throw the darn thing at a wall. What is particularly annoying is that the warning message is also accompanied with the vibration used to indicate a hyper or hypo situation.

Annoying! Annoying! Annoying! 

If Abbott really feel the need to hassle customers like this then they should at least give the option to click a button that says "Thanks for the reminder. I don't need reminding any more. I'm well aware that the sensor is about to expire!".

Immediately after removal
The sensor
After cleaning

The website, ordering and customer service


In the run up to the release of the Freestyle Libre Abbott tried to whipped up a bit of a frenzy, getting people to register on their site for more information. So it was somewhat surprising to find that ordering was available from the 17th October but people who had registered for more information only got told on the 22nd October - five days later!

To be honest it was most probably a good thing because many people experienced problems with the ordering process. For myself the ordering went through fairly smoothly and I received an email confirming my order... but then it started to go wrong.

Website order information page

I was supposed to get an email providing my tracking number once my order had dispatched but I didn't receive the tracking number until the 24th October, two days after they had tried to deliver it. Indeed the Libre sensor was already in my arm the day before I received that email!

Trying to obtain my shipment information threw up this error
When I saw my order had shipped I tried to use the website to find out my tracking number but clicking on the invoice link also threw up an error. (Thankfully this particular issue has now been resolved but if it had been working at the time I still wouldn't have my tracking number.)

So on the 22nd I decided to ring the customer support number to find out my tracking number - little did I know that whilst I was tried to call them the delivery company was trying to deliver it!

I rang the support number (008000 - 2255 232) provided on the website only to be routed to German only speaking call centre. I tried again and the same thing happened.

I then went to the generic Abbott diabetes website and obtained the 0500 467 466 support number. This thankfully put me through to an English speaking call centre.

The support representative sounded hassled and wasn't particularly helpful. I asked if they could tell me my tracking number given the website said the product had shipped. I was told I'd get an email when it shipped and the gentlemen wasn't interested in the fact that I hadn't received one. He told me none had shipped yet and wasn't interested that people already had them. He told me to wait for the email and made me feel like I was asking an unreasonable question and wasting his time.

He then went to to explain that "many patients have been ringing up..." Whoa! Patient? I'm not a patient of Abbott, I'm a customer and all of the other people ringing up are customers too. I really wasn't impressed with this guy calling me a patient. If I wasn't ringing from an open plan office I would have given him a piece of my mind, hassled call centre representative or not! Luckily for him I was and so I just put the phone down resigned to the fact that Abbott had my money and didn't care if I got what was promised or not.

When I got home I had a card telling me they'd tried to deliver the Libre whilst I was at work - so much for none have been dispatched!



Apparently I was hypo, but given I didn't have hypo signs
and my own meter said I wasn't, I disagree!
When I found out my Libre was reporting bgs about 3mmol/L lower than my current bg meter I dared to ring up customer services again hoping to find out a way to calibrate the results. I wish I hadn't! I finished the call feeling like I'd been called just short of a liar. The attitude was that my own meter must be wrong, my own hypo awareness must be lost and the Libre was telling the truth and I've spent entire afternoons and evenings hypo without realising it.

I had also ascertained that it wasn't possible to do any calibration and Abbott wouldn't entertain any concept of the readings being incorrect unless I tested using their blood test strips in the Libre.

Given they hadn't provided any in the starter pack they said they would send out ten test strips to allow me to test and I'd receive them the following day.

The following day readings were much better (not "perfect" but more acceptable) and I decided to ring up to say so. They weren't interested. At first they thought I was ringing to ask where the test strips where and before I could correct them they were telling me it would be 3-5days before I got them! Tip to Abbott Customer Services - listen to what your customers are saying before responding! When they realised what I was saying they completely lost interest, didn't even want to know my name, just wanted me off the call.

By the time the test strips arrived I was pretty much at the end of the 14 days usage and although I wasn't totally convinced by the accuracy it seemed pointless to check.

I tried them with the second sensor and it seemed like that helped calibrate the readings quicker but that might have just been a coincidence.

Needless to say I didn't bother ringing the customer services line to tell them the numbers of the blood test matched my own meter and not the Libre scan. By this time I'd given up with the attitude of Abbott Customer Services and written off my "investment".

I did however take my Freestyle Libre reports to my DSN who was interested to compare them against the information from my own bg meter that had been downloaded to the DIASEND software they use. She was shocked at the differences and concerned at how often it said I was hypo compared to my own meter. Needless to say she was somewhat underwhelmed by the Libre accuracy too.

Comically if I did want to order a new sensor I can't. When I go through to the checkout process I can't get past the the first step as it now claims my Street Address is greater than 35 characters - it isn't!

Abbott won't let me order a new sensor even if I wanted to!


The Freestyle Libre software


Hats off to Abbott here, the software is very comprehensive and allows you to export data so you can combine it with other data should you wish or create your own reports.

I suspect the biggest challenge for many people may well be in interpreting all the data provided (although some of the reports do give you a dashboard and some helpful suggestions). Unfortunately little help is provided in the manual, instead plenty of "IMPORTANT: Work with your HCP" comments litter the document.


Examples from the user guide


A large variety of reports are available

Conclusion


If you ignore the actual mmol/L values the Libre displays (now that is a bold statement!) the Libre does give valuable insights into bg trends showing the movements due to stress, different foods, exercise etc. It can easily show you if your overnight basal dose keeps your bgs stable... no need for a 3am check, so it does win some points for allowing me to sleep through the night... but no more than 8 hours sleep otherwise there will be gaps in the data collected :)

The proposition (for me) seems to be convenience at the expense of accuracy, but accuracy isn't something I am willing to sacrifice. If Abbott can resolve the questions around accuracy, improve the customer service experience and allow me to order(!) I'll be fighting my way to the front of the queue... but until then, the future for me is finger prick testing!


Other Freestyle Libre blogs



Wednesday, 5 November 2014

A hypo in Berlin

For the first time I felt I wasn't prepared enough.
For the first time I felt diabetes was in control.
For the first time... I felt vulnerable.

It was after my wife and I had enjoyed a lovely meal at a restaurant in East Berlin, where the irony of a flashing neon sign above the entrance reading "Capitalism kills love" hadn't been lost on us. We decided to walk home rather than catch a bus as we'd just eaten a superb pudding - it seemed sensible. That was the second mistake.

The first mistake was clearly miscalculating the true carbohydrate content of my meal and the impact walking throughout the day would have on my numbers.

It should have been easy.

The only carbs in the three course meal were some chips and a lemon meringue tart.
I had the carbs and cals app on my phone to assist.
I knew the amount of walking (and climbing) I'd done during the afternoon.
Yet somehow I managed to get it wrong. Seriously wrong.

So, whilst walking "home" through the dimly lit streets of Berlin, I had a feeling. I whipped out my Freestyle Libre scanner and waved it over my right arm. Through my coat and t-shirt it scanned my blood glucose level and displayed it on the screen: 3.2 mmol/L and a slow decline arrow.

bgs are going down
Getting into trouble...

Thoughts started tumbling through my head...

"Ok that's not good, but it's not disastrous."
"It always reads lower than my normal meter."
"But it's going down and my hypo senses are tingling."

We carry on walking and I ask my wife, "How far do you think we are from the hotel?". We both agreed it wasn't much further. We carry on walking.

I scan again: 2.3 mmol/L and an arrow going towards the floor.

Going nowhere!
Bother! I'm feeling hot and despite the Libre always reading lower than my usual meter this is now definitely hypo territory. I open up my "bag of life" and take out a tube of Glucotabs. Popping them in my mouth two at a time my wife asks "Shall we just stop at this bridge until you're feeling better?"

I look around.

There's a small group of young adults standing on the bridge, they're drinking bottles of wine; chatting; laughing; enjoying themselves. A few other solitary figures are walking, heads down, no doubt rushing to their destination hoping to be back in the warmth.

I'm boiling, physically sweating beneath my coat, hypo! All these people make me feel unsafe, yet none of them know about the condition I find myself in. I doubt any of them have even noticed me.

"No, we're nearly at the hotel. I'll be fine, I'm gluco-tabbed up." I hear myself reply.

We stumble on. No. I... stumble... on...
I scan again... LO.
This walking is getting harder!

My wife chirps up again, clearly concerned: "Why don't we just sit here at this table?"

We're near the hotel now, restaurants and bars had appeared on the street we were walking on. I looked at the ever decreasing amount of glucotabs in the tube and the people around me. Lots of people around me. It maybe a brighter and busier street... but all these people... I don't want them around me whilst I'm like this!

"No, the hotel is only a few metres away, let's carry on."

Each step felt harder than the last one but, finally we're outside the hotel.

Whenever we're away we scout out the nearby area for any suitable shops that might sell "approved" hypo treatments. It's an unspoken rule. We both do it, acknowledge it, but never openly say "there's an emergency hypo supply shop". The night before we'd both identified what seemed to be a large-ish late night newsagents with lots of drinks chillers.

My wife decided she would go and find some appropriate carbs whilst I went back to the room.

"What's our room number again?"
"4123."

I repeat this over and over in my head as I enter the hotel. Four - One - Two - Three - Four - One - Two - Three - Four - One - ...

I wipe my forehead with my hand as I approach the lift. It glistens in the light with its new coating of sweat.

I finally reach our room and enter.
Safety!

Shrugging off my coat my arms reveal that they too are glistening with sweat.

I scan again.
Still LO.

bgs in Berlin
A packet of crisps! I take them, lie on the bed and devour them.
What else? Poppets! There are poppets in my luggage bag... not anymore, demolished!

... and then? ...then I fall asleep, waking when my wife arrives with "goodies". The newsagent turned out to be selling alcohol! Instead she returned with a muffin from a nearby coffee shop. None of this is exactly fast acting carbs, but I ate that too! ...and then back to sleep.

I wake to her scanning the Freestyle Libre sensor on my arm, clearly worried. Thankfully it was a good number. I was just shattered from the whole experience.

So now I reflect. This is the first hypo were I've felt vulnerable. Why?

I think the answer is two-fold:

  1. Previously all my hypos have either been when I've been on my own, in the company of my wife or at work (when usually no one notices and in any case I'm surrounded by people I know). This time I was in a public space.

  2. Did I carry enough hypo treatment?

    What if I hadn't made it back to the "safety" of my hotel room?

    What if I'd eaten all the glucotabs in my bag of life, stayed on the street and my numbers hadn't come up? It wasn't like there was a shop or bar nearby that could have solved my problem. My wife would need to leave me on the street and go in search of carbs... and then what?
It's a rare event but it's left a lasting impression. Diabetes has made me vulnerable and I've seen first hand how that impacts those closest to me. It's a hard lesson to learn.

What I thought was a good enough safety net might not be... hypo treatments aren't "just in case" items, they are vital items and one tube of glucotabs might not always be enough.

Sunday, 12 October 2014

A year of #OurD

Our Diabetes
How quickly a year passes!

On Tuesday 15th October 2013 Our Diabetes held it's first ever tweet chat. The subject? Community Matters! and it asked six questions:

  • What does the #doc give you that appointments don’t?
  • Does the #doc help you get the best out of your appointments? How?

  • Is there anything the #doc doesn't do now that you’d like it to do?
  • Is there anything you’d like to see on the OurD website?

  • How do/should we get the message out to those that haven’t found the #doc?
  • How can we engage our HCPs in promoting the benefits of the online community?

I don't mind telling you, on that first night, I was nervous! Yet over the course of the chat a total of 67 people got involved despite the football and Great British Bake Off semi-final on television and the Monster Manor diabetes application launching on the same evening. You can read the summary of that first chat here.

Personally I find it a little bit sad that those last two questions still ring in my ears today and maybe we could all do that little bit more to make people aware of the #doc but, as the saying goes, "Rome wasn't built in a day" and if it weren't for all my other commitments perhaps some more of the things people want could be achieved too.... I feel there's a New Years Resolution to be made from all that!

Maybe it would also be interesting, to have another #ourD chat, asking those six questions again and see how people respond a second time around?

In the beginning


When Our Diabetes was born I had no idea if it would be what people wanted. I had lots of doubts. Would people want to host their own chats? Would there be enough questions to last more than a few weeks? Would people find the support they needed? ...and many more too! But Laura (@ninjabetic1) convinced me that I should at least give it a try and let the community decide.

Now, one year on, I can look back and laugh at all those worries. Now I look back and feel honoured to be part of a community that looks after and supports each other; a community that reaches out and says those magical words "Me too!"; a community that shares information freely and helps improve the care that everyone receives.

So many hosts have come forward:


  • PWDs: @Jules1315, @T1Buta, @Titchylou88, @Diathlete, @ninjabetic1, @StorryT_Jewels, @xClaraBellax, @Endo_Gremlin, @vickisnotebook, @kat0302, @betabetic, @sueegreg, @Oggy2203, @VixRz and myself
  • Parents: @Colonelblighty
  • HCPs: @WeNurses, @Jade_SmithGPPA, @Parthaskar and @RNeilABlack
  • Researchers: @DomFurniss
  • Organisations: @HedgiePDiabetes, @QISMETorguk and @ABCDiab
  • Charities: @JDRFUK and @DiabetesUK
  • MPs: @JReedMP and @AdrianSandersMP


There have also been many questions asked by individuals during the #JustOneQuestions chats and of course there has been all the people that have taken part in the chats themselves.

I'm also grateful to all those that have given up their time to do the admin work that allows the chats to run so smoothly each week, people like Laura, Kate, Vicki and Mark. Our Diabetes are always looking for more people to get involved in this side of running the community, so if you fancy getting involved use the contact page on the Our Diabetes website. Equally, you can use the contact page to let Our Diabetes know you'd like to host a chat... if you aren't sure there are plenty of previous hosts that will tell you what a great experience it is!

In short, so, so many people to thank!

As a community we have:

In the end this all comes down to you.

You have been involved in making the Our Diabetes community a success and this blog post is my inadequate way of saying thank you to every single one of you.

Be proud of the community you are a part of, all the contributions you have made and know you are making a difference.

Thank you!

Monday, 18 August 2014

There's something deeply personal about my numbers

Have you ever been testing your bgs and someone has asked "What's your number?", maybe they have even tried to peer over and look at the meter reading to see the number for themselves?
I know they are asking for all the right reasons - they care about my health and well being.
They've taken an interest in my condition and want to be supportive ...yet, it can sometimes feel deeply intrusive.

I go to cover up the meter with my hand so I can see the number first. I want to be the one that knows (and be comfortable in sharing) that number with someone else. After I've seen the number I might reply with the exact number; I might even show the number displayed on my meter (if it's really good); give an "about" number if it's kind of "ok"; or declare "it's rubbish" if, well, it's rubbish - that usually garners a response to tease the exact number out of me - making me feel more uncomfortable in the process.

You can tell me there is no such thing as a good or bad number (and that's true!) but, the reality of the situation is, I can't help judging my performance on every bg reading.

Maybe it's me? Maybe I'm too self-critical? Maybe it's because I feel others will judge me on my numbers? It's a complex feeling, but mostly I think it's about being in control. My numbers, my responsibility, my business.

When I go to clinic they download the readings from my meter and the consultant looks over them with me. I can find it to be the most stressful part of the consultation. They focus on all the high and low readings, trying to find out what's going on as I frantically flick through my notebook to provide excuses, justifications... explanations. They rarely acknowledge my "in target" readings and why would they? They don't need to focus on those number, they're ok.

They ask about the highs and lows because that's where they can add most value. They're looking to help improve my self-management and give me the tools and knowledge I need to do that. Yet (as you can see from my language) it can sometimes feel like an assessment I'm failing in, with little recognition given for the hard work I put in day and night to get and maintain control. Most people don't go to work to do a bad job and so it is with diabetes management, yet sometimes it would be nice to be have a little bit recognition for the good work done - it would be a powerful motivator.

A page from my notebook


My notebooks record everything I've eaten each day since receiving my type 1 diagnosis, every blood test, every meal and carbohydrate count, every insulin dose, everything unusual I did on a particular day that could justify an unusual reading, every thought process. It is deeply personal to me. I have even created my own shorthand, my own code, to explain certain actions and activities I do. It is my most personal of diaries and yet those around me can thoughtlessly treat it like an open book:

"Let's see what your numbers have been like today" as they reach out to take the latest notebook from the "bag of life" I carry around with me.

Don't get me wrong, I can and do share this information at times - but I'm the one in control of sharing that data. People get to see it when I'm comfortable with sharing it.

People are usually surprised when they see I record all my data in paper format. They are confused about why I don't use a mobile phone application to store all the information, after all I'm a technology geek and the apps are "free". I usually joke that pen and paper doesn't require a battery to operate, but the real reason is much deeper than that. Let me explain...

At diagnosis I immediately looked for diabetes applications for my mobile. I found a huge collection of diabetes apps: most of them were absolute rubbish (either making it difficult and time consuming to enter data or impossible to extract or edit the data once entered, some clearly had absolutely no input from people with diabetes and completely missed the basic requirements someone with diabetes would need); a few showed promise with interesting ways to speed up data entry and some I ended up using for quite some time. I never found an app that was perfect for me and eventually I even got involved in helping a company create a diabetes app which helped to give me insight to the development process and some of the business models used when creating applications.

Many applications now like to store your data in "the cloud" and this can bring great benefits to those using these types applications as you can enter and view your data on a number of different devices. With the data held centrally it is available anywhere and everywhere and usually means you can share your data with other people (should you wish) more easily too.
It also allows the company providing the "free" application with more ways to make money. This isn't necessarily a bad thing. The cost of developing an application, marketing it, providing servers in the cloud to store and process your data etc all adds up and they need to find ways to recoup those costs (both development and ongoing storage and processing) as well as a profit. Until recently most applications relied on either in-application advertising; asking you to sign up with an email address to gain access to further features; or getting you to pay for additional features. In all these scenarios the amount of personal information given in exchange for using the application was minimal and there was a choice of what information you provided, but times change and now things are different.

Many of these "free" applications hold a lot more information about you, they know your name, your email address, your age, weight, what insulins you use, your account may even be linked to a facebook or twitter account profile providing even more demographic profiling and with every entry you make they build up a profile:

What are you eating/drinking? How many carbs? How much insulin did you take? What was your bg reading? What was your location? (Yes many apps now use the GPS information from your phone to locate where the entry is made), some even ask you to take photographs of the food you are eating etc.

This is all valuable information and can be sold on to other companies with an interest in it.
They can gain commission by identifying appropriate people to sign up to clinical studies & trials, create more targeted advertising etc. From the GPS information they know where you live, where you work, what restaurants you prefer. From the images supplied they know what food you like, what your favourite food brands are - a marketers dream!

Apple aren't getting into the health market just because it is a good thing to do for people, they are doing it because the market is worth millions. When they recently announced their intention to move into the health tracking market one of the example applications shown was a blood glucose monitoring app. Embarrassingly for them they got the unit of measurement wrong (which is an issue I might come back to in another blog).

Google also sees the value of being a player in this market and have partnered up with a pharmaceutical firm to create the Google contact lens that monitors bgs and well as providing a platform for health apps similar to Apple. Google is in the business of advertising, the health market is just another opportunity for them to sell health data and market health products.

So our data is valuable.

When you start looking deeper into companies polices you start to see that many seem to make great efforts to hide the fact that they are planning to use and sell your data and I wonder why. After all Google makes no secret of the fact they use programs to read your emails to create more targeted advertisements - you have a choice: use the "free" Gmail service and accept this advertising process or use another mail service. The key here is that Google tells you explicitly what you are signing up for. It's the same with Facebook (although they have and continue to have "run ins" with privacy rights groups) options are provided to allow you to opt out of certain advertising and data selling processes.

I've talked about care.data in the past - I'm not a fan of it in it's current form and have opt-ed out until I see sensible safeguards in place. It got in to a lot of problems because of a lack of clarity on how data would be used and who could see it. Ben Goldacre has written many articles on this issue. Checks and balances need to be in place to protect peoples privacy and rights. Sensibly the care.data programme has been delayed to try and fix some of these fundamental issues. If the resulting changes are acceptable to me I will opt back in.

So why do diabetes applications (and other mobile health apps for that matter) make it difficult to know how, why and what your personal data is going to be used for? Are they worried we might not use their applications if we knew how widely they want to trade our data?

Let's take a look at some examples: Dario and DiabetesPA. I could have picked any diabetes mobile app company, they are in no way special when it comes to how they treat your data other than they do provide some form of privacy statement - many don't!

Dario

Dario (or LabStyle Innovations Corp.) is a company traded on the OTC QBunderstock exchange (OTCQ:BDRIO) with a market capitalisation of around $4.4million. On their investor website they have an investors presentation which on page 20 or 26 explains how they plan to monetise their offering.

Dario sees several potential revenue streams

The third being data monetisation through clinical studies, trial recruitment and partnerships.

Now, pop over to the Dario website (and/or download the application to your phone) and try and find out, as a user of the application, what you are signing up to.

Not so easy? Well their privacy policy can be found here (right at the bottom of the web page) and section 5 covers the main point "We may disclose your Personal Information..." and section 2.3 of the terms of use (within the app) states: "You understand and agree that the personal data you enter into your account may be used by us or by any third party for research, development, commercialization and/or academic purposes..."

Interestingly you can email Dario to opt-out of emails being sent to you, but there is no option to opt out of your data being used for commercialisation.

Obviously everyone reads the privacy policies and terms of use in great detail before signing up to use an app, right?

What's "great" about these privacy policies is that they can change them whenever they want, to suit their purposes, without the need to tell you... Section 9:

"This Privacy Policy is subject to revisions from time to time, upon our sole discretion and without prior notice. [...] All such changes will apply to previously collected information. Therefore, please make sure you read this Privacy Policy regularly."

How many people using the application will repeatedly go back and check if any policy changes have been implemented?

DiabetesPA

DiabetesPA is a mobile phone application created by Diabetes Digital Media Limited, the people behind the website diabetes.co.uk. Initially the website didn't provide any privacy statement (the link went nowhere). After pointing this out they fixed the link and after reading it I tweeted them some questions. They got in touch with me by email to ask for more details about my questions and I responded to their email on the 29th June 2014 with the following text:
Thank you for the email.

My main concerns are around the terms used in the privacy statement. They seem to be very loose and open to interpretation which I feel at times seem contradictory.

For example, Section 5 makes it very clear that information captured via the app will only be viewed by your "medical team" and not passed on to anyone else except for complying with the law/regulators and when people choose to take part in a clinical trial:

You should be aware that information captured via our App may be viewed by our medical team. None of this information will be passed to any other person except for:

   + disclosure for the prevention of crime;
   + in accordance with the law;
   + compliance with the direction of any regulatory or governing bodies;
   + for the purposes of preventing injury or harm to you as the data subject; or
   + when registering to take part in clinical trials, to the responsible clinical research organisation(s).

However, Section 6.2, 7.1 and 7.2 suggest otherwise:

In 6.2 it is not clear what data will be used, but clearly in the case of your company it would be more than the medical team using it. If third parties are using the data is that not against section 5?

6.2. We may also use your data, or permit selected third parties to use your data, to provide you with information about goods and services which may be of interest to you and we or they may contact you about these by post, email or telephone. If you are an existing customer, we will contact you by post or email with information about goods and services which may be of interest to you. If you are a new customer, and where we permit selected third parties to use your data, we (or they) will contact you by post or email, only if you have consented to this.

Again there is no clarity in section 7.1 as to what information is being disclosed, but the entities listed are not the your companies medical team.

7.1. We may disclose your information to:

   + advertisers and advertising networks that require the data to select and serve relevant adverts to you and others;
   + analytics and search engine providers that assist us in the improvement and optimisation of our Website;
   + pharmaceutical research organisations.
   + Please note, we do not disclose information about identifiable individuals to such third parties, but we may provide them with aggregate information about our users.

...and in section 7.2 (and I appreciate this is a boiler plate statement) it does suggest that information could be shared with others outside of the medical team.

7.2. We may disclose your personal information to third parties:

   + in the event that we sell or buy any business or assets, in which case we may disclose your personal data to the prospective seller or buyer of such business or assets;

There is also no clarity as to the reasons the medical team may be required to look at data.

I appreciate that the data input via the app has value and I don't have a problem with you mining this information and even selling the information on to third parties such as pharma companies BUT I want to understand what I am agreeing to in order to use a "free" app.

I also have some concerns over the possibility of data being taken outside of the EEA, something your ICO registrations says isn't the case.

4.1.    The data that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area ("EEA"). It may also be processed by staff operating outside the EEA who work for us or for one of our suppliers. By submitting your personal data, you agree to this transfer, storing or processing. We will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this Privacy Policy.

ICO registration:

Transfers

It may sometimes be necessary to transfer personal information overseas. When this is needed information is only shared within the European Economic Area (EEA). Any transfers made will be in full compliance with all aspects of the data protection act.

Again I suspect this is a boilerplate statement yet on Twitter the suggestion was that taking the data outside of the EEA was a theoretical possibility and it would be easier to change the ICO entry than the privacy statement - something I find very hard to believe given you can change the privacy statement without going to a 3rd party.

I hope that gives an idea of the concerns I have.

After several chasers I finally received a response on the 12th August saying they would upload changes to their policy that very day. They said they'd make some amendments to the privacy statement and in particular add some additional words to section 5 (changes shown in bold here):
You should be aware that medical information captured via our App may be viewed by our medical team in order to provide you with the MyLifeStyle services. None of this information will be passed to any other person except for:

• disclosure for the prevention of crime;
• in accordance with the law;
• compliance with the direction of any regulatory or governing bodies;
• for the purposes of preventing injury or harm to you as the data subject; or
• when registering to take part in clinical trials, to the responsible clinical research organisation(s). ; or
• otherwise in accordance with this Privacy Policy.

As of today (18th August 2014) those changes haven't been implemented.

You can read the full privacy statement on their website: DiabetesPA (Diabetes Digital Media Limited / www.diabetespa.com) privacy statement

The change would (if added) at least make it more explicit as to what happens to your data but ideally I would like to see more. I shared my thoughts with the DiabetesPA team specifically explaining how I'd like references to data use to be split into three different categories:

I guess for me data broadly falls into three categories:

1. Usage data - IP, browser, URLs etc (data described in Section 2 of your privacy policy)
2. Personal data - name, address, email, facebook, twitter, phone etc
3. Sensitive data - bg results, insulin requirements, mood etc

I believe a gold standard policy would identify which type of data is being disclosed to whom.

ie. In Section 7.1 I suspect the first two bullet points relate to "Usage data" in the definition above, but the third one relating to Phara companies would be "Sensitive data" that has been anonymised and aggregated for reporting purposes.

Although they agreed that people would start to think about their data more and more they clearly aren't going to implement a clear and transparent policy unless users stop using the app and make them aware that reason is due to a lack of clarity on their data usage.

In Summary


So, if I'm not happy with the people around me (that have a true interest in my health and well being) riffling through my notebooks, why would I not only let a company do this for themselves but also allow them sell all my notebook entries to others?

...and now you know the real reason why I use pen and paper to record information and not a mobile phone application. Until companies have true transparency around how they use my data and provide opt-outs (or ideally opt-ins) to it's use I'm going to keep my diary under my control.

It all comes down to who really owns the data. My advice is if the application is "free" you shouldn't assume the data you input is yours until you have proof otherwise. If it is a paid-for application, sadly it seems (in the vast majority of case) the same is true!

If you aren't sure what a particular company policy is, ask them. If it's not clear, ask them to clarify (in writing) and, if you don't like the responses you get use a different application with an acceptable policy or like me, use pen & paper to control how and when the data is used for yourself.

Additional Reading

Tuesday, 5 August 2014

Why measure? Is it waste or non-compliance?

Two topics in one blog post? Well, they are kind of related and I'm in a cost and time saving mood...

Why measure?

Recently I've (unfortunately) been going to the hospital and my new GP practice a lot more than normal. Sometimes I've had hospital visits twice in one week and although the observation I'm about to make has struck me as odd before, these regular visits have made me question what is going on even more.

Every time I've had an out-patient visit something happens and yet, nothing happens.

What happens? I get weighed and my height is measured.

Now I'm being a bit harsh when I say nothing happens because in reality the results get recorded on the system but, after that, nothing happens.

If I were to visit the hospital today, my weight and height would be recorded. If I visited tomorrow, I would (once again) be weighed and my height measured.
No one stops and thinks "Oh, this was recorded yesterday, no need to do it today". It seems to "just be the procedure". It seems a waste of time and effort.

What's worse is that no one seems to look at these measurements or, if they do, they see no reason to discuss them with me - yet they should. My weight has increased by over 50% in the last year and my BMI wasn't in the green zone to start with!

So why is this procedure blindly followed every time I visit hospital or visit my GP practice?
If the data isn't used, why collect it in the first place?
If I refuse to be weighed or have my height measured I suspect I'd be deemed a non-compliant patient, which nicely leads on to part two of this blog post...

Is it waste or non-compliance?

I have a new GP!

I have no idea who they are. I don't know their name as it could be any one of the GPs at the practice I've registered at, but I'm sure the system knows who I've been nominally assigned to.
If it's anything like the last two practices I've been registered with, I suspect I will never see them. Instead I'm always seen by the practice nurse, because I'm "special"... I have type one diabetes... which is fine my me - being seen by the practice nurse, not so much the diabetes bit!

When I initially registered I was told that they no longer do "new patient assessments" - fantastic. I always found them to be annoying time wasting activities imposed on me so I'd be allowed to order a repeat prescription. I asked how my repeats would be setup and (unfortunately), whilst casting their eye over my last repeat prescription, they back tracked a bit and said "well the GP might want to see you before setting all this up".

I realised, the following week, that I hadn't asked about sharps bins. Unlike my previous two addresses, were the council both took away and replaced sharps bins, my current council only takes sharps bins away.
I went back to ask how I could get a replacement sharps bin. Apparently I need a sharps bin to be added to my prescription (which to this day still hasn't been done). The council will come and collect my bins on the 8th so it might be an interesting challenge to store my medical waste soon!
Anyway, whilst this was being discussed I was told that I needed to be booked in to see the practice nurse to discuss my diabetes and get my repeats setup etc... sounds like a new patient assessment to me! As a "compliant" patient I set up the appointment, after all, if I didn't get my repeat of insulin I'd be putting myself at risk of dying - no small incentive.

Unfortunately the practice nurse was ill on the day I was meant to see her and the GP practice rang to rearrange for the following week.

The day arrived. I go with my urine sample, all of my notes and a list of issues and questions I'd like to discuss - I always go prepared.

Some of the numerous forms I filled in to register at my current GP practice.
Including key questions: Do I smoke? Do I drink? Do I exercise?
I get weighed; they measure my height; they do my blood pressure; ask if I drink?; do I smoke?
...and a couple of surprise statements/questions: You have type two diabetes. What other conditions do you have?

At registration I'd provided a printout from my previous GP listing everything about me. I'd also filled in numerous forms to register with practice too (one of which asked if I smoked, how much I drank and the amount of exercise I do). I also knew that (because they'd taken so long registering me) my previous GP had managed to send through everything they had about me. Heck I even knew (via the EMIS patient portal) that my repeats had been setup and so this meeting was a complete waste of my time - I didn't need to be here to get my repeats setup as I'd previously been told! So why was I being asked all this stuff - again?

The NHS love to record when and how much I drink & smoke.
Just like weight and height - it's an obsession.

Even when I was admitted to hospital on the verge of coma I was asked! Yes, I know, there is good reason for this... but I must always disappoint them when they get the same response:

"only for celebrations and no, never"

How boring! ...but every time it's as though they're asking these questions for the first time. No one has ever said "We've recorded on the system that you don't smoke, is that still the case?". Why bother recording the information if it's never going to be looked at again?

Then the question (spoken as a fact), that always annoys me, was made:

"You have type two diabetes."

I interject, "No I don't. I was mis-diagnosed with type two diabetes. I actually have type one."

"Oh. What other conditions do you have?"

I mention Raynauds.

"How do you spell that?"

The system shows three different options for Raynauds and I point out they all describe the same condition. She selects one and then asks me a question about it that makes no sense what-so-ever. She decides not to explain, presumably because she doesn't know what the question means either.

I sit there wondering why I'm being asked all this when they have all of my medical notes already. Maybe they're doing this to check the information is right? Well if I didn't have type one diabetes I wouldn't be here, so it can't be that... besides, she's typing this stuff into the system whilst I'm here. Why hasn't it all been imported electronically already?

...and then it is back to discussing my diabetes...

"Have you had a retinal screening this year?"
"Yes, 8th of May" (I know this because I blogged about it: Eyes Wide Open)
"Was it ok?"
"Yup, no problems."
"Ok, we'll get you added to the system to have one later then."

Then came the shocker.

"We need to set you up with a couple more appointments. One to have a fasting blood test and the other to see the diabetes nurse at the practice."

What started as not requiring any appointments has turned into three!

So I'm booked in next week for blood tests (let's hope I don't go hypo before that one!) and the following month to see the diabetes nurse to discuss whatever it is she wants to discuss - assuming I go. At some point someone needs to re-test my potassium levels... I seem to be the only one concerned about this, hopefully I can convince them to do that next week otherwise I'll cancel the appointment with the nurse because I don't see any value to it.

As the practice nurse starts to send me on my way I say I have a few concerns and questions I'd like to ask. It turns out she can't help with any of them, only the diabetes nurse can deal with these when I see her next month. I guess I'll just plod on by myself then.

So I leave in the knowledge that my time has been wasted, but I'm sure they found it useful as they've managed to collect some QOF points along the way.

Eye Screening Invitation

Then to my surprise I receive an invitation in the post to book a retinal screening! It's not even been 3 months since my last one and they know it!

It would seem the cost of providing this service is about £25, but the cost and inconvenience to me is a lot more. Every location available is a car journey away, but once they've put the drops in my eyes I won't be able to drive for up to 6 hours. That means I either have to ask my wife to take time off work (as well as myself) in order to take me or a rather expensive taxi ride each way.

So I have a choice. Either:

  • Waste NHS time and money as well as my own (and mess my employer about by taking time off work) and have another retinal screening, despite the fact my screening in May didn't even have signs of background retinopathy, or
  • refuse to go on the basis that it is less than three months since my last one and then I have a GP practice thinking I am an awkward, non-compliant patient.
I guess I'm going to be a non-compliant patient, but why do I feel bad about saving the NHS time and money? Why do I feel like I'm being used rather than getting care?

Unfortuntely I have very little choice over who I can register with, I just hope they don't hold me to ransom like my previous GP when it comes to ordering a repeat prescription.

Thursday, 17 July 2014

Demons in your head?

I was in McDonalds recently.

To be honest I've been there quite a lot of late, usually around 11:00pm after completing some DIY at the house I've bought. I pass a 24hr McDonalds on my journey back to the rented accommodation I'm currently living in and just as my Levemir injection alarm goes off I'm usually tucking into a McFlurry treat!

The other night whilst eating a delightful Dairy Milk McFlurry, a song came on and I asked my phone to tell me what I was listening to... why? because I'd heard "the c word" in the lyrics.

For the avoidance of doubt, "the c word" is... carbohydrates!

...and it turned out the song was Vertigo by Rumer.



The song isn't the style of music I'd normally listen to, but ever since my diabetes diagnosis my ears have been able to tune into any conversation that mentions the c word with laser like precision. Although the song isn't about diabetes (far from it!), with a few tweaks here and there it certainly could be...
The concept of carbohydrates at 4am in the morning obviously has a slightly different meaning in my version of the song and I'll admit to playing it on repeat at the moment because (in my version) the lyrics are ALL about diabetes.

The challenge of diabetes isn't always obvious to those around us, sometimes there can be battles going on inside our heads and dealing with those "demons" can take its toll on our emotional, mental and physical well-being. Yet, bravely(?), we continue to tell those around us that we are fine. Trying to fool everyone (including ourselves) that everything is ok and that we are "managing" to deal with the condition.

Why do we do it? Are we too hung up with "not being a burden"? Do we decide help won't be available without really knowing and therefore decide not to ask? Maybe we feel ashamed of the need to ask?

There certainly isn't any shame in asking for assistance to overcome the "demons" and there should be no barriers in obtaining the help needed. So why do we lie to ourselves and others?

Imagine informing someone that they'd been signed up to a full time job which they cannot quit, that it came with no holidays for the rest of their lives, no weekends off, no opportunity to have a day off sick and indeed if they were unwell they would need to put in a double shift. It wouldn't take long before they were screaming for help. That's how cruel the employer Diabetes is - and in many ways it can be much, much worse!

So why not go into battle with the demons in your head (and help yourself and those around you) by sharing them with your HCP? After all, a problem shared might not be a problem halved... it might be a problem resolved.

Appropriate lyrics?

Pass me the bottle, pour me the wine.
I might be face down on the table, but I assure you I'm doing just fine.
Give me a cigarette, you heard what I said,
'cause I'm going into battle with the demons in my head.

'Cause I've seen trouble, I've seen more than my share.
I said I've seen trouble and I don't care any more.
No, I don't care any more.

You say I'm outspoken, that I'm loud, that I'm obtuse.
While I'm here all screwed up, baby, tell me what's your excuse?
Gimme carbohydrates, at four in the morning.
Gimme carbohydrates, 'cause I don't care any more.
No, I don't care any more.

Tuesday, 1 July 2014

Dear M&S...

You used to be a leader in sharing nutritional information with your customers. Back in 2005 you had a traffic light system on your food to help customers make informed choices. Tesco and Morrisons only agreed to do this at the end of 2012!

You were a leading light.

You used to provide information about the products you sold in Cafe Revive on your website enabling people, such as myself, the opportunity to plan how much insulin I would need to inject in order to eat at your establishment.

Unlike others (such as Costa, Starbucks, BB Coffee and Muffins, Caffe Nero etc), you took the retrograde step earlier this year to remove this information from your website. Eating in your cafe now has an element of risk to my (and others) health.

I don't have an explanation as to why you made this retrograde decision (even after spending 15 minutes on the phone to your customer care team). All I've been told is:
  • The information is no longer provided on your website.
  • You have no plans to provide this information on your website in the future.
  • If I want to know the carbohydrate value of any product in your cafe I should request this information from your staff at the time of purchase.
Well last Saturday I did exactly that - in your Wellingborough store. I asked for the carbohydrate content of a piece of cake. The staff seemed quite put out with me asking and pointed to the plastic noteholder stating the product and calorie content. I was told very abruptly that everything I needed to know was there.

I pointed out this only provided me the calorie content of the cake and not the carbohydrate content. The member of staff stormed off to ask a colleague and after much discussion she came back and told me the amount of calories as though this was the carbohydrate content. If I hadn't done a mental check on this number I would have injected a dangerous amount of insulin that would have potentially ended my life.

I asked again for the carbohydrate content.

A rather large queue was starting to form and customers (quite rightly) where getting frustrated and annoyed that they weren't being served. I on the other hand felt like I was being a "problem" both for the other customers and the staff.

Eventually they found an A4 ringbinder which contained a printed sheet for each product. There didn't seem to be any logical order to how these sheets were stored and the staff flicked through each page in turn until they found the product I was interested in and provided me with the carbohydrate information. It seemed much larger than I was expecting (but nowhere near the calorie value!) but given the size of the queue that had formed I wasn't going to question it. I was embarassed enough!

I purchased my food and drink and took a seat.

At this point I did my calculations in order to determine the amount of insulin I required and then I had a panic. What if this number was wrong? It seemed too high for such a small slice of cake. Other cakes I had eaten in Costa (for example) were much smaller. Had they read the right value?

I couldn't inject without seeing this information for myself and so with a renewed resolve I went back to the counter and asked to see it. Once again I got stares from other customers as (I imagine) they were wondering "who is this person that has just jumped the queue?" and the staff didn't seem particularly happy with me interupting them again to ask the same question. Eventually they found the correct folder and flicked through each page (again) until they found the product and handed me the folder.

It turns out they had given me the correct number from the page. I thanked them and sat down. I decided I couldn't inject the amount it stated, it "seemed" wrong. I reduced the amount I injected by a couple of units on the basis it would be easier to correct with an additional shot of insulin later if the number was incorrect than to deal with a potential insulin overdose.

I don't know if the slice of cake I consumed on the day was smaller than the suggested size in the manual; or if the value on the page wasn't correct; or if diabetes just played one of those nasty tricks on me due to the stress of the situation, but I ended up hypo later that day and I had to eat some fast acting carbohydrates to get my blood glucose levels back in range. I suspect it was the stress, but with diabetes you can never be totally sure.

In the end, what should have been a nice "treat" at the weekend turned into a stressful, unhappy experience that ultimately ended up with me in a hypoglycemic state. Not an experience I wish to repeat and so until nutritional information is published on your website (like it used to be), unfortunately I will not be having a "treat" at any of your cafes again. I would much prefer to go somewhere that lets me be safe and in control of my health needs - as I have mentioned nearly all of the high street chains offer me this comfort.

Angry at what had happened, I raised this issue with you on Twitter and you told me to give you a call. I was hoping that when I rang you'd say "Sorry, we made a mistake, this information will be back on our website soon and when it is we will let you know" instead you made it very clear that there were no plans to give this information to customers on the website and despite me recounting my experience, the advice was still to ask in store - to put my life in the hands of poorly trained staff.

You said you'd contact the Wellingborough store to ensure they were aware of the issue, but you are a national chain... what if the same experience I had happens in other stores? What if your staff tells a customer the calorie content rather than the carbohydrate value and your customer accepts this without question? You are putting peoples lives at risk! If I hadn't had the sense to question the original answer I would have injected around ten times the amount of insulin required.

Given you send this nutritional information out to every store that has a Cafe Revive in it, surely it is not beyond the realms of your ability to share this information online with your customers? You used to, why did the policy change? Is this a lot to ask of a multi-national company? You already have the information so please share it for everyone's benefit.

Instead of being a laggard, I want you to become that leading light again. Show the UK how you care for your customers needs and how you understand the value customers place on nutritional information.

With a very heavy heart,
David

Help me to change the mind of M&S


If you agree with me that Marks and Spencer should start publishing on it's website (again) the nutritional information of the food it sells in Cafe Revive, please let them know.
It only takes a few minutes to make your voice heard.

You can:
  • Contact them via their website
  • Call their customer services line on 0333 014 8555 and select option 4
  • Write to them at:

    Marks & Spencer
    Chester Business Park
    Wrexham Road
    Chester
    CH4 9GA
  • and/or tweet them @marksandspencer (+M&S)
Please help Marks and Spencer become a leading light again and make it safer for customers to eat in Cafe Revive.

Thank you.

Sunday, 22 June 2014

Diabetes in Parliament

How the #ParliChat tweetchat came about


Earlier this year I was asked if I would be involved with a small (but growing!) group of people talking with the Parliament Outreach team about the use of social media. Since then I have attended a number of #ParliTeaCamp meetings at Portcullis House discussing a wide range of topics and, if you follow me on Twitter, I'm sure you would have seen a few tweets from me whilst attending these meetings!
These meetings have been extremely interesting and rewarding. By getting involved I've personally learnt a lot about Parliament, social media and how communities work and grow and I hope my own contributions have been useful to others too. Through this involvement I have also had the opportunity to meet some amazing people who do amazing work!

So, when the Parliament Outreach team asked if I'd be interested in Our Diabetes doing the a live tweetchat, using the "Melbourne Declaration on Diabetes" debate at Westminster Hall, I jumped at the chance.

What actually happened


Being the first to attempt something like this envitably means you hit a few barriers. We successfully managed to negotiate them with the help of the Outreach team and run the first live #ParliChat tweetchat during the debate.

The initial idea was to tweet directly from within the debating hall but unfortunately security at Parliament put the first roadblock in our way... members of the public aren't (currently) allowed to take electronic devices in the debating chamber!

Hopefully this policy will change in the future. I feel it's a great way to get people involved in (and understand) the workings of Parliament, sharing with a wider community what is being discussed there directly with the people it relates to. When filtered through mainstream media most of what Parliament does seems to gets lost...
...After all, how many people saw anything in the media about this debate? I didn't see anything mentioned and yet around 3.2 million people in the UK would have a direct interest (having either type 1 or type 2) in this debate!

Plan B involved watching the debate via a Parliament TV live stream and this worked for most, but a few people had problems accessing the stream. I'm sure lessons will be learnt from this and any issues identified will be resolved in time for future chats... and I certainly hope future chats take place.

If you missed the debate yourself, it is possible to watch a recording of the proceedings both on the Parliament website and on YouTube. You can also read the transcript (courtesy of Hansard).


In preparation for the Tuesday #ourD tweetchat I thought it would be interesting to take the Hansard transcript and create a word cloud to highlight the most common words used during the debate. I found it very heartening that after the word diabetes the most common word was people - after all this condition is all about people!

The debate as a word cloud - click to enlarge
 

Who got involved in #ParliChat


Given the time of day, I wasn't sure how much engagement we would get during the debate itself, but I was pleasantly surprised to see the number of people joining rise as the debate continued: from diabetes consultants and diabetic specialist nurses to patients with diabetes and parents of those with diabetes; from Cardiff and Vale UHB (who are one of the largest NHS organisations in Wales - a pleasant surprise given health is a devolved power!) to JDRF UK (the largest type 1 diabetes charity in the UK); to diabetes device manufacturers and everything inbetween. We also had Jamie Reed MP (Shadow Health Minister) and Adrain Sanders MP (who moved the debate) engage in the chat.

In total 55 people got involved, creating 315 tweets reaching an estimated audience of nearly 375,000 people and approaching one million impacts on Twitter timelines. A fuller breakdown of these analytics can be found in this pdf document.

What did I take away from the debate?


Overall I came away with a much greater understanding of how many MPs are "blessed" (as Jamie Reed MP put it) by diabetes who have a real passion and commitment to tackling the issues around diabetes as well as how much work goes unnoticed by the public.

I wouldn't consider myself a political animal and I certainly wouldn't want this blog to become one, but I do have to confess I was somewhat disappointed by the response from the government given by Jane Ellison (The Parliamentary Under-Secretary of State for Health) and I felt those in the debating chamber felt this way too as she gave way several times to MPs.

I will finish this blog by listing a few of the points raised that struck a cord with me. I would be interested to know what parts of the debate struck a cord with you by joining me on Tuesday 24th at 8pm BST in the #ourD tweetchat and/or by adding your comments at the bottom of this blog.


1. Statistics were discussed throughout the debate

  • Diabetes caused 5.1 million deaths in 2013 or to put it another way, "every six seconds a person dies from diabetes somewhere in the world".
  • Our annual intake of sugar is 33.7 kg per capita. To put that in perspective, it is equivalent to eating nearly 34 average-sized bags of sugar each year.
  • Up to 80% of type 2 diabetes could be delayed or prevented.
  • In the UK this year, 59,000 people will die unnecessarily from diabetes.


2. Many in the debate asked for a UK wide strategy

Jamie Reed: Diabetes UK [...] endorses the view that there is a clear need for a national action plan. It has identified five key areas that must be included. Those are: improvement in support for self-management; integration of care; improving safety; a focus on children and young people with diabetes; and prevention of type 2 diabetes. I am sure that if the Government introduced a comprehensive action plan built on those five principles, it would receive the support of the entire House.

The Parliamentary Under-Secretary of State for Health (Jane Ellison):
I accept that there is a challenge about the need for a national action plan.
[...] Nevertheless, I currently have no plan for a UK-wide strategy because health is a devolved matter.

Jim Shannon:[...] but we had a UK-wide strategy until 2013—last year—so we have shown that we can work together. All I am asking really is: why we do not initiate a similar plan to what was there before 2013—a 10-year plan that started in 2003—and have the four regions work together? That is exactly what the Melbourne initiative is about, and we could do it because we have done it before.


3. Education was also a strong theme (and one I have strong views on too!)

Jim Shannon: Only one in 10 people who are newly diagnosed with diabetes are offered education on how to manage their condition, despite strong evidence that education is a cost-effective way of giving people the knowledge that they need to manage their condition. On managing diabetes, after someone is diagnosed as diabetic, what help is given to them to ensure that they manage that in a sensible way?

Mr Sanders: The point about education is interesting. According to the National Audit Office, the estimated amount that the NHS could save annually through people better understanding and managing diabetes is £170 million. That is just from improved awareness and education.

Jamie Reed: There is an issue with not just numeracy, but literacy, and there are also issues about social exclusion, which I am sure we are all aware of. We need to put some time and effort into understanding and resolving those issues if we are properly to increase self-management among diabetics.


4. Use of Data

Jamie Reed shared a vision of the future that I'm not sure is a "utopian world", but smarter use of data certainly has it's place. Ownership of data and privacy concerns will be important issues to resolve and a public dialogue needs to begin before this takes place.

Jamie Reed: "... the most important issue in managing my condition is having access to data about it, such as my blood glucose readings and my insulin ratios. We need a framework and a strategy for medical innovation that incorporates diabetes research—from not just a scientific point of view, but a patient’s point of view—in a profound way. How can we become the best country in the world, in terms of medical companies and other pharma-based industries developing new and innovative ways of treating diabetes?
[...]
I look forward to the day when my data can be captured in real time and shared with my GP and my pharmacist, so that I do not have to phone up, text or e-mail to get my insulin prescription. My GP and my pharmacist will have the information and the algorithm, they will know when my prescription needs to be ready and how much I am using, and my doctor will know how I manage my condition. We can hothouse innovation—my office and I are doing an awful lot of work on this—but we need to make that innovation part of not only a national diabetes strategy, but a biotech and medical innovation strategy."


5. Patient Empowerment

Jane Ellison: People cannot be empowered without information.

Jane Ellison: I want to discuss another area in which we can make a difference by empowering patients. Colleagues might be interested to hear about the patient experience of diabetes services survey, part of the national diabetes audit, in which I know there is always great interest in the House—we regularly answer a number of parliamentary questions about it. The survey measures the health care experiences of people with diabetes in England and Wales. It collects information online from people with diabetes by asking questions about their care using a short, validated questionnaire, and it is being tested.

Jane Ellison: Public Health England is developing a tool to drive improvements in diabetes care and iron out variation. It will be launched later this year, and although I am not able to give much detail now, I am sure that my hon. Friend the Member for Torbay will be interested when it is launched. It will provide a clear picture of how diabetes care and outcomes vary across the country and among practices, which will support decisions on how to make improvements.

Having had sight of this tool ahead of its launch I can only agree with Mr Sanders comment:
One of the challenges of a bottom-up approach, as has been highlighted in this debate, is getting people to use the information that is out there to drive up standards. People need to be aware of where the information is and how they can best use it, which is a challenge not only for diabetes but across the health service.
The tool visualises data that has already been published for some time. It is all very well showing patients how good or bad their care is, but if you don't tell those same people how they can effect change to improve their care then it doesn't empower patients at all!

Jane Ellison: That body [NHS England] is implementing what it calls a customer service platform to allow patients with diabetes to self-manage, through booking their own appointments, managing their prescriptions, monitoring the care they have received and being able to view their personal health records.

Clearly my view of self-management is very different to that of the Parliamentary Under-Secretary of State for Health! Being able to book appointments and order repeat prescriptions are useful tools, being able to view my health record would be wonderful - in theory all of these things COULD be delivered now (and some areas do provide all of these tools) but even if they were universally available it's nowhere near what I would consider required for self management!


6 Working together

Jamie Reed: It would, therefore, be a tremendous gesture—not for its own sake, but from the point of view of those living with this condition—if Members who understand type 1 and type 2 diabetes were allowed to contribute their knowledge and experience to the production of a better plan that would better suit those with this condition.

Jane Ellison: ...I encourage Members to tell us of effective local initiatives, so that we can spread the word.


7. The Melbourne Declaration

Since the declaration was signed, over 100 parliamentarians have signed up as members and many more have declared themselves supporters. Two newsletters have been published and are hosted on the International Diabetes Federation website, a Twitter account is now active.

Following the declaration and events in Parliaments around the world, the ExPAND Policy Toolkit for Diabetes has gone live and will greatly assist the aims of the declaration. It is a practical guide to help diabetes advocates to challenge national Governments and to raise the profile of diabetes.