Thank you from Bcon.CC (Qr Codes to aid first responders)

[David Rankin]

Hi fellow geeks who love the NHS,

I just wanted to say thanks to those involved in the Cardiff event, and especially those who encouraged me to present my idea at the NHS Hack Day. Can't really fit everyone in a tweet and don't want to name drop too much, but those posting in the group https://groups.google.com/forum/#!topic/nhshackday/f5hM4e672XM your comments and contributions gave me the courage to take it forward. Thank you.

I have been working on the project trying to get a sustainable model, so that it becomes feasible long term. We have got it in a local bicycle shop here in Swansea http://t.co/fjGdnkk3Th , and we are also selling it online at http://www.bcon.cc, which is really great. I'm hoping to take this in other directions, and if you can think of anything that might be useful, get in touch.

I'd also like to encourage those who are think about attending, it is well worth it, even if you think your idea is too simple.

Thanks all, and keep up these events, great work!

[Anne Marie Cunningham]

Well done! It's great that you have done so much with this. Please share any lessons you have learned :)

AM

[Malcolm Newbury]

Great to meet you David - nothing can beat a super simple idea that\’s well executed!

Malcolm

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[David Rankin]

I could almost write a book Anne. Lol. Thanks Malcolm, still got a long way to go,but the hard work is done. Now we have something to talk about. We just need help marketing it now, and getting the word out there.

I think the thing that most motivated me to follow through was the buzz from the hack day. People (complete strangers) where very positive and encouraging and that has kept me going. The idea has also been knocked down by a few people. But I have met many who have said. Just do it and don't give up.

I met a lawyer recently, and was talking to him about it, and he was saying that so many ideas are never followed through to completion and that I shouldn't look for excuses to give up. Let public decide.

Let's see how the next few weeks go.

[Barry Rowlingson]

David,

 I really don't want to be thought of as Mr Negative on this group, but...

 The web site doesn't say that the stickers need the responders to have a working data connection. For your target extreme sports market people are often out of range. It looks like Lifesquare have addressed this quite neatly by having a short alphanumeric code next to the qr code that could be read over a voice channel (eg shortwave radio) to a base that has comms. No mountain rescue person is going to unglove to get their phone out to scan a qr code in a snowstorm when they can recite 9 letters over their handy weatherproof radio.

 It doesn't point out that *anyone* who can see your sticker can get to your information, and that includes your phone number and any details you've entered, such as health conditions and your emergency contact's name and number. Just taken your helmet off in the cafe after a long mountain bike ride? Anyone in camera range can get all that. There might be stuff on there you don't want your best mountain bike buddies to see, let alone random cafe people. Point (4) on your home page should be "Let your buddies scan your Bcon and see what horrendous medical conditions you have". Lifesquare address this problem by limiting access to registered official agencies only, but that obviously limits the utility to those people. 

I'd rather have a sticker that says "in emergency, see details on wristband/locket/wallet" - which works even when out of radio range and restricts access to people - than write my health details and contact info on my bike helmet.

I'm happy about your 'let the public decide' line, but please make sure they are sufficiently informed about the restrictions and risks.

Barry

PS Me, negative? I actually responded to a blog post critical of Hack Days recently with a defence that included  NHS Hack Day success stories!

 

 

[Marcus Baw]

I agree with some of your concerns Barry, especially the issue of privacy. It’s great to see innovation like this going on at NHSHD, and it’s OK to have debate about ideas, which is what this community is for. With regard Bcon.cc, in reality for most fit & well people, paramedics’ standard procedures will do no harm at all and there is no need for additional information. For those with an important medical condition, a MedicAlert bracelet is by far a more robust solution.

The time when knowing a patient’s identity becomes most important is actually after they arrive at hospital, when ordering tests etc is hampered by not knowing the identity. This is simply solved by wearing your NHS number on a sticker on your bike helmet, or on a bracelet, or wherever you want (for example your NHS number visible in a smartphone lock screen wallpaper image). Using the NHS number reduces significantly the ‘privacy’ issues, while still ensuring that anyone with access to NHS Spine services and Summary Care Record can a) identify you, and b) get basic medical information about you.

M

[Helga J Perry]

I like the bcon.cc idea a lot and think it is well worth building on, taking on board the suggestions people have been contributing. It is up to the individual how much personal medical/health information to provide and share, so if someone only wants to put NHS Number and emergency contact details / next of kin that is possible. Personally, I don't have any problem with anyone anywhere knowing that I am a type 2 diabetic on Metformin, Sitagliptin and Dapagliflozin. It's my own information and it is my choice to make it public.

ciao

Helga

Sent from my iPad Mini

[VJ]

Personally, I would have the QR code on a creditcard sized card.

That way I control access, or the paramedic finds it during a wallet biopsy.

 

VJ

[ian.mc...@gmail.com]

Good discussion which highlights the very personal risk/benefit profile that each of us perceives around our health data. The more we can respect  individual choice the better IMO. That choice is not always rational or well founded but it feels to me that there is a tendency to treat patient privacy as a religious matter without much respect for individual choice, in contrast to the way we are expected to respect patient preference eg re cancer treatment.

Ian

Dr Ian McNicoll

Clinical modelling consultant Ocean Informatics

Mobile +44 (0) 775 209 7859

Skype imcnicoll

[Marcus Baw]

I agree Ian, it is for individuals to decide about how much information they want to make available and that is fine.

The bit I don't get is why you need a QR code to do this. Seems just an unnecessary complication. If you want to make detailed info public (as Helga) then just write it on your extreme sports equipment in plain text with a sharpie!

But the real shame would be if someone relied on this to convey some really critical information like a serious allergy, or important medical condition, and it was NOT recognised, because of it being hidden in a QR code, or lack of data connection, or lack of smartphone, or lack of familiarity with Bcon.cc.....

M

[Helga Perry]

If it were really that serious or critical, one would not rely on just that one method of conveying the info. One would use the most appropriate means of getting the message across. A good example is the wristband developed by some of my colleagues here in Coventry that is now in use everywhere for patients that have ocular gas. 

As for etching my list of meds into my bike helmet with a sharpie, it's much quicker & easier & takes less space to print a qr code on a sticky label or stencil. Personally, I'd be happy with a microchip like my cats have. Vets seem to have pretty good systems compared to practitioners of human medicine.

Sent from my iPhone

[Barry Rowlingson]

On Tue, Mar 11, 2014 at 12:09 PM, Helga Perry <shark...@gmail.com> wrote:

 Vets seem to have pretty good systems compared to practitioners of human medicine.

 Yes, especially considering how hard it must be to get cats to sign those consent forms...

 

[Helga J Perry]

There's a YouTube video of a cat playing with a care.data leaflet

Sent from my iPad Mini

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[David Rankin]

Hi all, thanks for your feedback, and quite a few things mentioned here came on the Hack Day too. No Barry you are not the only Mr Negative - maybe the first ;-), but feedback is what I am looking for, and your points are valid, thank you.

(Sorry it's taken a while to reply. Have had some issues... Why does it take *around* 6 weeks for a medical record to move from one surgery to another, when the surgeries are less than 4 miles apart?...)

I am not sure how LifeSquare or any of the other competitors operate, we actually found quite a few variations on this idea all offering different solutions at different costs, so LifeSquare in itself is not unique. In fact the most interesting device was the ICEDot Crash Sensor - RRP around 125GBP plus annual subscription fee, now that is out of reach of my pocket, don't know about any others. And as with all the systems we looked into, each was subject to limitations. Eventually, as  technology improves hopefully the limitations, such as, poor signals, short battery life, GPS Systems being turned off, etc.. will be overcome.

Regarding privacy, from experience, I have found that friends of mine who have medical conditions, tell me they have issues, just in case something were to happen. ( I often forget what they have when we are doing outdoor pursuits, but they remind me) I would be very concerned if a system had a very extensive medical record of me accessible online, where I was not in control (dare.data).  I suppose any data stored on the internet is susceptible to abuse, even if "only health care professionals" are supposed to have access.

Privacy was a big concern in all these systems. We address this with Bcon, delete you profile, and this offending "Photo Graph" you mentioned won't work anymore. Generate a new profile and you get a new QR Code. Here the "patient" is in control of his "mini" medical record. From the start, we had the idea is that you are in control of the data, and you can choose what you want people to know.

(aside) Photos of physical objects can be risky, has anyone read -> Reconsidering Physical Key Secrecy: Teleduplication via Optical Decoding by Laxton, Wang and Savage?  On my crypto course when I was a student,  some classmates invented a solution to stop people from "sniffing" your dorm keys from a slyly taken photo. This involved a piece of card held together by sellotape, which you slipped over your dorm key, to prevent it revealing its secrets, we could try make something like that... :-) 

Yes, we liked the idea of a wristband with a Bcon QR Code too, and we may well  try make one, if people want it, just like introducing different access levels/privacy levels, if people want it. The reason we have not explored the wrist band is that I don't  want to encourage public (non medically trained) people to twist someone's arm to find/read a medical band. I much prefer the hands off approach with something like an NFC/FRID Chip, which you can store more data or a link to relevant information, but that all boils down to cost, and also availability of suitable reading devices....

Finally, let me know about this "anti *NHS* Hack Day" blog post, I'll add my two pence too. I know that hack days are disruptive, that's why I think they are brilliant, exciting and make changes for the good. Let people be creative about problems we deal with and fix things instead of doing... nothing...

On Thursday, March 6, 2014 11:19:59 PM UTC, David Rankin wrote:

[Helga Perry]

One suggestion for improvement: the calendar for date of birth is more suitable for forward planning, e.g. travel booking. There are others available which make it easier to select year, month, day of birth.

Sent from my iPhone

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[Barry Rowlingson]

Finally, let me know about this "anti *NHS* Hack Day" blog post, I'll add my two pence too. I know that hack days are disruptive, that's why I think they are brilliant, exciting and make changes for the good. Let people be creative about problems we deal with and fix things instead of doing... nothing...

Steven's blog post was not anti-NHS Hack Day, it was some mild cynicism about hackathons being mostly PR events for the organisers:

http://knowwhereconsulting.co.uk/what-the-hack/
 

Just to note that Steven is one of the good guys in the open data/open source arena, he was chair of the international open-source geospatial FOSS4G conference in Nottingham last year, to much acclaim.

Barry

[David Rankin]

That calendar date picker! It is a problem. I tried using the snazzy new built in date pickers with the new  iphone(iOS7) , android and html 5 browsers, but the localization was getting messed up, and dates were going in the wrong format, and older phones just ignored it....

I also tried a few date pickers, but on windows phone I had issues with bootstrap, and then my old android phone kicked up a fuss and would not scroll when the jQuery calendar popped up. Trying to target x-browser has been difficult,  its quite time consuming, I have tested it on nokia lumia 520, ipad 2, nexus 5, htc desire, samsung galaxy ace 2 and some other emulators, IE9, IE10, Safari and Firefox, Chrome..... I have about 4 different physical devices I can test on, but each one seems to play a little different, so I have been force down to the least fancy solution, oldskool drop down menus, sadly. :(

But luckily you only need to fill it in once, if you want, but I might write a script that does some browser / platform detection, and gives the best date UI for your device.

If anyone has or knows of a really cool date picker tool, let me know. I have always been impressed by sencha (Ext.JS) http://docs.sencha.com/touch/2.3.1/#!/example/pickers