Saturday, November 18, 2017

Trial and Error





Do digital interventions in the world of diabetes work? Come to think of it, what defines what digital intervention is? The NHS has a fascinating approach to it all, ultra cautious to technology ( EVIDENCE shouts the detractors in a Len Goodman style) yet utterly oblivious to the clownish approach towards how we deal with governance or indeed evidence issues by sending letters via the Royal Mail. Who knows how much is acted upon, followed up etc.
Our zeal to be evidence focussed comes with a fascinating double edged sword...while entirely appropriate towards new medications..when it comes to technology and digital means, the approach is sloth like, cautious, defensive, suspicious.

Which is why I like the whole idea of disrupting the status quo- and watching the type 2 diabetes prevention digital strategy land has been fascinating to see. A very hard working team has gone through many a rigorous process and finally landed on 5 providers to see what they can achieve. There's a clear commitment to evaluate the results and see what impact it has- not only on usual things like weight, glucose but also, for me, access issues, socioeconomic determinants.
The approach is very simple...in 2017, having a digital platform to complement a face to face programme is about choice, it's about modernising...it's also about saying "I don't know whether it will work- but am happy to road test it and find out". The problem I have with folks who oppose every single thing is that as individuals who pride themselves on their prowess to interpret data, they also quickly succumb to their own confirmation bias. Very few are open enough to say..."do you know what? We are willing to look at this with an open mind". There is indeed the place for assessment of data, independent review before national roll outs...and more importantly business model which makes sense. However tweeting your outrage about something or anything digital from your slick smartphone takes irony to a whole new level, doesn't it?

If you want to know more about the digital type 2 diabetes prevention plan, have a look here. It gives you all the info you need, the process gone through, the areas where this will happen, the follow up plans and what comes next. There is no massive secret plot...just like the allocation of the diabetes transformation funds ( I repeat 42 million £ actually) it's transparent and based on one fundamental principle.."We are trying different things- as the status quo isn't working". As I have said multiple times, the best education programme is the one the patient attends, not the one which feeds on glories of the past. I will be very honest, if I develop any type of diabetes, as things stand with the education courses, I would find it difficult to attend them all. Not because I don't want to, but there is also this thing called life and I would like the system to fit around my busy life, not me fit in with the system. In the modern digital era, if anyone suggests so, it gets the boot and I find another provider who fits my needs. That's the way I do my banking, that's the way I do my shopping or my check in for my flights...why should my health be any different?

So we are here. The Type 2 diabetes prevention digital stream has landed, the Type 2 diabetes one will follow as will the Type 1 diabetes. That is the strategy and we shall find out what it delivers. If the face to face programmes are better, then there's nothing to fear, is there? Time should, in that case, show the digital ones to have failed and we will be the first ones to admit it didn't work. Heck, we should take pride that the NHS is doing something not many are trying- a digital programme nationally with a decent evaluation behind it too. The thing with innovation is exactly that...not everything works...we need to test, adapt, amend and find the one that does work...so we shall try.

The NHS England diabetes team have been clear about its direction:
Strategy and areas of high priority: NHS RightCare Pathway
Money and investment: Nearly 65 million £ into spread of NDPP & improving care
Reducing variation: working with GIRFT team to improve safety etc
Digital strategy: the first one has landed, more to follow
Access to technology: Libre on tariff and national guidance

No doubt we have much more to do - not to mention we have a fair few exciting things in the pipeline- so let's see what the future holds!

The encouraging thing is that we i.e. the NHSE diabetes team spent 2 days at a national conference of diabetes, attended by health care professionals from many quarters- and it was heartening to hear the words of encouragement and overall positivity. Maybe the detractors are just those who love being behind keyboards....to them? My request is bear with us, be patient..I can assure you there's no lack of effort on our part. Feel free to be a constructive critic rather than rage against the machines.

And if you can't, at the very least, don't sit in judgement on those who lives you do not live.You want to have a polite discussion about something you don't agree with? We are very easy to find.



Saturday, November 11, 2017

Keeping Up?

We are certainly in interesting times, aren't we? Technology is coming at us at the rate of knots in the NHS- and the NHS is trying to give it a go of fitting in with it- how successfully -is a debate of a different nature altogether I suppose. The problem is though a traditional "method" has been to block technology based on evidence, governance etc….it appears something has shifted- and thats the attitude of the folks using it- whether it be HCPs or patients.

Take WhatsApp- the puritans will say- don't you dare use it, cos data will be leaked, confidential information will run amok - and Orcs will inherit the earth..or something along those lines. It may be a good line for governance meetings, information commissioners…unfortunately not so for those pesky modern doctors or indeed, patients. In the underground, it rages - rampant. So the suggestion is "But we could create something which will be safe- why not use it?".

Problem? The reaction is.."Naah bruv, am good. I like WhatsApp- thats how we roll- so why don't you see how you can make THAT secure, rather than make me download ANOTHER platform". To most folks outside the NHS bubble of governance, its quite unfathomable that we would want to spend money on more platforms when we have free devices like Skype or WhatsApp. I mean, I can speak to my parents each weekend on Skype- who live in India- for free- but NHS? Shiver me timbers…have you done the Governance Dance yet? And this in spite of the NHS actually using it…oh no Sir, EACH area has to have its OWN governance sign off…cos the N in NHS stands for…well..I don't know…doesn't sound National to me. I paraphrase -but you get my drift.

Lets take now the latest furore of GPatHand…many pros and cons to it- especially valid points made about funding. If you strip away patients, then you need to ensure how you balance the funding…do you increase the "fee" for more complex patients? How does a GP surgery survive etc…and they absolutely must be looked at. But the reaction is -as ever- fascinating. Is it because its done by Babylon- cos all private organisations are the devils spawn? Would we have said hallelujah and about time- if it was done by lets say, the BMA (By the way, why not?)? I don't know the answer to that- but look at twitter- many a folks are saying this works for them too in their busy lives. So what now? This is what is called disruption…or is it modernisation? Do we rail against the concept? Or do we rail against the provider? Or is this the right thing to do because that fits around peoples busy lives in 2017- but without stripping assets?

This is where technology is caught. In the world outside, technology adapts to consumers. In health, we ask consumers to adapt to the system- and we then throw around words like "compliance", "non-attenders" etc. Diabetes is no different- look at education programmes, look at technology- its all about "No- YOU fit in with me"- not.."Ok, lets see what I can do to fit in with the modern world". Education programmes- resistant to change-as thats the way its always been done, thats what got the evidence- so it doesn't matter whether Jo Bloggs can attend or not- its about sticking to what worked in the 80s or 90s. So folks vote with their feet, find their own way- or not- and then we wonder why outcomes are not quite improving. Or indeed the attendance rates.

I have got one super solid tip to many a policy-maker. Try it. Not put it on a powerpoint slide. Not run a hashtag campaign. Its called "Listening to patients". Or as the technology world says "Listening to consumers"- thats how they develop the latest thing we all go "Oh I like THAT" about. Not have a token patient to tick a box on your committee. But actually do it.Technology is no different. If you find time? Look up something in the world of diabetes -something called "We are not waiting". The response from some quarters? Predictably- Governance and evidence. People are not waiting for the future to come to them, they are going and shaping it themselves. The billion dollar qs? Can we keep up? 

Interesting times as I say- but it feels like a moment in time- the NHS -is being prodded into doing things differently. And this one won't come from politicians- but from within the system-as well as the users. Don't block it…much better to enable it. The unfolding of all of this will be fascinating to behold.

Wednesday, November 1, 2017

Respair



Respair. Ever heard of that term? Its something from the 15th century to be fair. It means "Fresh Hope..or a recovery from despair". And I feel a bit of that today. 1st November 2017. A couple of things happened today- and am also going to use this blog to answer a few queries.

Well- what did happen was that Freestyle Libre got on the NHS Tariff. We started this year with me being roundly told it was impossible to get this to tariff- but with help from some tenacious allies of different quarters, we are here. Along with it, NHS England- via their Regional Medicine Optimisations Committee got guidelines out today to make sure we can try and reduce variation (so have Wales!) …so you see…respair it indeed is today. Most folks probably won't get it- but this is a big deal what so many have worked together to achieve- many years back,we made one big step of moving from urine dip to finger prick testing. Now we make the next one to go to non-invasive one- of course we have had Continuous Glucose monitoring systems- but the high cost of them have made it prohibitive for many, caused countless battles, much angst- though understandably the purists love it. However, at scale? At a population level? This is a big step change. Respair it indeed is.

So now to answer some queries- as there is only so much one can do on twitter. Some believe I have pushed for Libre -perhaps because I have "shares" in the company or something along those lines. No- I don't- and give me some credit-if I was, I wouldn't be doing it so openly. I may not be the brightest tool in the box- but not that stupid either. To clarify? I would do exactly the same for any diabetes innovation. You are very welcome to ask other relevant Tech companies such as Roche, Medtronic or Dexcom about my open interactions with them- and what we are trying  to do to improve access.

Second group have been a few academics- perhaps upset that they haven't been involved hugely- or their pure academic view of the world of Type 1 diabetes doesn't match mine. Or that they could have done with more money to conduct more RCTs while the population waited. Lets put it this way, I do consult academics- when i have Professor Stephanie Amiel, Pratik Chaudhury or Simon Heller to fall back on for advice and direction, I strongly feel that the bases are covered. Maybe best trying to emulate them, their work, their ethos- and then try & engage again.

Next comes some medicine management groups saying "What about NICE?". Well, this is an innovative way of doing glucose monitoring- plus the guidelines set are looking at cost neutrality (This is NOT being placed as something for everybody with diabetes)- whether it be by strip numbers or reduction of DKA admissions-plus timelines about stopping if it doesn't work/help. National level data will be collected for this- and we will reassess. 
I have also been told that you don't need to have anything to do with Type 1 diabetes to make a judgement whether patents should have this or not. 
Let me tell you my response to that- politely.

Its that sort of lazy-arsed bone-idle nonsense that led to many systems not recognising hospitals needed inpatient diabetes cover- resulting in enough harm. Much data and campaigning later, things have improved a bit. Why? Because those who live with diabetes or care for it- were ignored roundly. 
And perhaps this is where I disagree with some. I spent many years in meetings listening to people acting as self appointed vanguards, paying lip service about "involving patients" and swore that if I ever get in any position worth its salt, that won't happen. So yup, on my watch? We listen to patient needs and work with all to make it happen. Period. You want to improve outcomes? You listen to those living with it. If you don't believe in that, you are- categorically-in the wrong job.

To add- to areas which say NICE haven't approved- I will have a couple of questions for you. Fair enough- don't give access to Libre. BUT- have you given Pumps & CGM to your local population as NICE have said or have you used NICE as a convenient excuse when needed? Have you used drug prescribing as per NICE guidelines? Have you given Type 1 patients access to 6-10 strips..or have you said- "But its just a guide?"
So, to the minority- and I must stress- the detractors have been that- read the RMOC guidelines- and see which group of patients may benefit from it. As an added open offer, you want me to come to your CCG and take questions? Go on- am right here- I will come with my questions too. I will come also with the Right Care Pathway to find out if it has been adopted- and if not, why not. Savings and all that.

Finally, there's one thing those who are close to me know well- but for those who aren't- here you go. I have many flaws- I mean many, many flaws. A sizzling temper, an ego the size of a planet, a very open "No suffering fools gladly" persona…but what I do have? Is tenacity to finish what I started. Freestyle Libre is the start- there's plenty of technology around the corner to pick the cudgels up for too. 
I will finish this blog by thanking all the patient charities, specialist organisations, NHS England, NICE, NHSBSA, DH…all of whom have been absolutely amazing in their help. We are -hopefully-at a new dawn. Type 1 diabetes care- its about time we got up to speed- and fingers crossed, we can take the next necessary steps. The whole community needs a bit of Respair- and as long as I do this role? 
Will give it one heck of a shot. Lets see where it takes us.