Hot and Cold

Some musings on the joys, oddities, encouragement and occasional knock-backs of invites to diabetes events...

Lanyards, obviously. 

Apologies for the radio silence of late. I meant to write this post months ago, but somehow never quite managed to grab the time for it. Initially I had planned several posts each detailing different events and experiences, all fascinating and full of wit and laugh out loud anecdote, but eventually they all began to coalesce around a single theme of confused grumpiness, so that’s what you are getting instead.

I was lucky enough to be invited to a number of diabetes events in 2019. It’s always an honour and a privilege to receive an invitation, and in no way do I want this post to read as my being in any way ungrateful, or my taking those invites for granted. Because I absolutely do not. I am fully aware of my rare position of being offered an invite - a seat at the table - and it is not something I take lightly. At all.

Sometimes I was invited by device manufacturers, other times by pharmaceutical companies, or diabetes charities, or healthcare professionals and researchers. Sometimes I was invited to speak, other times I was invited to listen, or perhaps to participate in discussion and conversation on some diabetes-related topic or other. My travel (and accommodation if needed) was paid for by the inviting organisation, and the events are always fascinating with much for me to learn and take away. Sometimes they were in the UK, but my travel and attendance at EASD in Barcelona formed part of my year - a first for me, and every bit as enormous, interesting and ever-so-slightly overwhelming as I had imagined it might be. Except perhaps more so. (EASD is the European mega-conference for those working in the field of diabetes, it is mindbogglingly big).

Hot
Almost without exception my attendance at events is surrounded by enthusiastic comments about the importance of hearing the ‘authentic voice’, the lived experience; the punter’s-eye viewpoint. Having people with diabetes at these events seems broadly welcomed and encouraged by most healthcare professionals. Many say how important it is. How vital to hear from and connect to people who live with Diabetes day to day, to hear their experiences, and to listen to their stories. When I’ve been asked to speak, the feedback forms have been overwhelmingly positive, almost to the point of embarrassment. Clinicians anonymously feeding back that they are intending to change their clinical practice because of the experiences and thoughts they have heard from people living with diabetes. “Best talk of the day”, “So important”, “Much to take away from this”... the welcome could not be warmer.

When I was appointed to be one of the ‘lay’ members of the NICE Guideline Development Group for T1 in Adults, we had training and support to help us unpick the clinical data that we would be asked to review. It was made very clear from the outset that our voices and contributions, though entirely without medical qualification, were felt to be just as important as anyone else’s on the panel. We were actively encouraged to speak up, and to ask questions - even if we suspected everyone else probably knew the answer... partly because sometimes they didn’t, and would be very glad we had asked for an acronym to be spelled out or some terminology or other explained. We were told how important our participation was felt to be. And to their huge credit, the clinicians and researchers around the table never once gave me the impression that they wished I would shut up, no matter how much they may have been thinking it privately.

Increasingly it seems research projects and clinical trials are being put together with PPI inbuilt from the ground up . (PPI being ‘patient and public involvement’ - are we allowed to say ‘patient’ this week?). It appears that in some cases, perhaps even many or most cases, funding for research and interventions depends upon clinicians and researchers ensuring that the ‘patient and public’ voice is represented, and that there are non-medical people involved in the review, and design of studies and materials.

And I think all of this is a good thing. Nothing about us without us.

But...

From the very first ‘big thing’ I went to (Diabetes UK Professional Conference if I remember rightly), it was clear from the outset that we PWD didn’t belong.

Cold
“It’s the regulations I’m afraid...” “Nothing we can do...”

My first visit to the annual DUK professional conference involved me being ‘co-opted’ as a blogger onto the Press Team. As a person with diabetes I was not allowed to be there. I was not welcome.

Mostly this is because of fearsome pharma regulations, which forbid the advertising of almost all pharmaceuticals directly to the general public (hay fever and headache tablets etc aside). Significant fines and penalties hang like a Sword of Damocles above the quivering pharma multinationals who cower beneath it. If you happen to live with T1 diabetes and also be a journalist... or work for a pharmaceutical company... or a diabetes charity... or a device manufacturer... you appear to be immune to the devastating potential impact of walking past a poster for a new T2 medication. But as a mere PWD mortal? Perish the thought.

And this strikes me as a little odd. Because. The internet.

In a world in which I can look up published research papers on Pubmed, or any number of research outlets,  I wonder how damaging it really is for me to see those research results presented and explained, along with lots of context and clarification at a conference. I wonder how much difference there is between reading a article by a journalist about a new medication, thinking it sounds promising, and then asking your clinic about it, versus seeing a poster in an exhibition hall as you walk through to get a coffee. At EASD, while I could attend sessions, there were large ‘no entry’ posters at the entrance to the exhibition hall forbidding my entry.

And these regulations are clearly terrifying. At one event I attended last year as a guest speaker, to give my experience and thoughts on diabetes appointments (a blog I really must get around to writing) I was not even allowed to go and choose my own lunch. Some exhibitors, getting wind of my attendance had made the organisers agree *in writing* that I would be chaperoned from the moment I arrived in my car. I had to wait in the reception area, and be taken to a special side room, accompanied at all times. Then someone went to choose a few things for my lunch (because the exhibitors were in the same space as the food). And when I had finished my talk, I was accompanied straight back to my car and I drove away. No time to chat to clinicians. No way to hear anything else. This sounds comedically extreme (and in fact it was) but I’ve heard from others who have been asked to speak and who have been similarly chaperoned, lest their eyes should wander or they stumble upon a discarded leaflet for PintoDactoTrophomax10 and expire from the shock.

I am sure the regulations were put in place for very good reasons (witness the bother we are currently in, with antibiotics after overuse driven in part by people going to their GP and demanding them for a viral infection). But really? I genuinely don’t believe they are fit for purpose any more.

How often do we see a news story about some new drug or therapy that has been deemed insufficiently effective for widespread use (or too expensive... or both). And parents and supporters are campaigning for access for little Johnny, or attempting to fly overseas to acquire the treatment there.

The law is an ass, so they say. And this pharma law seems doubly so. It is a hindrance. And it’s not doing the job it is meant to do.

But the thing that I find most troubling about this particular regulation in terms of diabetes, and my own experience of self management is the subtext of it.

Essentially, in a sense you could read it as saying, “You are unqualified. You are not trusted. You cannot make this decision. You are incapable of understanding the complexities of the issues involved. Keep quiet and do as you are told.” I know it isn’t actually saying that. But I think also... in some ways, it is.

To their credit, Diabetes UK have tried to improve access for PWD to new research and created the ‘Insider Day’ - a one-day version of their Professional Conference specifically aimed at people with diabetes, where some of the content from the main conference can be shared in a way that satisfies the rules. But does this (as great as it is) create a two tier ‘dumbing down’ structure? A watering down to make things more palatable and easier to digest? Conference Lite.

Spoiling it
The other slightly odd thing about getting some of these invites, particularly to the larger events, and where I have been asked to speak, is that some HCPs really wish we PWD weren’t there and would go away and leave them alone. Anonymous feedback forms (you do realise we get those to read afterwards, right?) which are completed with the apparent intention of reflecting this opinion back to organising committees... are also read by the people that give the talks. Some HCPs have suggested in the clearest possible terms that they thought my contribution added absolutely no value at all to the event, and they would much prefer it if I had not been invited to witter on inanely at them. I am not quoting, you understand... but the sentiment was pretty much there.

I completely understand the opinion of some HCPs that they would prefer their ‘own space’, and sometimes I see exactly the same wish expressed by people with diabetes about meetings or online spaces. Some people’s preference is to have a place where they can be, and share, and exchange thoughts with just their peers present. With no need to accommodate the sensibilities of others. I can see that sometimes you just want to have natural (unguarded?) interactions with your own. To kick back and not have to worry about minding your Ps and Qs lest someone gets the hump. Even the most supportive and passionate advocates of PWD involvement have been known to express this desire.

So I do understand it. But also I genuinely value an open interchange between n=1 lived experience and profound clinical and specialist expertise. I think that while there is a desire for PWD involvement in the conversation, being chaperoned, excluded, not trusted, and made to feel uncomfortable isn’t very helpful for anyone. I think we have much to learn from each other. I’ve seen some conference presentations that have made my head spin with the complexity of it. I’ve not understood all of it by any means, but when something is well presented, even if way above my understanding, I absorb the main thrust of the content, and find I remember it and can apply some of the complex physiology (or whatever) to my lived experience.

I also think being in a mixed environment helps to create and maintain respect (though sometimes this seems spectacularly absent in online spaces). I think sharing spaces can create empathy and understanding. It’s not like we are on ‘different sides’ right? Clinicians, researchers and industry want us to have better outcomes, and that’s exactly what we want too.

I do believe it is possible for both clinicians and PWD to express their authentic, honest experiences, and also maintain respect, and behave with kindness and courtesy.

I look forward to a time when the regulations change, and involvement (or exclusion) is done more openly and intentionally, not under the veil of what seems to me to be a rather outdated rule book.

I’d love to hear your thoughts.

Cholesterol confusion and climate change

Photo by Malcolm Koo (Creative Commons)

There are two types of people in the world - those who repeatedly suggest there are two types of people in the world and those who don't.

When it comes to cholesterol and heart disease however, there seem to be three types of people in the world: Firstly those who think fat is bad, cholesterol causes heart disease and statins should basically be put in the water supply; Secondly those who suggest cholesterol is a natural healthy substance, saturated fat is fine and doesn't affect serum cholesterol anyway and that statins are at best ineffective and at worst part of an evil plot by Big Pharma to make vast sums of money and hang the consequences to anyone who takes them. Thirdly there is the group that watches the two extremes bicker and squabble. That reads report after report each debunking the other's 'evidence' shrugs our shoulders and wonders what on earth to make of it all.

You may be able to tell that I am firmly in the third group.

I have tried to write this post many times before. Almost always after the release of some study or other which shines light on it (from either direction) in a pretty conclusive way. But each time this happens, almost without fail, within a day or two I will see something else that eloquently argues exactly the opposite point of view - and I find myself back at square one. So I have given up waiting until I have made up my mind one way or another and decided to just pour it all out. To try to explain my confusion - probably mostly to myself. It will be rambling, contradictory, borderline-incoherent, and in reality I should probably re-read it and get rid of at least two thirds of it. But I'm not going to spare you that, dear reader. You will just have to suffer along with me.

At the outset it is crucial to remind you that I have absolutely NO medical expertise whatsoever. This is not advice (perish the thought!). I don't understand most of this stuff enough to apply it to my own situation, let alone anyone else's. I know people that take Statins and get on well with them. I know people that have had terrible experiences with Statins and would not touch them with a bargepole.

The last time I nearly wrote this post was April this year when I read this report of the HOPE trial. I found this particularly interesting, because it talks specifically about 'primary prevention'. That's medical shorthand for giving people some medicine to prevent a thing happening that they might be at increased risk of.

“Statins work beautifully, resulting in a high significant relative risk reduction of 25%,” said Yusuf. Further, statins were “relatively safe,” though there was a small excess in muscle pain, but not rhabdomyolysis, in the statin-treated group.

Wow! 25% less chance of heart attack or stroke. Sounds pretty worthwhile. And HOPE-3 focussed on a population at 'intermediate risk'. So these are benefits that were shown to exist even where increased risk was only fairly modest. This caught my eye because you don't have to live with type 1 diabetes for long before people start telling you that you are going to die of a heart attack. That's what does for most of us, apparently. However perky your blood glucose management is generally, living with T1 you will almost certainly be having significant glucose excursions that 'nonnys' would never have. Of course you can significantly reduce your theoretical risk by keeping a lid on your blood glucose levels and HbA1c - but therein lies the snag for people trying to view any of this research and apply it to their own situation. Risk calculators don't work if you have T1. And primary prevention studies that take a cohort of people with a UK-average HbA1c of 9% or so, might have a different risk to you as an individual depending on your own fortunes wrestling the Diabetes Gremlins. Benefit shown to those at 'intermediate risk' was certainly interesting though. I've not had a heart attack, I'd like to keep it that way and I'm getting older year by year.

I had promised my clinic that I would continue to keep an open mind about the cholesterol issue, and perhaps this was it - the primary prevention study I had needed to convince me that it was worth trying a Statin and seeing how I got on with it, in the hope that my undoubted increased risk of heart-based shenanigans might be reduced by 25%.

The elephant in the room, of course, is the term 'relative risk'. Studies, particularly Statin studies, are quite keen on using that frame of reference as it usually gives a nice Big Attention Grabbing Number. So if your risk of something happening was 0.1% and it dropped to 0.08% it might sound pretty meagre. But you could express the same change as a 20% reduction in relative risk, which sounds much more weighty. Hmmmmmmm.

Hot on it's heels, if not chronologically but more in terms of the way I stumbled across things was this rather sensationalised tabloid reference to a study by Professor Harumi Okuyama, of Nagoya City University, Japan. This time, taking Statins can actually apparently *make things worse*. Harden your arteries and increase your risk of heart attack.

This was followed swiftly by this piece by Cardiologist and confirmed Statin sceptic Dr Aseem Malhotra which raises some well-worn questions over the entire evidence-base behind cholesterol-lowering drugs and the refusal of the companies to release the raw data on side-effects.

"biased reporting in medical journals, commercial conflicts of interest and medical curricula that fail to teach doctors how to understand and communicate health statistics was contributing to an epidemic of misinformed doctors and misinformed patients."

reputed French Cardiologist Dr Michel De Lorgeril's own analysis reveals that all studies published after 2006 reveal “no benefit” of statins for cardiovascular prevention in all groups of patients.

I'm not even going to open the can of worms that links Statins prescribed to people without heart disease and a doubling of their risk of developing Type 2 Diabetes. Frankly I have enough on my plate with the diabetes I already have.

And again here, from just this week. Another article that confidently suggests nails in the coffin of the cholesterol hypothesis.

Dr John Abramson, a health policy expert from Harvard Medical School, looked at the HOPE-3 trial and told me the effects were meagre indeed: “91 people have to be treated with a statin for 5.6 years in order to prevent 1 non-fatal heart attack or stroke.” Another way to say this is 90 of the 91 people who take statins for that long won’t see a benefit (and some will experience adverse side effects).

The observant among you will be smiling that exactly the same HOPE trial mentioned above with glowing 25% reductions in risk and very low side effects is now being interpreted as having almost no effect whatever *except* the possibility of side-effects. Though of course, for the 1 person out of 91, the 'not having had a heart attack' would probably be seen as quite a benefit. I wonder how you get to know that you are that 1 person and not one of the other 90. How exactly you notice that something is not happening to you because of a tablet rather than it just not happening to all the others.

And yet... and yet... Most doctors and scientists in the world seem to remain convinced of the link between heart health and lower cholesterol.

My basic problem
Over the last 4 or 5 years I have read a number of posts and articles from people who raise questions over the whole lipid/fat/cholesterol/heart hypothesis. I know that for some of you this will ring alarming tin-foil-hat klaxons, but articles like this (higher cholesterol associated with lower mortality overall *including* heart disease) and this (what causes heart disease anyway) are an entertaining read - and I cannot help it - but they do seem make a lot of sense to me.

I know that for some (many? most?) healthcare professionals some of these characters are a sort of... well, if not exactly laughing stock - certainly not voices to be taken seriously. People who insist that everyone else has it wrong and only they know the truth. Eyes roll. "OK then, if you say so. Never mind dear."

Perhaps it is precisely because I am not medically educated, that I have not learned and trusted the basics of the 'status-quo'. I have less invested in one way of thinking about cholesterol and heart health - and so it is easier for me to read these other arguments and think, 'Well that's interesting.'

Of course, proponents of the mainstream viewpoint will point to decades of scientific research and understanding that have brought us to where we are. For them the lipid-heart hypothesis is an unshakeable fact. And this or that or the other study* has shown that lowering cholesterol really does work. Most of their peers think the same. So take your tablets and feel safer.

*('Funded and published by the people that make the tablets!!' cry the sceptics)

And around and around I go...

• Lots of studies over many years show (apparently) convincing benefit of Statins for heart disease with very low risk of side effects
• Sceptics say the 'adverse event' data are under-reported and the pharma companies refuse to release the raw information for independent analysis
• When it comes to secondary prevention (people who have already had a heart attack) the evidence is much clearer. Most people seem to agree that they work and work well
• Even among cholesterol sceptics or neutrals there is a thought that it might be some activity of Statins other than cholesterol reduction (such as reduction of inflammation or stabilisation of plaques) that confer benefit
• Statins are the most profitable drug in the history of the world - vested interest doesn't even begin to cover it
• And yet I do not subscribe to the view that All Big Pharma Is Evil either - of course pharmaceuticals is a business and the companies have a requirement to make money for their stockholders - but I do think that it is in their interest to create 'products' actually help people, those will be much easier to shift after all

Climate change
The other day, all this made me think about climate change. A decade ago there was a funny little film by Davis Guggenheim and Al Gore called 'The Inconvenient Truth'. We don't even think about it much any more really. As I am sure many of you will remember, the eponymous 'truth' was that the actions of the human race had built up over time and were affecting the climate of the entire planet. Greenhouse gasses, climate change and all that. What struck me was the way that the voices that first raised these ideas from as early as 1896 were initially dismissed perhaps even ridiculed for their line of thinking. Not only that, but now that global warming has been firmly adopted into the scientific mainstream there are still contrary voices. Voices who will insist that for all the evidence that it is unmistakeably happening all around us that climate change is Nothing To Do With Us. That the whole thing is a hoax. A scam. Deniers who will wrap their arguments in convincing-seeming scientific language of planetary cycles, solar variation and internal radiative forcing. There's a conspiracy theory for everything it seems.

And I wonder where we are with cholesterol and heart health? Who is on which side? Will the ones who are being ridiculed ultimately turn out to have got it right? Or at least, made steps in the right direction? Will the mainstream position change in the light of more and better and more independent evidence? Or has the mainstream got it right already and are the cholesterol-deniers just confusing everyone.

I really wish I knew the answer. Because however many times I try to unpick this I always end up here. Shrugging and thinking... well I don't know! Which doesn't really do enough to convince me to take a tablet every day for the rest of my life.

Does social media empower patients or confuse them?

That was the question posed at an event held by Brandcast Media as part of Social Media Week London yesterday (no, me neither). I was chuffed to be invited to attend by Diabetes UK whose 'Digital Engagement Executive' the irrepressibly perky Amy Burton was speaking on the panel. Alongside her were George du Toit a Paediatric Allergy Consultant, Andrew Schorr 2x cancer survivor & founder of Patient Power and Sneh Khemka, Chief Operating Officer of Advanced Oncotherapy. Charlie Grieve, Brandcast's CEO holding the reins and gently steered the conversation.

When I arrived at Brandcast's groovy offices just off Regent Street the room was already filling up with a heady mix of cool and confident Social Meeja types, healthcare professionals and charity representatives. By the time the discussion started it was standing room only. I found a quiet spot and spent a few moments debating whether to avail myself of the funky Moleskine-esque notebook in Brandcast's signature bright pink. I gave Amy some encouraging smiles and nods.

What followed was a fascinating conversation about the impact of Social Media on patient experience. Almost inevitably the event was live streamed, and heavily tweeted under #smwdigitalhealth. Andrew Schorr gave a powerful account of his own experience, where the information and confidence he received through social media interactions led to him receiving completely different care, without which he quite probably would have died - "Social Media saved my life". Here are a few other snippets that stood out to me during the course of the evening:

"I have not a doubt in my mind that social media is empowering patients. But you need to know where to look/where not to look" Sneh Khemka

"Different people value and need different Social Media channels - everyone finds their own niche" Amy Burton

"Medics are, by and large, cautious of social medial" George du Toit

"Patients who share a diagnosis can push for therapies or question the use/effectiveness of certain drugs by working together" Andrew Schorr

"Some social media platforms are becoming the Trip Adviser of hospitals. Patients can assess the quality of their own care" Sneh Khemka

"HCPs need training in use and governance of Social Media" George du Toit

"What one change would I like to see? For more HCPs to engage with online communities" Amy Burton

As expected there were some concerns raised over the nature of some of the 'advice' in circulation in the FaceBlogTwit-o-sphere, over privacy and the potential (mis)use of data shared over social media, some of which can be quite staggeringly personal and sensitive. The general feeling though was that patients are making their own individual decisions about what they share with whom - and many of the online communities (from my perspective I would say particularly the DOC) are quite good at self-regulation, suspicious of 'miracle cure' nonsense and take all content with a healthy pinch of low-sodium condiment.

I suspect that quite a few in the audience were interested in gaining insight into how to 'leverage' social media channels (sorry, terrible industry phrase) on behalf of healthcare clients, private health providers and Big Pharma, it was encouraging then, that the panel recognised the crucial nature of transparency in these interactions. These online communities exist and are powerfully helping patients, but they are savvy, often fiercely independent and quite naturally suspicious of commercial interference. They will very quickly smell a social media rat if businesses come rampaging in with a clumsy marketing agenda.

It was great to hear the two healthcare professionals on the panel speaking so enthusiastically about their own use of social media in clinical settings (which seems to be on the increase as newly qualified HCPs come through who are already engaged in social media). Additionally there were some tantalising some glimpses of what might be coming next. For instance I had not heard of 'Watson' a computer system that is, apparently, better at diagnosing cancer than many doctors because it uses a constantly-updated database of research and evidence rather than relying on what it can remember from medical school and what Dr Sheh described as 'your own experience, prejudices and preconceptions'. What we need, he suggested, was the computer to number-crunch the data and evaluate the most likely diagnosis based on all the available evidence but then a sensitive, compassionate medical professional to interpret/relay that diagnosis in the light of the individual person in front of them.

The final question for the panellists was, 'What one change would you like to see?'. Half the panel wanted to see more involvement from healthcare professionals in social media communities, while Sneh Khemka rather pragmatically suggested that giving interactions/consultations over social media some sort of tariff so that healthcare professionals would come to see them as 'proper' earning work would be a sure-fire way to drive that.

We shall see!

Disclosure and all that. I wasn't paid to blog about this or attend the event. Diabetes UK kindly paid my train fare and Brandcast Media gave me a nice bottle of beer and some tasty nibbles at the end of the event. I decided against taking the notebook.

A little consistency would be nice

Here's a thing... And for once I'm not whining about trying to keep my blood glucose levels in range while attemping some semblance of a normal life.

There are quite a few insulin pens on the market, I think it's fair to say that some are nicer that others. Some offer half unit doses, others permit particularly large single doses. There are even those (actually just one in the UK right now until the NovoPen Echo is released) that automatically record recent timings and doses. There are prefilled disposable ones and more luxurious-feeling metal cased ones. Brightly coloured ones and grown up serious ones. You would think we diabetics would be happy.

However, aside from the fact that many of the pens are actually quite nasty (flimsy, plasticky affairs that feel rather less than reliable), there is something about their design that frustrates me intently. Because there is no consistency in the design of the pen cartridges, different insulins are only compatible with a tiny fraction of a pretty meagre range. There is, of course, no reason for this. Readers of a certain age will remember the development of Betamax and VHS video. After the early excitement of both formats, it became clear to the industry that all the electronics brands would need to produce players compatible with a single format. For many MDI users the paltry choice of available pens is little more than a minor irritation, but I read a forum thread recently where a doctor was looking for an pen device which was easy to use with one hand. Someone suggested a pen which had a spring-loaded delivery via a sliding switch (the Autopen 24), but because of the current limitations such a choice will limit the patient to particular insulins. On the other hand if you are on Lantus glargine and would benefit from half-unit doses there are simply no compatible pens on the market. There are half-unit pens available, but none that fit Lantus cartridges.

There is, as I say, no reason for this. Where formats are common (audio CD, DVD, USB) competition still exists, brands are still able to assert their own identities and strengths. It feels as though development of the pens is seen by the pharmaceutical giants as a bit of a bind. But these companies are investing (probably considerable) R&D budgets into the development of these devices. Wouldn't it make sense then to see the pens themselves as an opportunity in their own right. To make each pen compatible with all insulins on the market. To produce better/more solid/more stylish/more advanced/more [insert your own wish here] delivery devices to build relationships with insulin users. After all these are things we are using day in, day out.

So come on Big Pharma, how about a little consistency in insulin cartridge design. Then patients could match the best insulin for them with the injection pen that best suits their needs. Not too much to ask, surely?