The Future of Health App-ointments

Several of the many people who write or track RxISK posts, have had input to this one, which dovetails with Harriet Vogt’s post last week Repairing Ruptures in Clinical Care and the work of Shane Cooke and Mary Hennessey in getting health systems to listen to the voices of those harmed by treatment.

The post, maybe, casts an ominous light on our abilities to get medicine to help us live the lives we want to live. It, perhaps, suggests it is increasingly likely we will have our life dictated to by what was once, but no longer is, medicine.

Has something chucked a professional medicine out of the health services nest? If so, what creature has done this and is there anything we can do about it?

App-Ointments

The first stone in the avalanche described here was this link to Flynn Pharma, discovered by Peter Selley. For a while there have been links or pop-ups in medical records telling the doctor or clinic that your cholesterol level has not been checked. But Flynn’s link takes this to another level.

The Flynn App plugged into the Electronic Medical Record (EMR) your family doctor holds on you, scours your details for hints you might have ADHD. It drafts a referral letter to a partialist – Flynn calls a specialist – adding in all sorts of cardiac and other details a partialist should want to know about prior to putting you on some medicine but never bothers to collect himself.  See Generalists and Partialists for more on this distinction, coined by Dee Mangin.

The Flynn advert has the partialist cooing at the beauty of the referral – much better than the usual referral we get. No hint either the family doc or the partialist realize they are being cuckoo-ed – or should that be cuckolded?  No hint what this might mean for you.

The ADHD Referral Toolkit can be accessed here thanks to Yoko Motohama another RxISK contributor.

An appropriately digitally generated ADHD Referral Transcript is here – thanks to Patrick Hahn yet another RxISK contributor, whose ADHD book features below.

The Flynn package comes with Teaching Toolkits to teach parents and children about ADHD – and other goodies.

App-ropriate?

The Heads They Win Tails We Lose post on DH – also called Tangled up in Bureaucracy – this week outlines developments in ‘medicine’ that have serious, potentially lethal, consequences for both those of us taking medicines and for what remains of medical professionalism.

When we go to a doctor we no longer meet a professional who will look at and listen closely to us with a goal of coming to a consensus with us about the problem or issues we are bringing him or her – as would be appropriate for a professional. We meet someone who, in recent decades, whether a generalist or partialist, has been shape-shifting before our eyes into a bureaucrat, inappropriately masquerading as a professional.

• Someone who views Drug Labels and Guidelines as Evident Based Medicine.
• Someone increasingly likely to threaten to throw us off their list if a blood test comes back with a high cholesterol level and we refuse to take a statin or some other ‘preventive’ treatment.
• Someone who will mark us down as a refuser if we refuse a blood sugar lowering drug or a vaccine, who pays no heed to the consequences for our insurance premiums of making these entries into our medical records.  Does our mean anything any more?
• Someone who steps back and lets regulators (other bureaucrats) decide what we should know about the treatments s/he puts us on.
• Someone who is becoming vanishingly unlikely to let us leave the clinic without putting us on more chemicals. I use ‘chemical’ here rather than a medicine as a medicine is a chemical that comes with genuine information aimed at making the use of that chemical as safe as possible for us – not safe for some company.
• Someone who as Heads They Win points out – another gem from another RxISK contributor – is increasingly likely to be playing word-games.  We get diagnosed with diabetes or cholesterolemia, osteopenia, depression or whatever but the entry in our record says ‘patient thinks he has treatment-induced this or that’.
• Someone who is ever less likely to know that even if we do have a real diabetes or epilepsy these can often be managed without medicines. Unlikely to know we are at greater risk of ending up in hospital from the treatment s/he gives us for diabetes, hypertension or osteopenia than from the condition we supposedly have – often even when it has left untreated.
• Someone who is the face of a force that is appropriating us – making us theirs.

All of this is set to get a lot worse.  Family doctors will be reluctant not to endorse a referral that an ‘expert’ App recommends. They can rationalize this as leaving it to the partialist to decide if their patient has the condition or not and should be put on a controlled chemical or not. The referral might even happen without the generalist knowing – these things can be delegated to a practice manager.

ADHD-ology

The ADHD-ologist is unlikely to view the person referred, whether 2 or 82 years old, as not having ADHD.

Things can get seriously crazy pretty fast. You might have started on an SSRI, to which you reacted poorly. Rather than stopping the SSRI, some doc will have decided this means you have bipolar disorder, and you will be given one or more anticonvulsants. If this doesn’t sort things out an antipsychotic will be added.  At the next clinic appointment, if you mention not focusing quite as well (which is how antipsychotics work) instead of telling you this you will be given an ADHD rating scale and ticking the poor focus boxes your EMR will generate an ADHD referral.

Rather than stop the antipsychotic or undo a prescribing cascade, a stimulant will be added to the mix which pulls the opposite way on the dopamine system to the antipsychotic.

It’s as though your doc had asked you to step on a weighing scales and putting a 10lb weight in each of your hands, diagnoses you as being 20 lbs overweight and suggests Ozempic.

The word games will then start.

An ADHD diagnosis will enter your record.  If you have problems on the treatment and you (or your mother for youngsters) stops it, the entry will be ‘thinks’ the medicine is causing a problem. A further entry will be refused treatment.  Your insurer or whoever will take note that a treatment for a condition that company propaganda claims increases your risk of suicide, gambling, divorce, career failure etc, has been refused. Your premiums will rise.

It may surprise you but old-style good doctors were good at fudging your medical record even outright lying to avoid compromising you with details like these. Now in the unlikely event a doctor figures you might have diabetes and offers you an option to try diet, weight loss and getting fit and if doing this the ‘diabetes’ disappears, and s/he tries to remove diabetes from your record, the computer will prevent this happening. It is programmed to ‘believe’ diabetes can’t be cured.

Beyond Ruptured

Therapeutic relationships are heading beyond Ruptured.  The chances of you getting Care rather than commodities are vanishing. You are increasingly likely to be viewed as a commodity yourself.

On a follow the money basis, the sell you the diagnoses that will land you on chemicals will appeal to the makers of Apps and EMRs.  The hint of money to be paid will mobilize those with any abilities to create an App, along with those with abilities to sell an App. The EMR companies can sit back and squeeze the best deal for them out of the situation – consulting perhaps with the drug and other companies who also stand to gain.

On a follow the money basis, the Apps and EMRs that sell you diagnoses and ‘preventive’ meds including vaccines for ‘vaccine preventable diseases’ will appeal to governments, who swallow the line that this is the only way to contain escalating healthcare costs.  See The Descent of Man.

Heads They Win, Tails We Lose – both government and markets view you greedily.  What are we up against?  Is there a way to put things right?

The Parable of TaperMD

A decade ago, the failure of efforts to get people to use RxISK reports to level the conversational playing field with their doctors about problems on treatment that might kill them, revealed a strange new world.  Most of us, it seems, are petrified to talk about these things to doctors who are supposed to be there for us – Repairing Ruptures in Clinical Care.

It’s unfortunate and stigmatizing in this world to be a woman, or old or have the wrong skin color but it’s even more stigmatizing to have a condition. We tell ourselves we have got over ideas that an illness like epilepsy means either we or our parents have sinned and epilepsy is punishment. But the relief people show when you mention you have a condition from epilepsy or AIDS to nervous problems and imply you are on treatment shows the stigma is still there. It rises in all its grisly horror if you say you aren’t on treatment – Dos Centavos.

Our sacraments (chemicals) pick out the saved from the damned. They are the modern day equivalent of holding women under water to see if they are witches. A poor response means you are not one of us. You are going your way rather than our way.

The original RxISK team were united in a vision that saw people harmed by medicines as mostly correct in their view about what had happened to them and not just that but as people who hold the keys to scientific breakthroughs.  Some of the team had family members killed by medicines – so you’d imagine they’d be unlikely to compromise with a system they thought had killed a loved one.

Dee Mangin came up with a way around the dilemmas that our early experience with adverse event reporting posed.

Rather than confront your doctor with an adverse event, rather than cast doubt on the sacraments, let’s see if we can give you more treatments that work rather than take treatments away. The path to helping you lay in reducing medication burdens – from 10 or 20 drugs down to 3 or 5. You are much more likely to get 3 or 5 benefits this way than from a cocktail of often irrelevant drugs which do little other than sabotage other drugs in the mix. Let’s see if between us we can get you more of what you want rather than take things away from you.

This led Dee to research your needs through focus groups with people like you and to embody your views in a platform – TaperMD – Team Approach to Polypharmacy Evaluation and Reduction. Taper in this setting means reducing medication burdens, rather than tapering off an antidepressant.

See Saving Judy

At it’s heart TaperMD has to have some algorithmic elements.  It aims at presenting you and your doctor with a dashboard listing the meds you are on and some of the common risks linked to these.  Judy is worried about falls and of the 8 or more meds she is on 4 are linked to falls.  Seeing this on a dashboard shows her and perhaps her daughter along with the pharmacist or doctor the 4 that might be putting her at risk.

Seeing this opens the door to a conversation. Perhaps we should Pause one of these 4 and Monitor what happens. The conversation is key to transforming chemicals into medicines – something that might help us live the lives we want to live. The algorithm in the Taper case was designed to enable conversations – it cannot be let decide what happens next.

Has Judy ended up on 4 blood pressure meds because the first 3 didn’t work while the fourth did but the first 3 all got left in place when they could have been removed?  Is she on drugs to lower blood pressure because some other drug is causing it to rise? Are there ways other than meds to get her blood pressure to a good enough level? Healthy blood pressure is able to fluctuate and maintaining variability is healthier than keeping blood pressure rigidly to some ‘right’ level.  There is no right level.

The ideas and the work that went into shaping Taper were inspired by Dee’s vision of medicine as something that can help us live the lives we want to live.

Algorithms are scalable and can be incorporated into an EMR. Conversations are not scalable. They are Once is Nothing (einmal ist keinmal) moments – part of The Unbearable Lightness of Being.

Doctors working for organizations are increasingly unlikely to see Taper if it doesn’t turn up on their EMR. If any people who manage doctors or others in healthcare do get to see the conversations, they don’t have a metric that let’s them appreciate that the conversations are worth their weight in gold. This element of human interactions cannot be metriced. Are there consequences for the vision, if the algorithm gets embedded into an EMR?

Taper began when polypharmacy was an older person’s problem. The easiest place to run trials was in residential homes where people were most likely to be on more meds than they needed. Many of these homes are businesses where time is of the essence, staff regularly turn over and are slaves to the tick-box engine component of patient EMRs. All of this militates against conversations of the kind that are needed.

An algorithm embeddable in an EMR makes an App like TaperMD attractive to big players – like the companies who make EMRs? These companies likely get a kickback from embedding Apps like the Flynn App that lead to increased drug sales in their EMR – is there any incentive for them to embed TaperMD, which reduces drug burdens?

Dee’s compelling vision and magnetic presentation style brought Taper onto the radar for some of the Big Guys. The smell of money entered the room and led to a crisis within RxISK leading to an attempted coup by our ‘business’ side, who seemed to think it was time for the Adults to take over the Room. It was like an intense episode of Succession.

There are a lot of ways the crisis can be framed.

• Let’s run with the Big Guys, at least temporarily, because it is in the interests of anyone who buys into the Vision to ensure TaperMD becomes self-sustainable.  But we need brakes because things could go badly wrong and Taper in the wrong hands could harm people. My reading of Dee’s position. My position.
• Let’s do it because an algorithm is an algorithm. The dashboard is obviously a good thing, we can’t see how it could be harmful. One of my readings of the apparent position of some of the others linked to Taper, who viewed some nice sounding doctor talk as academic mumbo jumbo rather than real world thinking.
• (This is the pharma position – selling drugs on the basis of algorithmic elements that suggest on average there will be a benefit. It is the Protestant Ethic writ large – God rewards those who do ‘good’ things.  We do well by doing good. The fact that God does this through the market is not a problem for those who feel God is on their side).
• Let’s do it because we could get wealthy. One of the possible readings of the real position of some of those linked to Taper. Perhaps the real pharma position also.
• Let’s do it – a very different option is laid out near the end of this post

In the last two years it has become clearer that Deprescribing, another word for Reducing Medication Burdens, can be inappropriate – could be very in-App-ropiate if left to an App.  See Deprescribing – Where does Responsibility Lie?  Potentially Inappropriate Deprescribing.

The Taper crisis led to a divorce and efforts on the part of some in what was the RxISK team to try to sabotage RxISK, Data Based Medicine and Samizdat. It has taken a lot of work to save them.

Parables and Reality

Similar issues play out on another Taper front – this time efforts to save the multitude whose sanity is compromised by, and lives are put at risk from, dependence on psych meds. The meds that Pharma and Regulators and an increasing proportion of doctors view as a good thing, and apparently find difficult to envisage harming anyone, never mind harming more people than they help.

We wouldn’t intentionally harm a fly. How dare you suggest that we might view injuries to the occasional grandmother as the cost of doing business?

Those trapped by chemicals in what can be a living hell are now caught between a bunch of neuroplasticitioners who have seized on a bit of biobabble ‘neuroplasticity’ to promote a Mind-over-Matter ‘psychotherapy’.  Deep inside the mumbo jumbo are some simple elements that make sense –  see  Interoception or Neuroplasticity.

See also Madness, Normality and Antidepressant Dysregulation.

But when these simple things, which you can do for yourself for free, don’t work you end up in a doom loop. You get told this is because you have not adequately dealt with some prior trauma maybe even a past life trauma.

On the other side you face a simple hyperbolic tapering algorithm also based on biobabble but one that can be incorporated into EMRs and sold in packages. It is a soundbite that is scalable uppable, which is the basis for a business model, unlike Peter Groot’s Tapering Strips. Peter’s Strips have evidence they work but he has run into bureaucratic difficulties in getting reimbursed, as, all too-believably, bureaucrats find it hard to support the idea that you might need 9mg, 8mg, 7mg, 6 mg etc doses – none of which were specifically tested in trials and are licensed.

On yet another side there are private clinics gearing up to sell you fashionable treatments like NAD+ infusions.  Clinics like these will be licking their lips at the psychotropic drug dependence crisis.  They are likely to offer fly-by-night risky treatments, which have not been tested in trials, to which in stark contrast to Peter’s experience governments and others will turn a blind eye. Private consumers get to do what they want – public consumers don’t.

All parties aim at making money. This not completely unreasonable in the case of something that works. Something that genuinely works needs to be self-sustainable and this is not an easy ask when you are trying as TaperMD was trying – to reduce the number of meds people are on.

Tapering antidepressants and related drugs is very different to TaperMD.  Pharma companies are highly likely to love Hyperbolic Tapering Apps or the hyperbolic message generally for two reasons. One is it provides evidence there is no real problem with our drugs that a little tapering can’t solve. The other is that they want to get rid of SSRIs from which they now make no money at all.

A People’s Movement?

Maybe TaperMD should be a people’s movement. That was one of the options when it began, not one that the business side of Data Based Medicine bought into.

One of the visions was that the daughters of women or men on too many meds or in residential homes (Tiger Daughters) could use TaperMD to generate an opening for conversations with pharmacists and doctors aimed at reducing their parents medication burdens. This would reduce the risks of a parent going into hospital after predictable drug induced hazards, it would enhance their quality of life and above all it would reduce the risks of them dying prematurely.

Older women show signs of realizing they should get off some of the meds they are on. They are perhaps increasingly likely to use something like TaperMD if it was a free-standing App that could be accessed for a small fee perhaps.  They might then mobilize their daughters for support.

Looking at this scenario, retrospectively, some purists might say it’s obvious we should have gone down this route to begin with.  It’s certainly appealing but not obvious. Getting something great out there that is never used isn’t much good to anyone.  Getting something into an EMR so it pops up on your doctors screen when you are with him is more likely to get it used and get things happening and maybe lead to a change in mindset.

In the past year or two it has become clear that polypharmacy, which until recently was an older person’s problem, is increasingly a Generation Rx problem. TaperMD, created by a woman, looks more like a must have for the women sitting at the Tiger Daughter – Tiger Mom interface – maybe even for Gen Rxers themselves.

Does a message like this apply to the other initiatives mentioned in this post?  Enthusiasms built on attractive soundbites can attract a lot of people for a period of time – enough perhaps for some people to make a lot of money. Only something that comes with clear evidence that it works, which TaperMD has, can support an enduring People’s Movement, and in our current increasingly precarious situation this, rather than gimmicks, is what is needed.

There are barriers in the way as this post hopefully brings home and the next post on RxISK will add to – probably called something like Removing Obstacles to Tapering.

Borrowing from Hamlet, the effect that money can have on many of us who might otherwise have great things to offer others is a dram of eale, the stamp of a tragic defect:

Carrying, I say, the stamp of one defect,
Being nature’s livery, or fortune’s star—
Their virtues else—be they as pure as grace,
As infinite as man may undergo—
Shall in the general censure take corruption
From that particular fault. The dram of eale
Doth all the noble substance often doubt
To his own scandal.