People and their medicines: from bench to inside pocket

Shall we start off with a sweeping generalisation? This is a blog after all.

Over the years it has been my impression that researchers care quite a lot about what happens next with their scientific discovery, whether it be identifying a genetic mutation or running a clinical trial.

The problem is, research funders don’t. They sort of do. But in reality they don’t. Because their funding and responsibility tends to stop at the point of diffusion and implementation.  And that arbitrary point at which they consider their involvement ends is marked by a number of clear outputs such as published papers in academic journals and citations.

There’s lots of talk about ‘bench to bedside’ research from funders, that’s for sure. But whether this is only in the ascendancy when it is necessary to sweeten themselves to politicians making spending decisions, is open to question. Fact is they are already behind the curve in talking about the ‘bedside’ – given how medicine is moving out of acute settings into communities and people’s homes.

Certainly, the public can be forgiven for concluding that too little thought is given to the suitability of a medicine or intervention in the context of their life coping with ill-health or disease. Perhaps that is why so few of us stick to our medicines when the doctor prescribes them. For whatever reason, the pills just don’t work for us.  Or they make us feel worse.  Or for some other reasons good or bad.

Why we should feel this way, was the subject of an excellent workshop I attended last week and hosted by the Academy of Medical Sciences and Faculty of Pharmaceutical Medicine entitled ‘Patient adherence to medicines’ (urgh to the use of that word ‘adherence!’).

My rough jottings from what people said during the day included, in no particular order: the debate about ‘adherence’ is always couched as if patients are to blame; things won’t change as long as the debate is dominated by the language of medicine and science rather than the language of people; a lot of the figures about the amount of money being wasted seem vastly inflated at best, and completely garbage at worst (experts say this, not me!); more medicines should be tested in ‘real-world’ settings and not just on Randomised Clinical Trials; engaging people properly about their medicines is the ‘blockbuster drug of the 21st Century;’ every medicines regime needs to be accompanied by practical help for patients (from the simple to the more complex) to support them to change their behaviours where necessary; there are rights and responsibilities that go with having medicines prescribed in a free health service; adherence should be replaced by ‘negotiated commitment;’ medicines development remains stubbornly resistant to patient-centred was.

It’s difficult to emerge from an event like this not feeling that the whole system is broken and then reaching for a cold flannel or stiff drink. Perhaps both. But Academy reports (this one will be published in the New Year) do tend to spur the Government to do the right thing. So I am trying to be optimistic.  It is just that the debate has been around for twenty years or more and the vested interests in keeping things the same seem rather well embedded, slippers, pipe n’all.

Of course, echoes of this debate are heard in many other places across health and social care. Only this morning Lord Winston and David Tredennick MP were having a right old ‘ding dong’ on BBC Radio 4’s Today Programme about homeopathy. And they touched on the fact that the one thing that homeopathy might have over modern medicine is the time practitioners have to build relationships with their patients.

Developing – and in some cases rebuilding – this relationship patient by patient in conventional medicine will be important to future-proofing the current high levels of public confidence in research. It will take all the tools of the trade to be successful. So has to be thought of in terms of not just bench to bedside but to our front door, lounge and, preferably, our inside pocket where we can carry it with us.

A good example of this was published over the weekend and covered by the BBC: This study showed how the use of text reminders helped many patients take their medicines and that such a service was appreciated by them. It’s also a good story about how social media can play an important role in helping to improve health and wellbeing in the future. If its perpetuators can be persuaded to show some humility and see it as part of rather than the whole solution.  Others like the CLAHRC NWL Medicines Passport, I have written about before.

On one level these sorts of issues seem complex and intractable, their solution multifaceted. On another they are more straightforward than we might think. But only if patients and the public are partners from the very beginning, from before the funder puts pen to cheque.

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