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: http://www.bbc.co.uk/news/health-30348499. 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.

Keep track of your medicines with ‘My Medication Passport’ c/o NW London CLAHRC

I seem to be visiting more CLAHRCs (Collaboration for Leadership in Applied Health Research and Care) next week than in all my time as a boy looking for new school shoes.  One of the CLAHRCs unfortunate enough to be visited by me is Northwest London.

They’ve just launched a brilliant new tool to help patients keep track of medicine changes and improve communication with health professionals and others. ‘My Medication Passport’ is available in hard copy and can also be downloaded as an app on your smartphone.  The initiative is an idea that came out of the CLAHRC’s public involvement group and is already being used by 5000 patients across Imperial College Healthcare NHS Trust.

The ‘My Medication Passport’ web pages are bursting with good information to accompany the launch including patient testimonials and a video.  Really, really good and just the sort of thing that has been emanating from CLAHRCs. Here’s hoping this blog can help a little in putting it in the hands of more patients for whom medication changes are a real care and safety issue.

Since we are talking about innovation the Guardian did one of its online discussion today, this time on the role of the Academic Health Science Networks (AHSNs). Panelists included Jonathan Sheffield from the National Institute for Health Research Clinical Research Networks (NIHR CRNs).  The discussion can be found here although those nice people at the Guardian normally do a summary too at some point.

When good medicine is the casualty of hype and ignorance

I have just returned from the Financial Times’ offices, where I was the guest for their regular science podcast hosted by Clive Cookson and Andrew Jack (it will appear here later today).  The theme of the discussion was ‘Selling Sickness.’  Andrew was reporting on a recent conference of the same name that took place last month in Holland.  The programme and presentations from the conference can be found here and they made interesting reading as I was prepping last night.

For those who don’t know, ‘Selling Sickness’ is a term used to describe the way in which the pharmaceutical industry and other companies are said to collude with medicine and science to create markets for new and existing products.  The claim is that they do this either by exaggerating the existence of a condition, fashioning a disease out of what one might call the ‘unbearable ordinariness of being,’ or playing on the anxieties of both the worried well and unwell.  Sometimes all three of course, as I am sure many of us have witnessed.

It is a contentious issue and the discussion this morning was interesting.  That companies should be able to hop, skip and jump through the established routes of defining disease in order to market and sell products should be a concern to us all.

From a patient and medical research charity perspective the worry is more specific.  It is that such antics lead the genuinely-ill down the wrong road with regard to treatment, while encouraging the genuinely-well to believe the worst and follow a path that means taking unnecessary risks with their health.  Only through a combination of greater openness, better regulation and also patient champions working with and within companies can we perhaps avoid the worst vestiges of this.

But it also says something about deep trends and changes in our culture and society.  One in which the expectation is set that we must all carry some vestige of ill-health or impending sickness if we are to be ‘complete,’ to be able to exercise choice in its fullest sense in a world increasingly run on fear and neurosis.

The irony of course is that, as individuals, we are not good at taking medicine which is right for us.  Also, that people are generally lacking in the support needed to alter their treatment regime if and when their condition changes.  The challenge is not so much medicines wastage but how to ensure more effective use of existing medicines.  That certainly seems to be the evidence published toay by the York Health Economics Consortium and The School of Pharmacy, UCL.  

This study shows that waste from primary care prescriptions amounts to about £300 million a year.  As the authors point out, in the context of an £8 billion drugs bill in the UK, that’s not bad. Indeed, the report is at pains to say that the NHS is quite robust at tackling waste i.e the stuff that is thrown away.  The real issue, it says, is ensuring more effective use of medicine:

‘The new research finds that up to £500 million of extra value could be generated in just five therapeutic areas (asthma, diabetes, raised blood pressure, vascular disease and the care of people with schizophrenia) if medicines were used in an optimal manner,’ it says.

Pharma Times is reporting today that Earl Howe (who is speaking at our AGM tomorrow) last week backed the idea of a new medicines service attached to pharmacies to help improve medicines adherence when he spoke at the Pharmaceutical Services Negotiating Committee annual dinner (I miss all the best gigs in town).

Moving swiftly on, the research by the York and London teams could not be more timely.  For the last six months I have been involved in a fascinating piece of work stemming from the Royal College of Physicians report last year: ‘Innovating for health: Patients, physicians, the pharmaceutical industry and the NHS.’   Following its report, the College established a ‘Medicines Forum’ which was charged with looking at how the report’s recommendations could be taken forward.  This was to be done with the help of some sub-groups focusing on specific streams of work.

I am on what is called the patient sub-group – chaired by Harry Cayton and composed of patient representatives, pharmacists, GPs, regulators and others including Professor David Taylor from the School of Pharmacy at UCL.  We have chosen to focus on two issues: medicines concordance and; public involvement in research.  We are nearing the end of a series of enrgossing evidence sessions with a wide variety of people and organisations – from Boots the Chemist to the Royal College of Pharmacists, from the Science Media Centre to some of my members such as the Motor Neurone Disease (MND) Association – and will report to the College shortly ahead of a conference it is doing in February.

I feel that we are arriving at a good diagnosis of why people don’t take their medicines (it is as much to do with the quality of interaction with a health professional as with the quality of information).  We are now turning our minds to some solutions and recommendations.  I am sure that the need for more investigation and research into this issue will be one of them, and I hope that my members will take up the challenge as I know some already have.

But it has also highlighted for me that,  in the endless discussions about translational gaps in getting science from the bench to the bedside, we have spent far too little energy in the UK exploring how to ensure that it gets from the bedside to the, well, patient’s inside?  A simple process one would have thought.  But many influences can determine whether it happens fully, partially or not at all; I have already mentioned just two.  In the drive to create and develop medicines that meet real need, we must not forget the need to pay greater attention to this final, translational gap. 

That’s a long way from selling sickness I know.  But much more in the public interest, wouldn’t you say?