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Patients: the essential ingredient in drug research

Increased patient involvement can make the difference between getting a treatment accepted or rejected by the target market.

Patient involvement at every level is critical, if you want treatments to be accepted and adopted.

Here’s an unavoidable truth: drug development is a costly business, and always will be. The expense, however, is worth every penny if lives are saved and general health is improved. Cost can never be justified, though, if the patients fail to take treatments. In spite of robust marketing in healthcare, billions of pounds may as well be thrown down the drain if medication is ignored, so the question must be asked: why produce the drugs in the first place?

To medical experts, of course, this question is always answered at the point of production. Why else, indeed, would intelligent people choose to pursue a course of action? When drugs aren’t accepted, however, it’s because the experts have missed a vital piece of the jigsaw: patient involvement.

Including patients in every part of the process – from research, to trials, to development – is not just a gesture of care or goodwill. It is essential if we are to know whether or not a drug really works, because human beings have one thing guinea pigs don’t: free will. A cure can only exist if it is accepted first.

So how, then, can patients be better involved in the treatment process?

Working with patients, not on them
The majority of patients don’t have medical qualifications, but that doesn’t stop them having sound patient insights based on a grasp of science – especially when it comes to their own bodies.

Bodies such as the Research and Innovation Forum (at University College London) exist to make patient involvement the cornerstone of research, but these aren’t available to everyone. At a more local level, researchers can make leaps and bounds with ongoing input from patients – and not just from asking the right questions and listening to opinions. A case in point is the ‘six-minute walk test’ used on Duchenne muscular dystrophy sufferers, wherein body movement is tested by ‘shoot ‘em up’ video games. This method is not only fun for the patients, but highly effective in getting accurate results. But best of all, it takes into account what particular patients want (in this case young men), and in so doing brings satisfaction to sufferers who, as a result, develop trust in pharma researchers.

With trust, a working relationship can be formed between patients (of all ages and social groups) and experts. By including patients in all stages of the process, data can be more fruitful and accurate and, as a result, the right drugs can then be perfected and rolled out.

Sharing results, with clarity
Patient involvement should not end with test participation. A pat on the back with a “thank you and goodbye” only serves to alienate and infuriate patients – as well as leave them uncertain about their own futures.

Making results visible gives a sense of inclusion, and enables patients to feel they have some control over their wellbeing. They can assess their conditions more thoroughly, and understand their situations and take positive action as a result. UCL’s Comprehensive Biomedical Research Centre, for example, has a HIV database which is accessible to patients. This empowers sufferers to analyse data in their own time, whilst giving reassurance that progress is being made in fighting the disease.

Pharma companies need to remember that clarity is key in sharing results. Lay people aren’t experts, and so jargon and industry-specific speech must be ‘toned down’ or removed completely. In broader terms, effective medical communication is about entering into the kind of dialogue that is best understood. This means engagement using the most relevant patient platforms – be they social media, community groups, blogging/video sites and wherever else patients ‘hang out’. But above all, communication is about listening. If you understand how patients ‘speak’, you will understand how to speak to them – and be heard.

‘Patient involvement’ is not just a gimmick, but an essential ingredient in drug research because, quite simply, the patient’s input is not merely a boost to any research team. It is essential for success, because the knowledge and understanding of patients is perhaps as valuable – if not more so – than any trial data when it comes to fighting disease and bad health. 

This blog was first published here:

9th June 2017



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