Patients and carers will tell you that all that is good or bad about health research can usually be traced to its source. That place where the idea is first formed by scientists. Eureka moment it might be, they will say, but having patients and carers involved from the beginning can save embarrassment for all concerned by ensuring the scientist does not go running into the street without their clothes on.

The story of involvement in research is not dissimilar in many sense to the account of an explorer – a tale of pioneers battling their way upstream through the rapids and rocks to find the source of the river and affect the flow.  But the journey can be markedly different depending on who owns the land where the source lies.

Let’s take industry – pharmaceutical companies and others – for instance. Their upstream research – the source of their drug development work – has been conducted behind closed doors for many years. In recent years those doors have been pushed ajar and now the opening seems to get every wider with each passing day.

Reports like today’s published by the BioIndustry Association and Medicines Discovery Catapult called ‘State of the Discovery Nation’ – which call for a radical change in the pharma model of doing things by ‘humanising’ research and put the needs and priorities of patients first (among other things) – are significant for coming from within the room rather than those outside knocking on the door to get in.

In the same vein you may be interested in this report of a discussion hosted by the Academy of Medical Sciences Forum (which brings together industry with academics, patients, charities and others) on the subject of outcomes in clinical trials. It notes:

‘Using meaningful endpoints which are relevant to regulators, payers, clinicians
and patients requires measurement of factors beyond overall survival. Overall
survival is not the only meaningful outcome and other reliable endpoints are required to
assess the impact of treatment from clinical and patient perspectives. Examples include
impact on pain relief, symptom control and other aspects relating to quality of life.
Treatments may deliver patient benefits in addition to, or instead of, increasing overall
survival. From a patient’s perspective, benefits need to be weighed against the risks and
drawbacks of treatments including impact on quality of life and daily living; quality of life may be at least as important, and potentially more so, than longevity. Impact on quality of life may be harder to capture than ‘objective’ measures of treatment responses, and there is a need for new standardised and validated tools to capture patient-reported outcomes.

And this is quite an interesting article from Pharma Times about the different ways companies such as Merck and Sanofi are involving patients and carers in their upstream work in the drive to patient-centricity (an absolutely horrendous term which feels like one step away from eccentricity or a stop on the Northern Line but I shall forgive them for it on this occasion).  As is this press release that I found on one of the business wire services which suggest patients are affecting the bottom-line for companies in different ways than ever imagined.

So, patients continue to make their way upstream against all the odds. But at least the task does not seem as hopeless as before. At least we now seem to have a paddle in our hands.