It is a truth universally acknowledged that clinical trials are the bedrock upon which all medical progress is based. Without successful trials new medicines are not introduced, new treatments are not developed, and new understanding is not gleaned. The furtherance of knowledge hinges upon the successful design, execution, and interpretation of clinical trials.

It sounds simple when you put it like that. Yet too many trials fail and poorly designed studies, with little consideration to real world concerns, are doomed to failure. One of the most commonly cited reasons for failure of a clinical trial is patient recruiting and/or compliance. Patients drop out of studies, for a variety of reasons. And many a researcher bemoans the high dropout rate in some more expensive and extensive trials. Often the blame is explicitly placed firmly at the feet of the patients, and patient culpability can be assumed.

This is a fallacious argument. Lord Nuffield once famously said “if your experiment needs statistics, you should have designed a better experiment.” The same applies to clinical trials. To paraphrase Lord Nuffield, if your trial needs better patient compliance than was attainable, you should have designed a better trial. If a clinical trial design fails to reflect real-world patient concerns, it is the fault of the trial designers not patients.

The solution is breathtakingly simple. Involve patients. Involve patients in every step of the process from conception to execution. Only when patients are involved in protocol design will the outcome be a clinical trial that is realistic, pragmatic, and attainable.

Yet despite recognition of this obvious prerequisite, trials are still being designed without patient input. And it is hard to see the reasons why this practice should persist. To exclude from the design process the principal stakeholder group is either an act of wilful neglect or scientific arrogance. The first is, at best, an act of incompetence. The latter is perhaps more understandable — if no less culpable — as the death throes of the old order of patrician healthcare and research.

All of this has to change. If we want to have genuine participatory medicine, we have to acknowledge that this cannot be confined to the clinic. It cannot simply be a change in individual healthcare. And while the notion of patient-physician partnerships began as a means of devolving decision-making more to patients, we cannot expect the concept to be confined solely to the consulting room.

Medicine is about research. And just as patients are key stakeholders in their own healthcare, so must they be key stakeholders in healthcare for the next generation. And perhaps here, we patients are to blame. Perhaps we have been insufficiently vocal. Perhaps we have failed to speak up when opportunities arose to influence these clinical practices. Perhaps our silence was taken as tacit acceptance of the status quo.

If we as patients want successful clinical trials, and I think we can assume that we do, it behoves us to help our clinical colleagues. It behoves us to insist that our views are heard, understood, and actioned. We have to help our clinical colleagues understand that a better understanding of patients and a better understanding of science are one and the same.

Competing interest: Over the past five years I have participated in advisory boards or patient panels for GSK, Merck Sharp and Dohme, Lundbeck, Abbvie, Britannia, and UCB. All of these advisory boards and patient panels were paid but to my employer (The Cure Parkinson’s Trust).

Jon Stamford, The Cure Parkinson’s Trust & Parkinson’s Movement.