There is an ongoing discussion on whether patients were to be engaged or involved in research- or even participate in it. At which stage some invariably phantasise about long lines of patients queuing to join clinical trials, altruistically donating their time, samples and data, seamlessly ensuing a discussion about whether that actually classifies as participation (it does not). Despite plenty of evidence to the contrary, there is then the common understanding that patients cannot possibly conduct research on their own. It's obviously an optical illusion: the moment you conduct research, you are re-classified as researcher. As patients can't conduct research, remember?
Patients themselves are a heterogeneous group. Between those who happily believe anything stated by those-who-should-know and those conducting research themselves lies sufficient spectrum to justify any type of professional interaction between patients and researchers as 'wanted by patients': from the most superficial to the most substantial. ¨
Terminology and the realisation aside that one will always find mutually acceptable researcher/ patient pairings that differ wildly in their degree of interaction and overall ambition, there are several valid reasons to take patients in research seriously and so far, I can think of 5 of them:
Tick-box or self-serving patient engagement activities are disrespectful of people's time, reduce them as persons to the label of a disease and mock their intention to make a difference.
Patients with scientific knowledge keep patient communities safe. Patients seek out other patients for learning and mutual support. Science is a method. In patient communities where no one is able to apply it, true and a false statements are allowed to co-exist as 'personal opinions', for fear of conflict. A few individuals per patient community who can demonstrate and teach how to verify scientific information can keep large patient communities safe. Science is learned by practicing and involving patients in research means practice.
Patients can focus difficult discussions on what matters, reign in politics and prevent people going off on irrelevant side tracks, just the things that often derail research consortia. Obviously this only happens when the setting is right- patients need to be in the room, aware of what's happening and not afraid to speak up.
Patients can disrupt group think. Just like diverse management teams outperform homogenous ones, the intersection of scientific fields is challenging but particularly good for generating entirely novel insights and deliberately breaking one's own mental frames a known technique to improve one's thinking, being affected by the outcomes and in cancer this often means, your life at stake, gives you perspective and clarity on what matters. And no, patients don't only ask for applied research. But yes, they are likely to ask for validation, translation and scale- and they are not the only ones doing that either. Also, patients aren't blank pages but have a professional background, skills and contacts. Which might just be what a research project needed.
Patient and citizen involvement is increasingly asked for in grant applications and is already a competitive advantage. I don't think this needs further explanation.