As a cancer patient, you are part of research. Even if you do not participate in a clinical trials or any other form of experimental medicine, your tissue samples or at least your data will be part of research projects. Overall, that's a good thing. Unless cancer becomes curable, research is one of the things we desperately need. Effective research.
As a cancer patient, your ability to influence research, let alone leverage it for your own benefit, is minimal. As you are in a situation of dependency from your medical team and your primary concern is to survive, you will agree to conditions- hand over your samples, your time, your data with no strings attached- you otherwise would not accept. That is not only a form of power abuse but it is also bad for research.
Cancer patients stand with their backs against the wall, with limited options to impose their will and even fewer to influence the overall research ecosystem. It is therefore on us as cancer patient advocates- who are at least one step removed from the situation- to do so.
Research does not equal research. Like in most areas of life, the normal distribution also applies here. There is terrible research, there is a big middle bulk from kind of relevant to rather useful research and then, there is the type of research that moves fields by fundamentally advancing the ways we think about a problem.
Then, there are different fields of research. Basic or fundamental research. Clinical research. Implementation research. Research in different fields- physics, biology, social sciences, statistics, public health. Applied research. And one can waste an extraordinary amount of time discussing which one is most important. It's a false dichotomy.
Research does not exist in an empty space. Research infrastructures are critical enablers by providing teaching and access to technology and expensive equipment and resources like databases, model systems or biobanks. Crowd-sourced resources created and maintained by the research community itself are another, less visible success factor.
The fundamental currency of research is papers, publications in scientific journals. There are nuances to it- scientific journals come in different shapes in forms, their importance captured by the Impact Factor. Papers come in many different shapes and forms, like long articles or short articles or commentaries or reviews or communications or conference abstracts. They can be peer-reviewed or not. They can be Open Access (researcher pays) or pay-walled (reader pays). There is an entire art to the order of authors on a paper.
Papers are not only the currency for personal recognition but also degrees, positions and funding. 'Publish or perish' is an expression any researcher is all too familiar with. Papers are so critical to academic success that an entire predatory publishing industry is feeding of researchers' struggles not to perish. Papers matter in numbers- the more the better. The citation index then is the academic equivalent to social media's 'number of shares' and intended to capture a paper's relevance.
Understanding papers means understanding what motivates and drives academia to large parts. Understanding that papers don't cure patients means understanding that in order for more research to save more lives we need to re-align the incentives for conducting such research in the first place.
As a cancer patient advocate, this makes research policy an important field of work. Ensuring that research funders fund research that moves fields ahead and create research ecosystems that optimally exploit bottom-up, curiosity-driven research ('solution in want of a problem'). Challenge-based approaches ('problem in want of a solution') are popular but solving problems as complex as in health nearly invariably means working with a diverse set of stakeholders. As anyone who ever tried knows- this is non-trivial and facilitation, methodology and support could make all the difference here.
As anyone who ever tried also knows getting resources- data, samples- *into* registries and biobanks is way easier than ever getting anything *out* of them. This is unacceptable. Cancer patients might be desperate enough to sign over their rights to their data and samples, however this does not mean absolution from accountability. More often than not these entities are publicly funded and should therefore deliver the largest possible benefit to patients and society at large, not papers to a few.
What gets measured gets managed and you get what you incentivise. It's time for us cancer patient advocates to do our part to re-think research. As- no paper cured a patient ever.