Soon it will be autumn, the season of changing leaves- and of grant reviews! And with more and more research funders demanding patient involvement, it's also the time for many of us patient advocates to review grants. Some research funders still only want the patient engagement section reviewed- which makes little sense, none of us needs engagement for the sake of engagement- which is why I only accept grant reviews if I get to see the full grant.
In preparation for the season, I have now been reflecting on my learnings from past years, so here my 8 major points what to look for when evaluating grants for patient engagement:
Engagement to make a difference. Whatever the level or type of involvement- I am always looking for things that make a difference. No patient ever wanted to spend their time on pointless activities that did not change a thing- so I am looking for activities intended to make a concrete difference: sharpen the research question, select the most relevant model system, develop a service or a product that really delivers on patient need.
Never just read the patient engagement section. Everyone can be lyrically patient-centric on half a page. Look for consistency- the excellence section is a good start but ultimately, a sales pitch. Not surprisingly, the work happens in...the work packages. Are patients or patient organisation meaningfully involved in different work packages, either as members or as work package leads? Is that work concrete, based on clearly stated expertise?
Communication and Dissemination is not patient engagement. A convenient 2 for the price of 1 solution for many research consortia is to lump together communication, dissemination and patient engagement. While a totally legitimate way for patient organisations to diversify their funding, solely disseminating information outwards to whatever audience- that's not getting a patient view INTO the project where you would want it.
How much decision power and influence do patients hold? Something I learned from Vinnova, the Swedish innovation agency, where gender equality is evaluated by how the real decision power in a project is distributed between men and women, not just numbers. Have patients been involved in the grant writing? Do they run work packages or have other major responsibilities? Are they on the project's Steering Committee and/ or the Scientific Advisory Board?
Patient engagement is not self-serving or exploitative. Asking patient organisations to recruit for clinical trials or surveys or users for user-testing is not patient engagement. Anyone who has ever been there might not know the term but will most definitely have experienced attempts at co-option: Patients are 'involved' but never able to determine the final outcome, be it the design or analysis of a trial or a survey but are then asked for unquestioning support based on their sham involvement.
Lack of experience is ok, ill-intent or laziness is not. We all have started somewhere, so I prefer people, especially junior researchers, openly admitting that they are just getting started with patient engagement and share what they attempted. 'There is no patient organisation' where a simple google can tell you otherwise on the other hand- that's just plain lazy. And ill-intent- see above- is morally discrediting the research consortium.
Follow the money. % of total budget allocated to patient organisations or dedicated to patient engagement are the ultimate truth. Budgets should be ring-fenced and clearly dedicated- lumped in with 'publishing costs' or 'general travel costs' means that the money is likely to be spent on anything but patient engagement. If a patient organisation is project partner, is the budget proportionate to the amount of work these are supposed to deliver?
I am looking for *sparkle*. Once in a while, one gets to read a grant application that just *shines*: You get a consistent read and parts strategically complement each other. Each partner, including patients and patient organisations, contributes their specific and well-defined expertise and you get the impression people had fun writing this. The art lies in just the right amount of stretch between feasibility and the audacity to try something never-done-before. Which is precisely why patient organisations should train their people in grant writing.
Different stakeholders have different interests in engaging with patients and not all of it is about improving research: researchers e.g. want to get funded and research funders have to demonstrate they involve citizens and patients in their activities.
We as patient advocates should be aware of these interests and never engage to just tick someone else's box: I have written about the need for Return on Engagement before.
Most of us ended up in cancer patient advocacy because we are personally affected, either as a patient or a family member. We in Melanoma still lose half of our people in Stage IV. What we need is the best possible research- the right research hypotheses, effective translation, rapid product development and scale- and patient engagement is a tool to drive research quality.