Tl;dr - We’ve been giving a lot of thought to the meta aspects of the funder-grantee relationship, and this discussion is what emerged.
Each month, I have the opportunity to have a conversation with my point of contact, Paul Tarini, at the Robert Wood Johnson Foundation (RWJF). These conversations are quite wide ranging, from talking about specific aspects of project work (e.g. designing the convening) or meta-discussions about the way we’re doing work (like power dynamics, etc.). One of the meta discussions that has emerged repeatedly has been the novel aspects of RWJF funding a patient as PI for the first time. Paul and I have lightly touched on this topic off and on, but a few months ago, we mutually agreed that it would be valuable to more deeply explore this discussion, and to perhaps do it in a way where we could then share it with the rest of RWJF and the broader world to learn from our experiences.
How might we do that? Well, we discussed being on a panel together at a conference; writing a joint article for a publication; etc. But we also decided we should start with a structured, mediated conversation with a 3rd person to ask questions and guide the discussion. Paul nominated his colleague, Emmy Ganos, who kindly agreed to be our discussion leader and note taker. Paul and I each independently brainstormed some questions beforehand for the discussion.
Here is the list we landed on for the conversation:
- What didn’t RWJF understand about working with an unaffiliated citizen-scientist?
- Are there specific needs you have that we can’t accommodate? How has the design of our system and processes made it hard for you? Anything we have in place make it easy for you?
- If you could re-design the formal structure and process, what would you do differently?
- What did Paul not understand about working with a citizen-scientist?
- How receptive was he to your ideas about the project, how to conduct it, what was important?
- If you could re-design Paul, what would you do differently?
- What expectations or assumptions did the citizen scientist have that Paul was surprised by? Were any expectations misaligned with Paul’s?
- What cultural/grant norms and unspoken rules had to be spoken and stated? Which of these still applied; and which may be ignored or adapted?
- What processes could be put into place to help develop relationship between Grantee and PM? If there are some resources already, how might those need to be, or could be, presented to the citizen scientist grantee?
- How might onboarding to grant be different for first time citizen scientist PI, or similar to another first-time PI?
- What characteristics or elements in a project might you look for in a future citizen scientist? Does this differ from traditionally-led projects?
- What skills might be missing, or should be additionally strengthened, for future citizen scientist PI’s?
- Some of the questions ended up being quite similar, some of them ended up being unique to our relative perspectives.
The discussion began with me answering the question about what RWJF did not understand about my work - and I spent a lot of time trying to re-articulate the challenges of being an “independent researcher” and how that influenced the process and our work. I’m running this grant through ASU, which has a series of challenges with me not being able to advocate on behalf of the grant inside ASU. I have co-PI’s, but they’re busy and this is not their primary project. So for a variety of reasons, the power dynamics are such that even with the grant, I am mostly powerless in the minutiae of accessing and moving money around. This was a frustrating point for me, personally, (it took forever to get paid the first time, and my payments are often delayed by 2-3 months), as well as subcontractors to the grant work. This is something that mostly subsided after the first ~6 months once everyone was settled into the grant, but it slowed down the work immensely and sucked up a lot of my time. I am only budgeted 40% of my time for this project, and so I would (and did) have to choose between sacrificing my other time outside the grant and spending extra unpaid time to move things along, or choosing to sacrifice the actual work of the grant and delay some aspects of the work. I didn’t like being forced to make that choice.
Along with being independent, being new and a first-time PI also came into play. All of these aspects meant I was unsure about what to expect and ask from Paul/RWJF, and I was also looking for more guidance, including emotional support, than perhaps is typical for a grantee. This might’ve been influenced too by the fact that our grant work was less concrete (do x, after you figure out y and z and the needs of abc) than a typical grant project might have been (do x by doing y). During this call, Paul emphasized that this surprised him, and we talked about a few things that might help ameliorate this in the future.
I was surprised by Paul commenting on how things sometimes required a more thorough explanation than other grantees might have needed. I’m not sure how much of that was me being a patient PI vs. a first time PI vs. being a very literal person who wants to make sure I understood what we were talking about, so that’s hard for me to unpack as clearly. It did emphasize to me that the on-boarding experience of our relationship could have been more thorough, not just around discussing the project and what type of support Paul could provide, but building the working relationship including getting a better understanding of personalities and skill strengths and weaknesses up front. This is something we intuited over time, but we might have benefited from somehow having more of those conversations up front.
One of the other things Paul and I both talked quite a bit about was how “emotional” the conversations were. His words there, not mine. I would refer to them as “hard” conversations, and I still struggled with hearing them categorized as “emotional” because there’s a lot of stigma around being female, and a non-traditional professional, a first-time PI, etc. I feel like I have the weight of the world on my shoulders, not only to do the work and do it well to my own high standards, but I’m very cognizant of the fact that future patient grant funding could be at stake depending on how I work, how I react, etc. It may influence RWJF’s willingness to fund this type of work, as well as other funding organizations. That’s… a lot of pressure. It’s always top of mind for me, and that’s led me to make decisions and push for things where it wasn’t about my needs/desires but about improving the space for all patients and future patient researchers. That was and still really is hard for me, given the seemingly unequal power dynamics that are often in play. It’s not that RWJF did anything “wrong”, but this first-time experience of getting a grant and having a 3-way relationship with ASU as the grantee further diluted the power dynamics and everything often felt more complicated than sitting down and getting the work done. So the “emotional” work has often been the hardest for me to do - but I think it’s also been the most valuable and yielded the most insights for all of us about this work and how we need to continually work to redesign the “system” and processes in place around this type of grant-funded work.
I think the other thing I learned from this conversation was how I was looking for feedback from Paul/RWJF that they don’t normally give. They provided the grant; they don’t usually give feedback for how the work is being done. Giving the grant is an indication of trust and support in of itself. But working as an independent, I was still looking for feedback at a high level for the direction of the project. I got it if I asked super specific questions to get Paul’s opinion and draw it out, but didn’t get as much feedback otherwise as I would have expected. I was also surprised that when I submitted my annual report, I never got a peep back from RWJF. It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things. I’m still not sure if anyone has looked at the annual report I submitted, and what if anything it does. (I’m also really glad we’ve documented our work in this blog along the way, because it’s another way to share our progress and our thinking out loud, and get different types of feedback from diverse perspectives. Having written so much about our work along the way also made it easy to recap our work from the past year. PS - you can see the annual report content we submitted here, and the rest of our thinking out loud on the blog here).
I talked a lot about unequal power dynamics, the challenges I had as a patient PI - and I’m being very vulnerable and open, and have been from the start about how hard this has been as a process and for me personally. But I also come in with a lot of skills from my professional background (communications, working in large healthcare organizations, etc.), that gave me a lot of insight to how organizations worked and how to deal with and navigate bureaucracy. I’m not completely without skill/experience, and so the frustrations I have with bureaucracy are not just that I’m unequipped and inexperienced (which might be common assumptions of “patient” researchers or “new PI”s) - but my experience shows me how hard the process is and that we can do better. I may have “survived”, but I want future patient researchers to be able to “thrive” and not be bogged down by this extra administrative set of headaches that may limit the power of the impact of their work.
In summary, I found the “mediated” conversation with Paul quite valuable and I’m glad we did it. I think, because of our relationship, we could have had a conversation between the two of us and gotten equal value from it, but those who didn’t feel as comfortable between their funder contact (or who had a different relationship for any reason), having the “mediator” would have been valuable. I also really appreciate that Emmy took super detailed notes for us, because I was so focused on participating in the conversation that I would have been distracted by taking notes. This type of conversation is something I’m going to recommend to others who are exploring new/novel partnerships and grants like this, and it’s also a conversation I want to have with the rest of our Opening Pathways team near the end of our grant to look back at how we did the work, and not only the obvious outputs from our work.
Thank you to Emmy Ganos for leading our conversation; and thanks to Paul, as always, for being willing to experiment with new processes and have all kinds of different conversations as part of our grant.
(Paul and I also agreed that we would each write up some thoughts on this process, share it with each other, and give each other a chance to write a response that would be posted, unedited, alongside our original post. Above is my original post, and below is Paul’s response, unedited/untouched by me. I’ve asked for permission to post Paul’s original post and my response, too, and will post that in a separate post and link it back here as well, for full transparency. The untouched response was Paul’s idea, and I really appreciated that, too.)
Here are my reflections on Dana’s post…
Dana did a better job of creating a complete product than I did. Because her version has better context-setting, I think it does a better job of inviting readers in to the experience than mine does. Both pieces have an amount of reportage in them and that I think is fairly similar. That’s a good thing, as it means we heard the same things in largely the same ways. I’m glad we’re not talking past each other.
There are two things in Dana’s piece that gave me pause. The first is her discussion of the word “emotional.” I did not think about the way the word is used to stigmatize and delegitimize women when I used it. I should have thought that through and been more careful in my language. Sorry.
But I want to talk through was I was trying to explain. I was trying to capture what was different in the conversations I have with Dana and her colleagues from the ones I have with PIs on other grants (female and male). Those other conversations focus on the operational aspects of the project and often also have an idea-sharing part to them. The calls with Dana et al also do this. But then they occasionally have this additional content. I’m calling the emotional/hard stuff content for a reason: I want to put it on par with the other content, the operational aspects and idea-sharing.
This content included conversations about the relationships and perspectives in play as the work got done; and, people also showed/expressed their feelings about those relationships and perspectives. This content was not labile, that is, emotional in the stigmatizing use of the word. It was considered, forthright, honest and constructive…and I think it helped advance the work, just as our discussion of the more operational aspects of the project did.
So: it’s my bad for using ‘emotional’ as a descriptor. It’s the project’s good that we’ve included the content in our conversations. Thanks, Dana.
The second thing that gave me pause: “I was also surprised that when I submitted my annual report, I never got a peep back from RWJF.” Yipes. “It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things.” Whew. Dana’s right in that she didn’t hear from me about it or from the rest. I read it, but because of the good communication we have, I was looking for something new, not shared during our regular calls. Since I didn’t read anything surprising, I didn’t raise the annual report as something we needed to discuss. But I should have acknowledged it. Sorry. I also think Dana’s right in that there’s a disconnect between what I need to do a good job for her as her program officer and what my institution needs from PIs as it administers a philanthropic enterprise. Or, at least, there’s some duplication. As of this writing, I’m not sure how to resolve that…the truth is that for most bureaucracies, creating flexible and sensitive requirements is an unnatural act. I know that’s not very satisfying.
I want to echo Dana’s thanks to my colleague Emmy Ganos for facilitating our conversation, she did a great job. Also, I want to thank Dana being willing to engage in this reflection. For all the discussion in these posts about power dynamics, my experience with Dana is she’s not intimidated in the least. But she is occasionally annoyed, and that’s a good and instructive thing.
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