This is Paul’s post reflecting on the funder/grantee relationship, & my response unedited to his comments. His was written for an internal RWJF audience. You can see my post & his unedited comments in response to that here.
Lessons From Funding People
The PI on this grant, Dana Lewis, is a citizen-scientist who is not affiliated with an institution…she doesn’t work at a non-profit, in academia, she isn’t a consultant. She’s a person, living her life, doing cool stuff.
Our systems are set up to make grants to institutions and organizations, not people. That makes it hard to work with individuals who have good ideas, though we can work around that…in this case we made the grant to an academic institution which in turn contracted with Dana. I’m not going to focus on the fact that our systems aren’t set up to work with individuals, I’m going to focus on a different issue I see: that our culture has blind spots when it comes to working with individuals.
In the spirit of figuring out how to do better on the next grant to a non-affiliated person, Dana and I interrogated our relationship…actually, Emmy Ganos graciously interrogated both of us. I may be the only one who needed to learn these lessons, but in the event someone else can benefit, below are the key take-aways:
Non-affiliated people may not have established benches and existing resources to help them with the grantee-grantor relationship and processes. Because they’re not grounded in institutions, they don’t have colleagues they can talk with about getting and managing grants and managing relationships with funders. There were instances early during the grant where I assumed Dana had some institutional relationships she could draw on, but as an outsider, she couldn’t just walk down the hall to the development office or the communications office. Any casual suggestion—“just do a budget revision for that”—took Dana more work (See the comment below about the three-way relationship.).
Another thing that you don’t get when you’re not grounded in an institution is emotional support. We (I) don’t often think about P.I.s needing some emotional support during the course of the grant, but it happened during this one (Dana raised this during our conversation with Emmy, so I’m not speaking out of school.). Day-to-day, Dana was working alone. Beyond that, while I thought of us as having a 1:1 relationship, I think she saw it as a 1:Person-Who-Represents-A-Rich-And-Powerful-Foundation relationship. I needed to recognize that providing some support and validation (from me personally and from the institution through me) was important to my relationship with Dana and lean in to providing that support.
The three-way relationship is complex. Because we don’t give grants to individuals, we needed to have a third party be the fiscal agent. Our grant here is to Arizona State University, which then contracted with Dana. Per our system, the officially-designated PI for the grant is on staff at ASU (he’s also working on the grant, which is good). But Dana is the in-truth PI on this. So she has to deal with two institutions—ASU and RWJF. And her formal relationship with both institutions is indirect. As someone outside of the grantee institution, Dana has no internal power there. “I wasn’t always taken seriously because I’m not the senior-most professor at ASU,” she said. To a large extent, she’s at the mercy of the ASU bureaucracy. So if a report is late, be patient, because it’s in the hands of the bureaucracy.
We could look for a structural fix for this problem. We could decide to create an easier grant making and managing path for individuals. That could include establishing a relationship with a fiscal intermediary that understood our interests in facilitating/enabling this category of grantee and then develop guidelines and processes with them. It would still produce an indirect relationship with the person doing the work, but it could be a more responsive one.
You need to have some up-front conversations and to anticipate some just-in-time conversations. At the beginning of the grant, Dana expected that I would establish some guardrails for the work and be more directive about how the work should get done. From my perspective, the proposal she submitted established the guardrails and I trusted her judgement about how the work should get done (If I didn’t trust her judgement, I wouldn’t have been comfortable with us making the grant). Telling her that I trusted her judgement up front would have helped. The just-in-time conversations are about things like how to do a budget revision, or reporting requirements. I think talking about such things before they’re relevant is information without context, so the conversations are not as useful early on. That said, letting them know early on that we can be flexible in how the work of the grant gets done is probably helpful.
Reflecting more, it might have helped for me to do a more intentional on-boarding, though it would be complicated by the three-way relationship. I could have talked to her more up front about our processes and requirements, but I couldn’t do the same for ASU’s. One thought here is for me to have identified a point person in ASU’s grants management office and establish a relationship with them. Then I could have interceded on Dana’s behalf when, for instance, it took ASU months to approve a sub-contract for legal consulting.
Another thing I needed to understand better is what it really means for Dana to be only 40% time on the grant. That means that the rest of her time is her life, including working to earn money. So a simple suggestion of, here’s someone to talk with about that; or, here’s a good article to read—she actually has to find the time to do that work. As Dana said to me once, “I don’t get paid to do that…Someone in academia, that’s part of their job. I have to figure out when I can do that extra work that I’m not getting paid for.” So don’t assume non-affiliated people can easily act on suggestions and recommendations you offer. And be clear about when it’s just a casual suggestion and when it’s strong recommendation.
Finally, I need to acknowledge Dana’s bravery. She has been frank with me about when she was frustrated, angry, struggling with something or someone, happy about a result. She has done this as an un-affiliated person with relatively little formal power in the relationships that were enabling her to do the work about which she was passionate. It’s making for a better experience and, I hope, a better project.
(Below is Dana’s untouched response to the above. Her own post reflecting on this process is available here, along with my untouched response to her comments.)
I appreciate Paul’s reflection on our mediated conversation, and think he articulated much of our discussion accurately.
One thing I think is apparent to me now is that this grant feels like a four-way process – it involves me, RWJF, ASU, and my co-PI’s. It has often felt like the co-PI’s are the fourth element in this relationship. I am also new to working with these co-PI’s, and so therefore there are also challenges in working with people established in the system who are attempting to support and help this work. There are a lot of benefits (such as enabling me to get this grant by being tied to an academic institution (ASU)), but I also think some of the challenges and dynamics resulting from “having to have” co-PI’s (rather than having them serve as contributors to the work) are worth exploring at a future point, too, in the conversation of how we might design the process to better support individuals and their ideas.
Paul has framed several of our conversations that I would categorize as “hard” as “emotional”. I worried then, and still worry now, about the stigma of having so many emotional or hard conversations that were about relationships and power dynamics and examining the assumptions and infrastructure of the current system. Paul was and is amazingly supportive for having those conversations, and acknowledged early on that he realized they would be a part of our work, but I worry that I was “lucky” with Paul and that may put future patient work at risk if funders feel like there would be “extra work” they’d have to do with patient/independent/unaffiliated grantees. The answer to that is yes there likely is and maybe there should be; but I, like Paul, think it was worth it and made for a better project and better future work. However, I wonder how we might put this in context of the overall value while acknowledging that perhaps the relationships and work look different and require different areas of effort compared to a traditional grant. Like everything else, there are tradeoffs.
Similarly, I think patients/unaffiliated researchers may be looked at as lacking in some areas, such as organizational know-how. I happen to come from a background of working in communications for non-profit health systems, and in my career had evolved from an individual contributor to managing teams, multi-million dollar budgets, and leading internal communications as well as external efforts. As a result, I am deeply trenched in experience for working within complicated political systems and organizations and bureaucracy. I think the challenge for me in this grant work was being fully removed from any organization involved in the work. Therefore, I ended up in this four-way relationship where you have to learn multiple organizational dynamics and build new relationships on all fronts, all while doing a new role (being PI) for the first time without having any real, articulated power in any of those systems…and all while paying attention to being the “first” and knowing the decisions about what battles to fight and what to focus on will help or hurt other unaffiliated and patient researchers in the future. It’s less about me being “unknowledgeable” and more about being “currently un-tethered” to an organization. On the flip side, another researcher may be tethered to an organization but be newer to their career/working in this space. My knowledge and past experiences enable me to see how the process is so hard currently to someone with my expertise, and recognize it would be even harder and in some cases insurmountable to many other potential patient and unaffiliated researchers who don’t share my background – and that’s something we should pay attention to and use as input to build better processes for the future.
I am very appreciative of Paul’s work with me on this grant, and thankful to RWJF for being brave as an organization to fund this work and these new ways of working. Thank you to the many individuals at RWJF who have supported our work behind the scenes!
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