Research for the people, by the people
Ideas for democratizing science
The research-industrial complex is a mess. Many are troubled about the recent cuts to the NIH and other federal and university research bodies. When the dust clears, it’ll be time to envision new ways of funding research to respond to everyday people’s priorities.
Meanwhile, in primary care land, much is business as usual. We’ve been underfunded and overworked for a long time, so if that’s you now, welcome to the club! Primary care gets 50% of outpatient visits but less than 5% of funding, an order of magnitude less than the public expects (abysmal stats here). So, most primary care doctors, especially the more independent-minded, have zero skin in the game for preserving the current research system. This situation gives us some perspective for reimagining what democratic, patient-centered research could look like.
Even once I finish family med training, I’ll keep low-budget research lessons in mind as I go on to pursue clinical trials and further training in addiction med. These lessons for a no-name budget researcher could apply to any scientists or policy makers stewarding community partners’ and taxpayers’ money. Here are three, each drawing from a barely-funded article I authored or co-first authored with friends the past couple years.
1. Local and citizen science are underrated resources.
We need more locally-run research. Local clinicians and community members become invested in study results when they get the chance to contribute data. With public health topics like food security, mental illness, viruses and other disease modeling, and more, empowering members of the community to collect data can build trust in public health efforts. This benefit is in line with the principle of subsidiarity.
Remember those nature walks and visits to the science museums as a kid, when the docents talked about citizen science? That’s actually a thing researchers can use. In our study in North Philly, we partnered with churches, interpreters, and health professions students to collect data on food insecurity, or not having enough available food. The study was run through a local federally qualified health center (Esperanza) that could use the results with patients and other local organizations. The study provided a view of food insecurity prevalence (37% food insecure!) and risk factors in the North Philly area where Esperanza was located. This area had high opioid use and other social factors contributing to a different food insecurity profile than is the case nationally.
Much of the gap between public health researchers and the public could be bridged if the local community and clinicians on the ground contributed to public health messaging. Public health will in turn get more accurate, locally actionable data.
2. Get iterative feedback from patients and end users.
Feedback gives a better idea of whether something works at a small scale before you invest at a larger scale. In design, the end user gives feedback at all stages: statement of the problem, ideation, prototyping, and refining. In traditional research, there are also opportunities for the study population to give feedback: at study design, pilot study, randomized clinical trial, and multisite randomized clinical trial (and their counterparts in basic sciences).
In design and research, lack of feedback creates problems with demand and buy-in for the finished result. In various missions and public health trips, I’ve observed development workers from orgs like USAID (RIP) and Gates Foundation et al complaining that local leaders weren’t putting effort into the orgs’ development goals (read: regime change and/or cultural imperialism). During an internship in Kenya, foreign workers decided to build contraception clinics. They got frustrated that local leaders, who hadn’t been involved in the decision, were letting the facilities deteriorate instead of doing maintenance. Zero feedback and zero buy-in meant that the social programmers were not only too obvious but also incompetent. In contrast, iterative feedback incorporates the social principle of solidarity.
Unresponsiveness to market and public desire also characterizes much research today. Some important topics may be over normal people’s heads. But, there also are many topics of great importance to the public that aren’t funded because they’re uninteresting to pharmaceutical companies and the food industry: some include restorative reproductive medicine, regenerative agriculture, and phone and porn addiction. Meanwhile, I can almost guarantee there was zero public request for the puppy-parasite study (NIH grant R21AI130485) or the even more gruesome study growing human fetal scalps on mice (NIH/NIAID R21AI135412).
For the below project, we partnered with architects and community representatives to design South Philly’s first immigrant and refugee clinic. Community feedback introduced new ideas into the project including consultation rooms and the multipurpose gallery. It was a great joy seeing the project start and finally seeing the first patients in the space.
3. Crowdsource ideas and funding whenever possible.
Crowdsourcing has had big impacts in business and nonprofits, but it hasn’t yet been tried at scale for research. It would be a great way to democratize the research process and get the public involved in studies they actually want done. Practically speaking, we also need alternative funding sources if cuts persist. Democratizing research could also happen through state funded rather than federally funded projects, allowing a kind of federalist vision of science (an idea from other physicians). More grassroots or state-level funding of projects could encourage competition and innovation while supporting the social principle of participation.
For this project, we worked with another federally qualified health center to make a clinical decision tool to treat opioid addiction. This clinical algorithm is the first to include injectable buprenorphine, a drug that blocks opioids for a month and reduces cravings. Patients and community members provided ideas when developing the algorithm, since a big part of its effectiveness depends on whether patients will actually be willing to take the medication. The diverse input the project received made me think of crowdsourcing as a solution for continued scientific funding and innovation.
This post was spur of the moment since I heard the Winged Ox Forum in Philly is having a discussion on research agendas tonight! Since I can’t be there in person, I imagined this as my contribution to the discussion. I also wanted to recap some of the research I’d done the past couple years, so this was a good chance to do it. Thanks to the friends who worked on these projects, including Eric Fung, my go-to biostatistician for two of these papers! Please congratulate Eric on his recent acceptance (again) to Harvard, this time for his PhD, and consider him for any epidemiology work.
Anyone interested in the ongoing discussions in Philly, please email jperezbenzo@collegiuminstitute.org and ask about Winged Ox.
Thought this was an excellent post, thanks Brandon!