Sunday, July 2, 2023

Another Update / Overview of the "Peer Inclusion in Health Systems" Movement: Why We Need Support

Letter to a mid-level university research director. Dialogue was on themes of funding in research, the role of science in broader social advocacy, and ongoing lived experience (peer) exclusion. 

Conversation Excerpt

Regarding research v advocacy, have you seen this paper yet? Fantastic read: Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production (Botha 2021). Am excited to see science at times slowly come out of its shell (like the March for Science) movement, and in part come to its own realizations of advocacy not being something society tends to support, broadly speaking. Scientific neutrality has an important aspiration but is also impractical and a myth. Acknowledge that there will always be bias. Acknowledge that science exists within and impacts larger society in complex and at times deeply problematic ways. 

And yes, the funding struggle is something I was completely unprepared for and seems astoundingly under-discussed and under-addressed. Both within and beyond research. It exists as a problematic struggle on the axis of time spent hunting for funding in and of itself. And it exists on the axis of absolutely brutal inequality. The scale of that inequality seems profoundly underemphasized, in a way that no words seem up to task of capturing. And there are such low fruit starting solutions out there.

For example, in Minnesota there's an effort in the nonprofit world right now to try and get a Common Grant application widely accepted again. Why write one grant ten different times in ten different formats for the same project? It's ludicrous. One proposal written one time ought to suffice. Could easily be something the research world could adopt. Well, "easily". The social dynamics and politics are hard, but in practical terms it's so incredibly sensible and simple. 

The other thought for you is something I've been calling "Forced Unpaid Advocacy". In research, if you don't get the funds, you move onto something else. Still a massive problem, but it is what it is. In advocacy, there is often no walking away. You can't leave the community you're, by definition, a part of. I've also been calling it the "Limited Power to Walk Away". Technically, you could stop advocating. But if, for example, transgender people stop advocating there is no care on offer for them and that's not a real option. It's a direct health risk and even a death sentence. So, paid or not, the work must go on. 

One example I can share is the work of Marion Davis. And my goodness, look at the work she does on spinal CSF leaks and broader patient advocacy, very often as unpaid labor. It's not a "choice". Not really. Her community is being failed. It's do the unpaid work or remain silent and unhelped/failed. And yet we decide to call that "choice"? What an appalling and oppressive framing of that situation. I'm not sure how to phrase this point better but it's something that ought to be written more eloquently and convincingly than I just did. Work in progress (yet more unpaid and unsupported communication work).

And a last point to conclude this problems and challenges overview is the absolute dearth of funding avenues on offer. This includes reports like the recent NIH Working Group Report on Anti-Ableism (which I've seen no evidence of NIH taking meaningful action on yet, including senior NIH staff directly refusing to engage with our broader peer coalitions). And dozens of reports like Black Funding Denied: Altogether, only 1% of grantmaking from the 25 foundations that we looked at was specifically designated for Black communities, even though a combined 15% of these 25 cities’ populations are Black.

I've myself directly written to groups such as the leadership team at Boston University School of Public Health: Letter to Boston University Asking for Co-Empowered Peer Inclusion in Public Health Research and Support Efforts. Yet they've continually ignored that email campaign. We aren't going to solve racism and ableism overnight. But there is almost zero excuse for individuals like Dean Galea at BUSPH to not foster more active and equitable stakeholder co-development with authentic peer communities. He didn't give a flip that disability rights icon Judy Huemann herself (rest her soul) recommended him working with groups like mine, but was all too happy to look good hosting a webinar with her as a speaker (for no speaker fee either mind you, I'd guess). And it was a great webinar, with great content, but what really came of it? It was performative allyship of the highest order, and it makes me so sad and enraged. 

To end on a high note of sorts, there is a community out there hungering for better. If it could just be given any momentum or support at all, so much could be done. Webinars, articles. Yes, also direct advocacy campaigns. It just needs some empowered group somewhere to finally buy in on the vision and its extremely clear avenue toward better health outcomes. I have development contacts interested in helping (but they need to be paid for their labor). I have skilled advocacy contacts like New Disabled South. There's already models for lived experience inclusion development institutes like University College London's Co-production Collective. For months now I've been getting weekly emails, such as one from a Center for Disease Control research group last week, wanting guidance on how to do better on lived experience inclusion. And I'm absolutely destroying myself trying to be that resource for them. I've made exactly $1,300 in over three years of doing this 5 to 40 hours every single week while suffering through unsupported chronic illness. Note that the CDC made no offer to bring us all in as consultants (and probably is given no budget from on-high to do so, but also are they even asking for such a budget?).

The potential to do something great is there, and yet very accurately still feels miles away and out of reach to build. Happy to keep a conversation going about how to defeat that barrier.


- Peer Voices Network

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This article brought to you by the currently unfunded Peer Voices Network. 

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