Grassroots program development

In public health school, there is rightly a lot of chatter about community health and community engagement. In the first year of my MPH, one of our assignments was to volunteer with a community organization for MLK Jr. Day/weekend. Of all of the “helping” professions, I do believe public health is the closest to the ground in terms of involving community, whether it’s through Community Health Assessments, facilitated community health committees or through community education. In two of my last three leadership roles, I was able to go beyond the bounds of these standard practices to help develop programs that, in many ways, belonged to the community. The first was a suite of programs for people with substance use disorder, including a Syringe Services program, Post-Overdose Response Team, and a re-entry program focused on harm reduction and social determinants of health. The second is a group of programs I began at Blue Ridge Pride, starting with a basic community education course, and expanding to a Queer Resource Center and Counseling program.

As I reflect back on the success of these initiatives, one process stands out as a necessary ingredient, and that is this idea of grassroots program development. In other words, in each instance, I didn’t walk in as an expert trying to get others to see what was needed. Rather, I convened a group of people with lived experience (myself included) and asked, “How can we be helpful?” There is a facilitation framework tool I really like called Results Based Accountability, where you start with the vision-what would life look like for x group if all was well and then proceed to form programs and goals around that end result. When utilizing that process, it is still critically important to have the conversations not only include people with lived experience, but for them to mainly be made up of people with that experience. How, as a facilitator and program developer/manager can you ensure it’s not just one or two loud voices leading the charge, but the entire community? It may sound simple, but it works: invite more people to the table.

One great example I’ll give is the CARE Team of the local health department which, when I walked in, had several “experts” around the table, but very few people with lived experience. Those who did have lived experience were, by and large, the pirhannas of the recovery world-those folks who owned private for-profit treatment centers or sober living homes; these folks follow the money and so knew where to show up. Maybe that’s why I made my way over to Haywood St. Respite where hands do the work of feeding people to recruit those peer supports to our efforts. By the end of my time with the committee, it was comprised of over 3/4 of people with lived experience, most of them who worked in the nonprofit realm challenging piranhas, and each of them carrying worlds of experience beyond recovery or harm reduction. Throughout my time there, I didn’t see myself as above them or with more intelligence simply because I had an MPH; I also didn’t sit back and only listen. I challenged the 12 step idea of rock bottom, I brought in trainings on MAT and sat in rooms with law enforcement asking the hard questions. On the flip side, it wasn’t hard finding other people with advanced education and careers who were also in recovery. That’s the beautiful thing that can happen when we switch from a framework of doing for others to doing with-we find we are more similar than different, and that, in itself, makes the way ahead easier.

You won’t know the other experts, however, until you extend invitations and show up in their worlds, as well. This can be done in a myriad of ways. It can look like ensuring people with lived experience make up a healthy representation on committees and boards all of the way up the nonprofit food chain, to hiring people with lived experience to develop and roll out programs, to tabling at others’ resource fairs with the sole aim to build relationships, to having lots of coffee with strangers, to, one of my favorite pathways, community based participatory research. Problems are often easy to spot, but the root cause and solutions can be much more difficult to entangle. This is why, when I clearly saw my LGBTQ+ community suffering post-COVID, I invited a diverse group of queer people in (our Health Equity Committee) to create and disseminate an in-depth health and social determinant of health survey. Before rolling out programs at Pride, I wanted to know not only what people wanted and needed, but how and where. Within a few months, we were able to gather 351 verified responses to over 100 questions. The respondents were as diverse as the individuals on the Health Equity Committee (no surprise there!) and the information gleaned staggering in its scope. I knew many queer people were suffering from depression, for example, but I did not know nearly 3/4 of the people in my community were feeling low and helpless (and this to be clear was pre-Executive Orders against them). I knew a Pride Center could be helpful beyond events, but I wouldn’t have guessed that most LGBTQ+ people wanted nearly any and all health and resource services to either happen at an LGBTQ+ organization or via a private doctor/therapist.

I had been a part of research projects in the past, but what made this one different was not only the creative team behind it and the richness of responses, but how quickly we were able to roll it out and give back information to the community, within just a few months of the last data point gathered. Within one year we had our recommendations for the entire nonprofit and health sectors. In 2021, I pushed for, and was the content expert, on a study of unsheltered homeless post-COVID. The roll out was pretty smooth and quick, even though I was only one of two people with lived experience on the committee. But the hurdles for publication so that we could share the information? First, there was a conference presentation to give the data credence, and then submission editing, and then deciding whose names go in what order, and then revision after revision. After that, we spent at least a year waiting on a potential journal to accept. The study did not publish for three years after the last data points were gathered. By that time, the needs of those unsheltered post-COVID no doubt had changed to one degree or another, and while we were able to share some data discreetly in those three years, mostly the study to me felt lost in time and merely a collection of facts from people who already knew some of what we’d find. There are definitely some topics where scientific rigor, double-blind, randomized, etc. is of the utmost importance; for example, prescription drug trials or exploring the causes of cancer or dementia should be measured studies over years. And there is good reason for our social determinants of health to have some of this information behind them as well. But so many of society’s ills could find solutions much more quickly, particularly in local and regional ways, if community-based participatory research was more common. It does take people with expertise in the process to roll it out, but they should not be the majority of people involved in the process.

The speed at which the LGBTQ+ group was able to retrieve data meant that Pride was able to begin a Counseling program within one month of Hurricane Helene hitting, and another organization expanded its food access to the LGBTQ+ community two months in. Not next year, not 3 years from now; people needed post-disaster counseling and food equity immediately. In addition, by acting with expedience, we were able to garner financial support from The American Red Cross to continue the program. I am not sure how that program is faring since I departed; my hope is that they are continuing to involve people with lived experience in the ongoing program lifecycle process. As far as the programs at the Health Department, all of them but the re-entry program, which got absorbed by another department, not only stand, but have been expanded as the community was thirsty for the type of help only people in recovery knew they needed.

Finally, to truly embrace grassroots program development, one more crucial ingredient is needed, and that is trust. Leaders must not only want to hear from community, but trust the people they bring to the table, at least insofar as the lived experts they are. We don’t need to like everyone to make forward progress, but we do need to trust that people struggling with this or that issue, or living with marginalized identities, know what is best for them at their core. That often is different, depending on the individual and their demographics. The people we invite in may not-like us-have all of the facts, and in those instances, we trust that once they do, they will incorporate that going forward in their own way.