As I mentioned in April, this year I am largely focussing on a review of how having agency and a sense of belonging relate to health. I’ve just completed my report and thought I’d write an update, especially for those of you that have written to me to ask what I am working on.
We ended up focussing on community agency (rather than individual and societal) and dropping belonging for the time-being. The first decision relates to the supporter’s theory of change. It’s The California Endowment and it believes that health equity requires strengthening the fabric of democracy by investing in the social, economic, and political power of residents. This relates to the idea of collective power – hence the focus on community agency.
With regards to belonging, we didn’t find the bio-medical literature very useful. Most of the work seems to relate to social isolation and its impact on health. That matters, of course (and matters all the more in our time of COVID-19-induced ‘social distancing’ and ‘quarantines’) but it’s not quite what the Endowment had in mind. Its view is that belonging is effectively the opposite of (or an antidote to) racism. To some extent this overlaps with the view of john a powell* of the Othering & Belonging Institute who says that belonging is not just about inclusion but about having the right to shape the thing that you’re included in.
All in all, we realised that belonging was a difficult topic to get our arms around and that the bio-medical literature may not yield much of value. We may come back to it but, as I said, we decided to focus on community agency for now.
The evidence for community agency in the bio-medical literature is a mess. It’s a mess for three reasons:
- Although there is a lot of work involving community engagement/participation, the shape of the work differs significantly, from merely informing people to handing them complete control
- Projects at different ends of the spectrum – from mere informing to handing over complete control – are often described with the same terms, which makes it difficult to bring the findings of different articles together
- Research into the value of community engagement/participation is hard to do well (and from what I can tell, much of it isn’t well-funded)
In a perfect world, reason number three would not be an issue. The idea of community agency would be taken seriously, methodologies would be devised and refined, and research would be adequately funded. However, the world is not perfect and it seems that at the heart of the issue is that research funders are not serious about exploring what it means for communities to have a voice.
Reason two is simply unforgivable. It’s sloppy science. It’s especially galling when you realise that a seminal article on classifying citizen participation was published as far back as 1969. It beggars belief that it – or other, more recent classification systems – are not being routinely used as a foundation for research into the discipline (one of the articles described the discipline as “under-theorised”).
All that said, there is evidence on the role of community agency as a way to improve health and some of it is good. I found 93 research articles from eight well-respected reviews (some of them systematic) and there was an encouraging uniformity to their findings.
Interventions that seek to foster the agency of communities have impact in six broad areas:
- The skills of community members
- The confidence of community members
- The sense of empowerment among community members
- The social fabric between community members
- The sense of collective power among community members
- The level of trust within a community
The first three clearly inter-relate on an individual level. For most people, as their skills increase so does their confidence and their sense of their own power. The fourth and fifth also inter-relate – as the social fabric between people becomes more welcoming so will the sense that people can collectively achieve something.
The sixth – the level of trust within a community – is interesting because in some articles trust went up and in others it went down. There weren’t enough articles to tease this out but it seemed to me that much of it came down to how the community work was conducted – where it was poor, trust decreased; where it was good, trust increased. However, some articles showed that even when the work was conducted well trust suffered, perhaps because the work surfaced latent disquiet amongst residents about the conduct of local agencies.
We’re now going to try to write an article for a high-end medical journal about our findings. We’ll anchor it on some work the Endowment is supporting in some communities in California. The current idea is to talk about the theory of change, illustrate it with some on-the-ground work, and then relate it to the evidence base (the 93 articles). Let’s see if we can get a high-end journal’s attention.
If we’re successful, the article will likely be published mid to late 2021, partly because I am heading into parental leave again around the end of the year and plan to be off for two, perhaps three, months. Whatever happens, my current plan is to take what I have learnt – which currently sits in a whopping 165-page document – and package it into a series of posts that’ll populate my Community & Health newsletter in 2021. I am looking forward to doing that next year.
I’ll end by saying what I said at the end of my last post. I am still here, still working (parental leave excepted), and still very much engaged with the ideas that I mention on my about page and in my perspective. So, do feel free to get in touch.
- * john a powell prefers his name to be spelt all lower case (for reasons that I do not completely understand)
- I am doing this work in partnership with the Insight Center for Community Economic Development and am grateful to Brad Caftel of the Center for overseeing the funding and the myriad other administrative and legal details involved.
1 thought on “The Evidence Linking Community Agency & Health”
As a community based participatory health researcher, I’m concerned that people will confuse your comments on the quality of the research within the field of health with research on engagement that happens outside of health.
Reason 1: Totally agree that the spectrum of community engagement in health research is weighted toward the informing end, you may have seen the Shippee et al review. We also found this bias when trying to do a review of community involvement in diabetes research (Harris, Graue et al https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12935).
Reason 2: Participation is poorly defined in health research because it usually isn’t the main focus of research funding. So articles have very truncated descriptions of the process of engagement and participation (We first noticed this in a review of peer support, where we noted that terms to describe participation and engagement have no common meaning e.g. they are conceptually insecure! We struggled again with a the diabetes review and finally wrote somsething about the problem – article here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5971326/ )
I’m glad that you noted the same things, but for
Reason 3, I think it’s important to distinguish between the quality of engagement/participation research outside of the field of health, and studies funded by health. In non-health fields, a huge amount has been done using variants and updates of the ladder of participation, and developing rigorous methods. So it might be more accurate to say that research into the value of community engagement is hard to do well *when it is funded by health funders*. We’re all extremely frustrated by this. Nina Wallerstein’s team has been able to create a bridge between what we consider rigorous methods and what’s required by national funders, but it is early days. In the International Collaboration for Participatory Health Research, we’re publishing a series of participation papers to raise awareness of the methods, and there is training provided not only by members of ICPHR in different countries but also by UNESCO. It would be great to see a copy of your report when it’s released.