Small steps towards the big goal of inclusion

Build solid relationships. Focus on slow, caring science.

Some of the insights that stayed with me from the Zoom calls on making our daily research practice more inclusive. The conversations were so rich (thanks to all 79 participants!) that I’ve summarized them in two parts:

  1. A summary of the presentation on inclusion in trauma research and clinical practice guidelines (published here)
  2. A summary of insights and resources shared (this post).

The starting point was our analysis of children’s voice and cultural representation in traumatic stress treatment guidelines. We found a strong adult-centered, white western lens.

The lack of inclusion is pervasive throughout research fields. So in the two Zoom sessions, we brainstormed tangible next steps for anyone doing research with humans. Obviously, the below is not an exhaustive list, but hopefully a good menu with suggestions for 2021.

We mostly talked about lack of cultural representation and racism, so the suggestions are geared towards that aspect of improving inclusion. But other topics came up as well. Including people with lived experience. Children as co-researchers. Addressing the still problematic gender gap in academia Supporting scholars from the LGBTQIA+ community. Shifting judgements about people from rural communities and low-SES backgrounds. The importance of intersectionality in everything we do.  

And even though we talked about small, feasible steps, it was clear that we want to take a long view: the last thing we want to do is something tokenistic. So planning ahead and slowing down in order to do things really right underpin everything.

Here are some of the specific things we can do:

Educate ourselves. There is plenty of material available, including this webinar on  the anti-racist imperative for public health data and this article on racism and publishing on health inequalities. High on my list is this book on decolonizing methodologies by Maori Professor Linda Tuhiwai Smith.

Search actively for & cite literature written by scholars from underrepresented groups. There are tools to help with this, for example this list of authors of color in social/personality psychology. If you know similar lists for other fields, please share in the comments! Again, this should not be tokenistic: properly read the work and let it inform your thinking and writing. Also, our systematic reviews should assess to what extent the body of work reviewed is inclusive.

Invite speakers from underrepresented groups in a way that works for them. The most well-known scholars from underrepresented groups are overburdened with requests. Search further than that. They may be happy to suggest up- and coming speakers. Another solution is using videos. In this year’s Africa Science Leadership Programme (never a shortage of inspiring speakers, but we wanted to give additional materials) we shared this amazing talk by Chimamanda Ngozi Adichie on the danger of a single story.

Stop talking about ‘hard to reach’ communities but connect with them; we often have unrealistic and unhelpful expectations of what it means to build relationships and trust in the context of research with underrepresented groups. “Really struggling to engage participants” is an oft-heard complaint by white/privileged/majority researchers. In this panel session on racism in mental health, one of the experts suggests (paraphrased): If you don’t have any contact with the community you study, how can you expect them to participate?

He had no issues with recruiting racial minority participants, because he had plenty of connection with the community he was studying. I’ve seen this in action many times, such as this fabulous work with Somali youth in the USA, and it was a key factor in the success of our study with young people bereaved by domestic homicide in the Netherlands. We had worked with many families long before we started the research; they knew we cared. One of the participants in our Zoom session said “I think it has to start with us genuinely assessing whether or not we are actually worthy of trust.”

Set up a community advisory board: not for one project but for the broader topic. An engaged community advisory board can provide essential input on design, recruitment methods, interpretation of analyses, any tools or products in development, and dissemination plans. An effective board needs time though. For example, children can be very effective advisors once they understand how research works.

Setting up a community advisory board after a project has been designed and funded has a high risk of failure. Much better is to set it up as soon as we know the broad topic of our work. That way we can search widely for members, and have the continuity of the same board involved in multiple projects. Even within a PhD this can be done; we often already know early on which community we’d like to work with.

Some institutions host “community-driven research days” – focusing on research ideas from community groups who can come to find research partners. This can also be done on a smaller scale; we can organize brainstorm sessions with our existing community partners about what they find important; what they want on the research agenda.

Properly compensate speakers, consultants and participants from underrepresented backgrounds. Invite community consultants to be co-authors on publications (and again ensure they have a real say). See also this framework for involvement developed by family violence experts by experience.

Think through our methods. How might the identity of an interviewer influence the responses of participants? We heard a great example of young people being involved as co-researchers in a project on youth restraint in custody. Are our study exclusion criteria absolutely necessary? Are we doing all that we can to make our project accessible for potential participants? My personal reflection is that we often give up too easily. In the Ear for Recovery study, I excluded families who didn’t speak English at home since I didn’t know how to deal with multiple languages on my shoestring budget. Now I would have collected the data and found a way – slower maybe, but I’d have figured something out.  

Give back to participants and communities. Paying them adequately for their time was mentioned above already but also following up with the research results through newsletters, practical tools and community events are important. The community advisory board can give insight into what would be most helpful.

Support (fellow) PhD students and ECRs embarking on this journey: there are real conflicts of interest when doing research with underrepresented communities (locally or even in other countries). For example, the need to be a first author for thesis and career progression, the lack of official funding for community engagement while coming from a privileged background, or the need to build up a team very quickly. Talking about this with colleagues and mentors can help: there are options such as shared first authorship, having supervisors advocating for PhD students who opt for second authorship regarding thesis requirements, fundraising for community engagement, getting advice on potential collaborators, etc.    

Support diverse role models. Seeing diversity in senior positions is so important for the next generation.  

Use teaching materials that are much more diverse, with respect to authors, content and visuals. And advocate for research methods subjects to address inclusion as an explicit topic.

Look for clever ways to use the current evidence base. We may be able to focus on under-represented groups by pooling data from multiple studies. This avoids additional burden but can strengthen knowledge, if done ethically (see e.g. the PACT child trauma data archive, and the CARE principles for Indigenous data governance).

Acknowledge Country. This is common practice in some contexts but not others: to acknowledge the traditional custodians of the land. See this is powerful TEDx talk by Yuin man Jade Kennedy (watch it until the end). In countries that have colonized outside of their borders, we may want to acknowledge that instead. One direct result of our Zoom sessions was adding my acknowledgement of Country to this blog (I live and work on Wurundjeri land); I suddenly realized the gap.   

Raise this issue of (lack of) inclusion as often as we can. Let’s actively discuss it with colleagues, practitioners, friends. In our smaller research teams we can discuss this in more depth: what does it mean for us to be inclusive of all diversity? Where are we racist and what can we do about it? What aspects of diversity do we actively look out for, and which ones are we inadvertently ignoring? What can we do about that?

Diversify our own network. For me the Global Young Academy has been life-changing (I’m not exaggerating 🙂 ): it meant making close friends with scholars from around the world and starting new endeavors together, including the Africa and ASEAN Science Leadership Programmes. Many of our professional societies are dominated by white, male, able-bodied, privileged scholars from a small number of high-income countries. Don’t disengage but do seek out other groups as well, for example within the Open Science community (again, please do share suggestions in the comments!).

Get engaged in addressing the structural problems. There are of course so many structural issues that need to be addressed. Our ‘merit-based’ academic system is far from inclusive. We can put our weight behind changes in funding, university entry, and selection and promotion criteria, to name a few. This fabulous paper by Aboriginal women Tynan and Bishop about the need for ‘refusal’ was an eye-opener for me.

Thanks again for the many great reflections and suggestions, and I’m looking forward to continuing the conversation in the new year.

I hope you all get a break in the next few weeks, with time to re-charge and re-connect despite difficult circumstances in many places. Wishing you a good start to 2021, take care!

3 thoughts on “Small steps towards the big goal of inclusion

  1. Eva,

    I’m so glad to see your dedication and perseverance for this much overlooked aspect of community health.

    I felt strongly that the missing element of disaster and aid response was exactly the solution that was needed to mitigate post-trauma… namely, a people’s voice.

    I set myself to design a platform for citizens to be the focus of all energies, and to facilitate behaviors that are helpful, essentially making the local and national governance, “customers” of citizens’  collective To-Do list. Turns out, it’s very simple in structure (everything is a Need or a Resource), but my design relies upon Blockchain technologies that have just recently reached maturity.

    My design assumes that governance and aid will be more interested in high quality and granular data, than they will be interested in obtaining and warehousing it. In terms of implementation, disaster is the exact time to show up with an amazing logistics support tool.

    When I swoop in, and offer a local population the means to make their individual and collective voices be heard, to interact and express needs with dignity, and to be the leader in determining one’s own life – on any technology that is available…. it won’t require legislation to implement. If it works, people will use it. I made it to work best in crises, so it handles everything else easily. It also approaches old problems like forced migration in a novel way that assures dignified interactions before physicallly meeting.

    More importantly.. the system records and tracks everything that works, creating a relevancy score for everything you interact with – and building a network of efficacy that can be shared, and used for peer verification within the system.

    I’m writing you because such a framework would make the issues around inclusivity disappear completely. My system allows citizens to monetize their personal data, while protecting privacy. The system is built to handle inputs and connections from citizens without any single overarching authority, just a set of rules involving interactions and anonymity. Therefore, a personal information AI ‘broker’ is able to negotiate the exchange of details for value of some sort at the micro scale. Ownership of the self. That heals trauma.

    To run a study does not require ownership of identity, just verification of authenticity of inputs. To connect the citizen’s inputs to a result for their benefit produces healing and assures engaged democratic behavior.

    The same mechanism researchers would use for anonymization and analytics, is how Public servants are monitored and kept accountable in terms of their responsiveness to the To-Do list being streamed to them by citizens.

    What I’m proposing is sort of on par with saying let’s all agree to make blocks that fit Lego brand toys, and I want to make the big flat green sheets that lets everyone start equally, yet shows emergent behavior in many dimensions.

    My “Has/Needs” approach, that so far remains novel in its simplicity, firmly stands on the premise that every individual is their own primary stakeholder, and that Providing value is as important to the self as receiving it.

    I hope this is not a confusing letter, but I see a huge need for the ‘empowerment’ discussion and I have taken it from the theoretical to the practical – times fifteen years now. I want to build this thing that no longer requires rocket scientists, just new perspective.

    I have some investor interest, and some very notable advisors, but I’m not a ‘networker’ per se. I just spend a lot of time thinking about this specific issue and watching the technologies converge.

    Very kind regards,

    Om Goeckermann

  2. Dear Eva,

    here is Agnes from Germany. We collaborated on a paper at the ESTSS conference, do you remember? Listen, I got a request from Frontiers of Psychiatry to edit a special edition on a topic which would be free to decide, and I was thinking: perhaps you would be interested to host a special topic on trauma together with me.

    In case that you are interested and have time for a brief chat, give me a sign.

    Kindest regards from one of your followers! Agnes

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