The importance of reciprocity and community engagement in research

I was born in the southern part of the United States. When I was going through undergraduate at university, I studied psychology as my primary discipline but was very attracted to sociology. The American education system allowed me to explore other disciplines, so when I studied sociology alongside psychology it was clear it was my preference.

My early research experience was around the study of health inequalities before that term was widely used. One of my first big projects was working for a Medical Anthropologist and Epidemiologist, Professor Claire Sterk. She was the Principal Investigator and also became my mentor. Claire was reaching women in the drug economy at a time of the crack epidemic. We focused on women’s role in the illicit drug use economy at the community level; they were using crack cocaine and primarily supporting themselves through sex trading and other illicit activities.

Claire used mixed methods approaches, which I have adopted throughout my career. We did work in Atlanta on the limitations that women in communities faced in terms of HIV, substance use, mental health, accessing ways to support themselves and take care of their basic needs, such as food and housing.

The work had a profound effect on me. We made the women part of the conversation around the impact of HIV on their mental health. Claire was using participatory approaches before there was even a name for it. She structured the work around reciprocity. We were taking something very valuable from these women in terms of their life stories and experiences, but what were we giving back?

It can’t just be research for research sake. It is about what can we do as a community. What can we offer these women? And what expertise can we respect regarding their lived experience? For me, it has always been about looking at mental health inequalities, race and interpersonal experiences of racism and structural racism. Growing up black in the South, in Atlanta, the impact of civil rights movement was quite strong in terms of what I was interested in and the educational opportunities I had or didn’t have.

When we think about the fight we face now, we are trying to change the narratives and are pointing out the racism and disparities facing black and ethnic minority communities. This takes time. In 1964, they passed the Civil Rights Act in the US, yet I was still being bussed to white schools in the 1980s.

So, we are not talking about quick movement as black and Latino kids are still being bussed today in the US. It is a slow and non-linear process. You can’t focus on this issue as something that will be resolved within your time. That is what has kept me interested in it. Also, looking around and not seeing a lot of black academics in the US, and not having the opportunities to study these issues, was a challenge and motivator throughout my education.

In the late-1970s, was there was a group of black, Native American and Hispanic Sociologists who came together and pushed for funding for a minority fellowship programme to fund PhDs.

Fortunately, the American Sociological Association got joint funding with the National Institute of Mental Health, which led to a national PhD programme of funding for black and minority students.

I was encouraged by my mentor to apply for it. As an undergraduate student, I was either the only the black person in lectures or one of a few. There was this constant feeling that I would not get there, but my mentors kept saying, you will. They encouraged me to stay focused on what I wanted to study and to maintain that focus on inequalities. Most important, when I was awarded the PhD Student Fellowship, I had access to people and resources on a national level.

Although I had a faculty place at Columbia University when I finished my postdoctoral fellowship there, I came over to the UK to set up a research collaboration and ended up staying. I’m so glad I did. The career I’ve had here I couldn’t have had in the US. It has allowed me to focus on urban mental health, health inequalities and providing infrastructure for public engagement.

When I came here, I could see there was so much more work to be done around inequalities, particularly mechanisms like discrimination. There was a lot of work on stigma, your biases and beliefs, but that was where much of the conversation stopped. No one was picking up on the behaviour aspects; that you have discrimination experiences at institutional and interpersonal levels, but you may also witness and anticipate discrimination, resulting in you avoiding places, people and opportunities because you feel you will be discriminated against.

One study that addressed this area was the South East London Community Health Study that I led with my colleague, Professor Matthew Hotopf. It took place in three phases. We reached approximately 1,700 people , aged 16 years and older from over 1,000 households. It was important as national studies are underpowered to look at differences across ethnic groups, particularly black and Asian communities.

Importantly, we take our findings into public spaces. We go into schools, teaching the basics around social and health inequalities, basic research methods and ethics. We also help people set their own priorities for their communities and we worked with schools and community organisations through HERON (Health Inequalities Research Network).

I’m currently funded by the Wellcome Trust to deliver a programme of work in the NHS focused on tackling inequalities and discrimination experiences in health services (TIDES study), as we don’t have a lot of information on health practitioners generating and perpetuating inequalities. We sometimes forget the people working in our health system are also impacted by inequalities. Health care practitioners experience adversity such as bullying, harassment and discrimination within the NHS as well as in their communities and it strongly impacts their mental health. We want to better understand how inequalities are produced and reproduced.

My colleagues and I at King’s College London are also now launching the Centre for Society and Mental Health funded by the Economic and Social Research Council. It is the first interdisciplinary research centre in the UK to bring together world-leading expertise and research on the impact of social transformations on mental health. It focuses on young people, communities and work and welfare, three areas where social, cultural and economic transformations have produced substantial challenges for mental health.

It is a huge undertaking and I think we are incredibly ambitious in what we proposed. The research must be carried out with public engagement and service user input.

In communities, we are seeing an incremental change in people being able to talk about mental health, but there is still so much stigma in the black community around discussing mental health, and the intergenerational trauma we carry. For many of us, there has always been a sense that we are a product of our ancestors being resilient. Although I don’t like the term, it does get the point across. We carry all of that trauma with us alongside our own experiences.

For my research group, everything we do is around reciprocity and sustainability as we work in the community. It has been heart-breaking to see how many grassroots organisations have disappeared due to funding cuts over the past 10 years. Public engagement and community engagement isn’t an add on, it is integral to everything we do.

Even when I didn’t know it, I have been working up to this point where we now have these incredible opportunities to be of service through research. Fortunately, many of us involved in it feel this way.

Professor Stephani Hatch was speaking to Joy Francis, Co-Director of Synergi.

Stephani Hatch is a Professor of Sociology and Epidemiology at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London. You can read her full bio here.