The Medical Scepticism Project
By Paul Addae and Shaun Danquah
In the aftermath of the height of the COVID-19 pandemic and following global race relations issues brought to the fore with the brutal killing of George Floyd, The Social Innovation Partnership, along with its community research team (Centric), identified an interesting nuance from our research project on COVID insights. Alongside the distrust of institutions that persists among many BME communities, healthcare and medical scepticism was also evident.
After discussions with Impact on Urban Health, we embarked on an ambitious exploration into medical scepticism, focusing on healthcare distrust among diverse black and minority communities in South London. We hypothesise that this focus may serve as a basis for fresh and novel health outreach initiatives across the urban locale.
For the interview research of this project, our Community Research team interviewed 120 interviewees, each invited to take part in a semi-structured interview to delve further into why such apathy and scepticism is so profound and what could be done to allay such sentiments.
We heard a range of perspectives and experiences, some shocking, many enlightening but all insightful. For the researchers, it was necessary to 'stay present' and 'bear witness' when participants process painful aspects of their lives within a research interaction rather than shutting them down (Carter et al., 2013). This also helps to minimise trauma and feelings of isolation. In this way, the researcher may be able to signpost the participant toward accessing appropriate services.
How was Centric able to do this?
In terms of how this was achieved, the community researchers harnessed their familiarity with the urban ecology to engage their social networks. We then trained and upskilled the local community researchers, thereby creating capacity and capability for the local community. The community researchers then went out into the field, utilising their unique accessibility, credibility and positionality in settings hitherto quite impenetrable to outside researchers at this time. Such disconnect is based on the black experience wherein general feelings towards institutions had led to distrust, weariness, cynicism and research fatigue. Apathy has been present for many decades in these conurbations as systems have been viewed as not being equitable towards communities.
However, for this topic, this was no simple feat. We encountered a fair degree of research weariness from some quarters of the community. Yet due to the rapport which the community researchers have in the locale, coupled with the trust they exude, traction was gained. Participants became more comfortable in discussing their healthcare experiences in what was, for some, quite therapeutic. This resulted in some of the weariest individuals contributing much more to the research and putting forward other suggested ideas and participants. This action, in and of itself, may serve as an important approach when looking at processes and initiatives to restore trust in healthcare. Our research identified seven key themes derived from the interviews, from which we developed a package to present to institutions:
1. Participants feel the effects of tight NHS budgets and overworked staff through GP and nurses' perceived lack of time, care and empathy.
2. Participants link traumatic experiences in the hospital to feelings of disempowerment, and a lack of adequate recourse reduces their trust in the system.
3. Women's poor experiences with maternity and reproductive services affect their trust in the healthcare system.
4. Many participants doubt their GPs effectiveness and prefer accessing specialist or hospital services - though some people trust their GPs more than other healthcare professionals.
5. Multiple participants have taken their health into their own hands through alternative treatments and culturally specific, traditional remedies.
6. Historical mistreatment factors into participants' decision-making when it comes to engagement with healthcare.
7. Most participants recounted specific experiences of outright discrimination in medical settings.
Moreover, based on these themes, we were able to then form 'theme teams' from the community researchers for each insight. These teams will then proceed to delve deeper into the insight. During this process, a strong sense of equity was garnered with the interviewees from the community, which not only developed trust but also co-ownership. This helped to form both sustainability and legacy aspects for the project.
We also developed a social media analysis framework to analyse and deconstruct various forms of social media which were circulating and reflecting medical scepticism. This looked at language, messaging and target audiences and demonstrated the extent to which the discourse was occurring offstage. This has been enjoyable yet has also indicated the extent of institutional disconnect with certain narratives within communities.[1]. We are still developing solutions around social media messaging.
Why was Centric able to do this?
Firstly, due to the diverse make-up of the Centric CR team, a diverse range of participants was pooled together, reflective of the multifaceted social networks of the community researchers. This veritable menagerie of experiences, backgrounds and perspectives cascaded and then coalesced to provide intriguing and penetrating insights which can possibly facilitate fresh approaches for better healthcare practice.
Secondly, based upon our ideation and deep reflection, alongside reviews of the latest available research, we explored the scope for innovative approaches to patient-led restorative practices after traumatic and harmful experiences in healthcare settings. We then found that this was in tandem with what our participants had also alluded to in our focus group on 'Rethinking the NHS'. Alongside our interviews, we ran a series of focus groups that explored different themes.
Repercussions of this research
At present, there is a crisis of 'epistemic trust' (Goldenberg, 2021) as there is distrust regarding the trusted sources of knowledge. This has permeated all areas of society: health, politics, policing, sport, entertainment and popular culture.
Institutional research bodies are often unable to keep up with the pace of emerging nuances within the urban ecology and can also be limited when it comes to reflecting on their role in the reproduction of dynamics of distrust. The medical scepticism nuance is a case in point, demonstrating how we were able to identify this as a growing narrative and theme within the urban space.
Samerski (2019) notes that 'health literacy' is a social practice based on different sources and forms of knowledge co-produced within the framework of social relations. This 'experiential knowledge' (Popay, 2018; Barbarin et al., 2016; Rubenstein, 2015) is an alternative to official and authoritative forms of knowledge from health systems and may contribute to people being capable of making decisions about their health. Experiential knowledge is knowledge acquired from experiences and is valuable when facing situations of uncertainty and adaptation. It is an alternative to expert knowledge and can guide policy responses in situations of high levels of uncertainty, notably in mental health policies.
These experiences can possibly provide a starting point from which to rethink how the NHS can operate going forward in terms of equity, engagement and restorative practices. The interview and focus group research also represents a body of knowledge production, which is highly significant when seeking to understand distrust of healthcare services and medical institutions.
Bibliography
§ Barbarin, A.M., Klasnja, P. and Veinot, T.C. (2016). “Good or bad, ups and downs, and getting better: Use of personal health data for temporal reflection in chronic illness.” International Journal of Medical Informatics, 94, 237-245.
§ Carter, K., Banks, S., Armstrong, A., Kindon, S. and Burkett, I. (2013). “Issues of Disclosure and Intrusion: Ethical Challenges for a Community Researcher.” Ethics and Social Welfare, 7(1), 92-100. Accessed Online April 2021: Full article: Issues of Disclosure and Intrusion: Ethical Challenges for a Community Researcher (tandfonline.com)
§ Goldenberg, M. (2021). Vaccine Hesitancy: Public Trust, Expertise and the War on Science. Pittsburgh, PA: University of Pittsburgh Press.
§ Montesi, M. (2020). “Understanding fake news during the COVID-19 health crisis from the perspective of information behaviour: The case of Spain.” Journal of Librarianship and Information Science. Accessed Online May 2021: (PDF) Understanding fake news during the Covid-19 health crisis from the perspective of information behaviour: The case of Spain (researchgate.net)
§ Popay (2018). “What will it take to get the evidential value of lay knowledge recognised?” International Journal of Public Health, 63, 1013-14.
§ Rubenstein, E.L. (2015). “‘They are always there for me’: The convergence of social support and information in an online breast cancer community.” Journal of the Association for Information Science and Technology, 66(7), 1418-30.
§ Samerski, S. (2019). “Health literacy as a social practice: social and empirical dimensions of knowledge on health and healthcare.” Social Science and Medicine, 226, 1-8.
Washington, H. (2006). Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Doubleday.
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[1] For instance, see the song by a South London-based social media influencer ‘Remeece’, complete with quality sound and visual production, ‘Don’t tek di vaccine’: Remeece - Dont Tek Di Vaccine (Official Music Video) - YouTube