Non-participation and Disengagement in Personalised Medicine: Patients’ Accounts and Methodological Reflections
1The University of Leeds; 2The University of Edinburgh
The participatory turn in healthcare encourages patients’ and the public’s engagement with research and trials, so, in turn, has the potential to exclude rich accounts of non-participation and disengagement. Drawing on an ethnographic study of cancer patienthood in the genomics era in the UK, we explore non-participation, rejection, exclusion and reservations concerning genomic medicine in the public sphere as expressed by a range of social actors and groups. We capture the particular social and cultural contexts in which disengagement and resistance are generated. Refusal or inabilities to engage with genomic medicine can result from contested priorities, such as health equality or preventive medicine and a commitment to other forms of care. Not every patient can or wants to craft their own treatment pathways, and we reflect on what it means to opt-out, be excluded or feel left behind by ’personalised’ forms of care. We argue that these practices present an important counterpoint to the dominant tropes of personalisation as enhanced care by virtue of more precise health information. We suggest that healthcare practices in the genomic era involve other kinds of care and personalisation which need to be incorporated into scholarly engagement with biomedical innovation. We also reflect on the extent to which our research methodology and ethnographic practice have contributed to these inclusions/exclusions and silencing of particular voices, experiences and encounters in our research as discussed in relation to the wider context and constraints of the NHS ethical review process in the UK.
Media and Multiple Sclerosis. Role of Mainstream Media And Social Media For Awareness, Storytelling And Care
1University of Rome Tor Vergata, Italy; 2University of Cagliari, Italy; 3Goverment University College, Pakistan
The paper presents the results of a comparative research between Italy and Pakistan on the role that social media and the mainstream media can have in people with Multiple Sclerosis highlighting the cultural differences and homogeneities and socio-economic context related to the disease. In particular, you will investigate: a) what MS storytelling is told by the mainstream media (Peruzzi, Volterrani 2016) and what improves in the awareness of people with MS , 3) the impact of open and closed communities built ad hoc and participated in social media on people with MS (Volterrani, 2018) for the improvement of care and specialized medical / patient relationships, 4) analysis of the role of the media and social media in the prevention of some of the most common problems among people with Multiple Sclerosis (Volterrani, 2017).
The methodology of the research utilized the use of in-depth qualitative interviews with Italian and Pakistani women with Multiple Sclerosis placed respectively in the Punjab region and in the Sicily region and an online participant observation analysis in the open and closed communities on the MS in Italy and Pakistan
Peruzzi G. Volterrani A. (2016), La comunicazione sociale, Laterza Roma
Volterrani A., (2017), From perception to change. A model for prevention communication, Proceedings of the 3rd World conference on Media and Mass Communication, vol. 3, pp. 82-90
Volterrani A. (2018), Participation and Communication in the Time of Social Media: A Chimera or an Opportunity, Sociology Study, May 2018, Vol. 8, No. 5, 213‐219, doi: 10.17265/2159‐5526/2018.05.002
Risking Your Life: Gambling Trajectories and Health And Social Consequences In Italy
1Eclectica snc, Italy; 2ASL TO3, Piedmont
Gambling is a growing phenomenon in Italy. It jeopardises family resources and social relationships and threatens mental health of problem gamblers, increasing social and health inequalities. Moreover, it is associated with a high degree of perceived stigma, which seems to prevent gamblers to access treatment. Most of national studies, however, are large scale surveys, unable to represent meanings and motivations of players, as well as disentangle complex issues such as cultural, social, economic and political factors boosting the risk of negative consequences of gambling.
The paper produces the findings of a qualitative study, based on 62 in-depth interviews to recreational and problem gamblers.
The main aim of the study is to analyse gambling trajectories and to identify both risk and protective factors related to problem gambling and barriers to addiction services. The focus on patterns of behaviours is useful to highlight the role of structural factors, such as economic issues, gambling supply and regulation. The latter includes national and local formal rules, in particular the recent regional law aimed at reducing the number of electronic gambling machines (EGM). Risk perception and significant life events explain the variability of gambling careers, but the interviews suggest that the external factors such as gambling market strategy and labour market conditions impact on trajectories, producing specific pathways. The boundaries between addiction and recreational gambling are blurred, since it is a complex and fluid behaviour, with non linear trajectories.
Between The Private And The Public: Discursive Strategies Of Epistemic Communities, Communities Of Practice And Interest Groups In Search Of A Better Position In The Polish Healthcare
Institute of Sociology, Jagiellonian University in Krakow, Poland
The healthcare field could be perceived as a space of competition between various actors fighting for power and positions. In the last years, we could observe the attempts of emancipation of actors occupying marginal or dominated positions, who tried to undermine the most basic rules governing the healthcare field. We will use the concept of three types of discursive formations – epistemic communities, communities of practice and interest groups – in order to present an analysis of different discursive strategies and goals of such dominated actors, observed in the Polish healthcare field.
Our study encompassed three distinct groups in the time of their most intensified activities: resident doctors in the midst of their protest for increase in wages and improvement of health services; potential users and supporters of medical marihuana fighting for its legalization; and the anti-vaccination movement and its climax with the bill aimed at abolition of compulsory vaccinations for children. We will look at these groups through the lens of their discursive strategies, including public visibility of their discourse, types of knowledge they produce, resources they use and the way they validate themselves or try to be legitimized. Using data gathered in our discourse analysis, we will show the dynamics of these three groups, proving the empirical usefulness of the analytical distinction between epistemic communities, communities of practice and interest groups.