Patient-Led Medicalisation and Demedicalisation Processes Through Social Media - An Interdisciplinary Approach, 2022, Froger-Lefebvre

[Dolphin]

https://link.springer.com/chapter/10.1007/978-3-031-05061-9_37

Patient-Led Medicalisation and Demedicalisation Processes Through Social Media - An Interdisciplinary Approach

• Juliette Froger-Lefebvre &
• Julia Tinland

• Conference paper
• First Online: 16 June 2022

• 
  

Part of the Lecture Notes in Computer Science book series (LNCS,volume 13315)

Abstract
Our goal in this interdisciplinary paper is to analyse how groups of individuals have used - and still use - social media in order either to broadcast their claim to an institutional recognition of their status as being sick or, on the contrary, to rid themselves of the sick label that they feel has been unjustifiably imposed on them. « Medicalisation » is the process through which experiences and problems that can be understood as political, social or even religious come to be under the purview of medicine and « demedicalisation » points to how problems previously considered to be medical in nature cease to be so.

The increasing involvement of patients and patient groups on social media threw a wrench in the conceptualisation of medicalisation as a necessarily harmful mechanism from which patients remain the passive victims. Several groups are indeed very active, involved and vocal today on social media regarding the medical status of their own experiences. Though control ultimately remains (mostly) in the hands of medical institutions, their online presence and organisation has had profound social and medical ramifications.

The cases of endometriosis, eating disorders, chronic fatigue and a few others can highlight how the « sick role » is indeed tied to many material, social and symbolic benefits to which several online groups feel entitled. But the « sick role » is also tied with significant disadvantages as it may sometimes become an unfair and stigmatising burden. Implicit or explicit demands for medicalisation and demedicalisation are numerous online: social media have been instrumentalised widely to promote claims for both medicalisation/demedicalisation and to recruit followers internationally. Patients have invested forums, websites, groups and personal profiles on Facebook, Instagram or WhatsApp quite proficiently in order to raise public awareness of these issues and, ultimately, to institutionalise their movements.

In order to explore patient-led medicalization and demedicalisation through social media, we start by introducing sociohistorical and philosophical perspectives on both processes as well as on related movements using social media. Secondly, we present the more detailed case of eating disorders with the French support group Outremangeurs Anonymes (Overeaters Anonymous). Lastly, we analyse the ethical implications of people’s online involvement in medicalisation and demedicalisation processes, especially in light of issues regarding over-medicalisation and under-medicalisation.

Keywords

• Medicalisation
• Demedicalisation
• Patient expertise
• Social media
• Institutionalisation of patient groups

While not all individuals involved in such online movements are considered to be « patients » by medical professionals and institutions, access to or negation of the status and role of « patient » is what is at stake for many of them.

 

[Sean]

the « sick role » is indeed tied to many material, social and symbolic benefits to which several online groups feel entitled.

 

[Snow Leopard]

Patients become involved (become activists) because their needs aren't being met due to existing systems.

Side note, one of the authors also wrote this:

https://link.springer.com/chapter/10.1007/978-3-030-74804-3_5

Personalised Prevention: Increasing or Decreasing Over-Medicalisation, Overdiagnosis and Overtreatment?
Julia Tinland

Part of the Human Perspectives in Health Sciences and Technology book series (HPHST,volume 3)
Abstract

The development of personalised prevention has been followed by rising concerns over over-medicalisation, overdiagnosis and overtreatment. Indeed, it has been said to lead to the discovery of a multitude of small abnormalities of low significance and low predictive validity. Complex diseases are now detected in their earliest stages, even though they might never have negatively impacted a person’s quality of life or lifespan. In such cases, the harm caused to these persons cannot be overlooked. This chapter aims to explore the mechanisms through which personalised prevention could perhaps be used to de-escalate these issues. First, its development takes place in a context where issues of over-medicalisation, overdiagnosis and overtreatment are already prevalent in preventive medicine, meaning that personalisation might potentially be used to reduce the number of people to whom screening and preventive measures are proposed. Secondly, the process of risk stratification encouraged by personalisation offers a more nuanced understanding of risk – from very low to very high – thus enabling de-escalation measures for newly diagnosed people. Lastly, the more radical impact that personalisation and risk stratification could have on nosologies themselves might encourage the implementation of preventive measures that ensure that identified at-risk individuals have access to needed forms of public support. Woven into the development of this chapter is the notion that personalised prevention can bring forth more complex conceptualisations of people’s vulnerability to disease.

 

[alktipping]

the medical industry has never been fit for the purpose of treating sick people .how else is change in a broken system going to come about without patients shining a bright light on medical failures .

 

[FMMM1]

eating disorders

I vaguely recall hearing that genes related to eating disorders had been identified. So, you've been dumped on by your genes and this mob turn up supposedly from the caring professions. If they can't do something useful then why don't they just go away?

I'm minded of contributions from others alerting that anything that refers to

Interdisciplinary Approach

should be treated with scepticism.

we start by introducing sociohistorical and philosophical perspectives on both processes as well as on related movements using social media.

Rather begs the question why? Why not review the evidence base and identify interventions which are supported by objective evidence and e.g. consider whether they are currently used and if they should be applied more generally ---? Not entirely clear that sociohistorical and philosophical perspectives are what ill people are hoping for --- on your way to hospital with a broken limb --- for some sociohistorical and philosophical perspectives?

Excuse the (usual) rant!