Parkinson's disease: Threats and opportunities of patient online discussion forums.

Sabine Bayen, Cassandre Carpentier, Nassir Messaadi

Keywords: Parkinson's disease, online discussion forums, peer communication, self medication, netnography

Background:

People are aging and complex chronic conditions are increasing. At the same time, GPs are facing an increasing media coverage and popularization of health, especially by the internet. The free access to the internet allows chronic ill patients to seek medical information on their own inititative. Furthermore, the internet encourages them to join existing virtual communities to receive peer support through online discussion forums.
Parkinson's disease (PD) is a complex chronic condition affecting all dimensions of the patient's daily life. It is interesting for GPs to explore the patient's authentic real live experience of the disease to meet their real needs.

Research questions:

What do people with Parkinson’s disease and their relatives share and discuss on the most frequently visited online discussion forums?

Method:

A qualitative prospective study according to the method of Netnography, was conducted. Four popular patient online discussion forums with public access were investigated. The web users’ quotes were collected from May 2018 to October 2018. Data analysis and triangulation were performed by two researchers using the Nvivo 12® software.

Results:

In total, 23 online discussion threads were analyzed: 302 messages posted by 70 web surfers, 115 encoded nodes were created. Three user profiles emerged: the leader (21.43%), the expert (14.28%), and the follower (42.86%). The web users shared their unfiltered illness experience between peers. They tried to find alternative therapies and replaced their allopathic medication by questionable dietary supplements without any medical advice. They incited peers to stop their ongoing medication and to replace it.

Conclusions:

Patients express voluntarily their daily experience with PD on internet discussion forums. They are actively looking for a cure of PD. They aim to limit, or to stop their disease evolution, during which they are taking considerable risks for their health, especially when they tend to opt for inappropriate auto-medication, sometimes encouraged by peers.

Points for discussion:

How to find the balance between free discussions between peers and the risk of dissemination of false or partially false medical information?

Would the implementation of trained expert patients to moderate these forums be a barreer or a benefit for the web users?

Do we (GPs) underestimate the risk of virtual communities's influence on the patient's engagement to shared care projects?