Navigating Privacy and Presentation of Self on Health Discussion Boards Among Individuals with LTCs

[Dolphin]

I read this.
I don't recall anything particularly useful/that I might quote again so not a paper I would particularly recommend reading. However I don't recall any problematic attitudes regarding ME/CFS.

Free full text: http://www.jmir.org/2016/10/e274/

Original Paper
“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

• Ellen Brady1, PhD ;
• Julia Segar1, PhD ;
• Caroline Sanders2, PhD

1Centre for Primary Care, University of Manchester, Manchester, United Kingdom

2NIHR School for Primary Care Research, Manchester Academic Health Sciences Centre, University of Manchester, Manchester, United Kingdom

Corresponding Author:
Ellen Brady, PhD



Centre for Primary Care

University of Manchester

Williamson Building

Oxford Road

Manchester, M13 9PL

United Kingdom

Phone: +44 (0) 161 306 6000

Email: ellen.brady1987 [at] gmail.com

ABSTRACT
Background: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members.

Objective: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions.

Methods: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.

Results: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors.

Conclusions: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

J Med Internet Res 2016;18(10):e274
doi:10.2196/jmir.6019

KEYWORDS

• privacy;
• ethics;
• research ethics;
• informed consent;
• patients;
• social support

 

[ash0787]

As they sort of suggest, its easy to confuse privacy with civility, or rather peoples interests are not necessarily relevant to the topic of CFS/ME, for example I am trying to get Hillary Clinton executed for child abuse, I don't mind saying because I think everyone should know about it, but it doesn't really help us to sort out our disease.

Also as a general rule its fair to 'research' people online, trace their accounts etc, use it to criticize or ridicule them etc, but the same thing may happen in reverse so its a double edged sword.

 

[RogerBlack]

It varies dramatically indeed.
I have online persona that vary from 'skilled engineer' (Which I try to use what learning I have achieved carefully to help others) to 'normal person' that doesn't talk about their work, to significantly disabled and housebound.

I almost don't care about privacy on my illness, other than as it may be read by those determining my eligibility for benefits.

I am not required to tell the truth, or explain how long doing certain things took me online, or explain how this was the only thing of significance I've done in the past 6 months.

Casual reading by someone trying to work out my level of disability could rapidly lead them to the conclusion that I'm not significantly disabled, as I'm representing things I wish to do but have no hope as realistic short-term plans, things I planned in detail as actually finished, ...

On the other hand, I would be quite happy releasing my data to efforts like the personal genome project.
http://www.personalgenomes.org/ Which is a project to release whole genomes and other data of people along with their information.