OIISDP

1. Actual versus perceived privacy: The
case of healthcare discussion boards
Ellen Brady
ellen.brady@postgrad.manchester.ac.uk
OII SDP 2014
Supervisors: Dr Caroline Sanders, Dr Julia Segar and Dr Ivaylo Vassilev
Funded by a Medical Research Council Doctoral Training Grant
1

2. Background
2
• Online support groups allow individuals to easily gain
access to relevant information and support from
other patients (Coulson, 2005).
• Benefits include
– lack of geographical or time limitations,
– a diverse mix of individuals,
– a reduction of inhibitions due to anonymity,
– and an ability to read discussions without
participating.
• Hardey (1999) – patients control the content and
flow of the information, rather than health
professionals.

3. Introduction
3
• Forums commonly referred to as publically available
spaces.
• Reid (1996): “manufacture quotable quotes” – non-
disclosure not only just justified but essential.
• Ellwell et al. (2011):
“An online support group was chosen that did not
require subscription or registration in order to access
the messages... messages posted to the computer-
mediated social support group are indeed accessible
to the public... informed consent from the
adolescents in this instance is not required”.

4. However...
4
• The knowledge that words and experiences could be
shared/disseminated could impact on individuals’
posting style or discourage them from posting
(Daker-White et al., 2011).
• Possible that material is considered public by
researchers/ethics boards, but not by participants.
• Also possible that the ‘shared experiences’ of forums
(e.g. the myth of motherhood – Brady & Guerin,
2010) is intended to extend beyond immediate
participants.
• Need to consider actual versus perceived privacy
(AOIR, 2012).

5. Research questions
5
• 1. What are the differences between online and
offline relationships and sources of social support for
a sample of chronically ill individuals with medically
legitimised and medically contested illnesses?
• 2. In the context of contested chronic illnesses, what
unique aspects, if any, does online support offer in
comparison to offline support?
• 3. For chronically ill individuals, how are Internet
forums perceived and experienced as public or
private spaces for seeking and exchanging social
support for illness management?

6. Research questions
6
• 1. What are the differences between online and
offline relationships and sources of social support for
a sample of chronically ill individuals with medically
legitimised and medically contested illnesses?
• 2. In the context of contested chronic illnesses, what
unique aspects, if any, does online support offer in
comparison to offline support?
• 3. For chronically ill individuals, how are Internet
forums perceived and experienced as public or
private spaces for seeking and exchanging social
support for illness management?

7. Method
7
• Semi-structured interviews with participants
recruited from online and offline networks.
– Internet forums, support groups, newsletters, magazines,
email lists.
• 20 individuals with medically contested (ME/CFS)
and 21 medically uncontested (type 1 and type 2
diabetes) chronic illnesses based in the UK.
• Vignettes created from forum data incorporated into
interview schedule.
• Interviews conducted by phone and in person.
• Thematic and narrative analysis.

8. Use of vignettes
8

9. Anonymity
9
• Anonymity online was a pivotal aspect for many
“It would really, really bother me if people found that information, if
by googling my name, it came up with all this information, I would
be devastated really” (Gemma, type 2 diabetes, 31 – 35).
• Degree of anonymity was determined by forum users
“People might think it’s you, but they can’t be sure and usually you
can address all the problem you have without really putting too
much thing that can identify you” (Michelle, ME/CFS, 41 – 45).
• Concerns that the nature of forum usage may lead to
lines between public and private becoming blurred
“People in desperation reach out and other people who’ve been in
this cosy environment, this kind of warm room full of friends sharing
things openly, forgetting that complete strangers can then just look
and read” (Mark, type 1 diabetes, 41 – 45).

10. Anonymity
10
• Anonymity online was a pivotal aspect for many
“It would really, really bother me if people found that information, if
by googling my name, it came up with all this information, I would
be devastated really” (Gemma, type 2 diabetes, 31 – 35).
• Degree of anonymity was determined by forum users
“People might think it’s you, but they can’t be sure and usually you
can address all the problem you have without really putting too
much thing that can identify you” (Michelle, ME/CFS, 41 – 45).
• Concerns that the nature of forum usage may lead to
lines between public and private becoming blurred
“People in desperation reach out and other people who’ve been in
this cosy environment, this kind of warm room full of friends sharing
things openly, forgetting that complete strangers can then just look
and read” (Mark, type 1 diabetes, 41 – 45).

11. Anonymity
11
• Anonymity online was a pivotal aspect for many
“It would really, really bother me if people found that information, if
by googling my name, it came up with all this information, I would
be devastated really” (Gemma, type 2 diabetes, 31 – 35).
• Degree of anonymity was determined by forum users
“People might think it’s you, but they can’t be sure and usually you
can address all the problem you have without really putting too
much thing that can identify you” (Michelle, ME/CFS, 41 – 45).
• Concerns that the nature of forum usage may lead to
lines between public and private becoming blurred
“People in desperation reach out and other people who’ve been in
this cosy environment, this kind of warm room full of friends sharing
things openly, forgetting that complete strangers can then just look
and read” (Mark, type 1 diabetes, 41 – 45).

12. Privacy
12
• Majority were not overly concerned with the level of
privacy on forums
“If you’re talking to people that have got in the same situation as
you I don’t see why it should be an issue to be worried about what
you’re putting down” (Rebecca, ME/CFS, 18 – 25).
• However, many examples of posters who did not
conform to this approach
“I was surprised that people would have put that information in that
domain when you think of who could actually see that and that just
concerned me a bit” (Michael, ME/CFS, 66 – 70).
• Concerns about privacy do not preclude support
seeking
“Even if people don’t feel comfortable with signing up themselves,
they can still read about it and they can still help themselves by
reading” (Gemma, type 2 diabetes, 31 – 35).

13. Privacy
13
• Majority were not overly concerned with the level of
privacy on forums
“If you’re talking to people that have got in the same situation as
you I don’t see why it should be an issue to be worried about what
you’re putting down” (Rebecca, ME/CFS, 18 – 25).
• However, many examples of posters who did not
conform to this approach
“I was surprised that people would have put that information in that
domain when you think of who could actually see that and that just
concerned me a bit” (Michael, ME/CFS, 66 – 70).
• Concerns about privacy do not preclude support
seeking
“Even if people don’t feel comfortable with signing up themselves,
they can still read about it and they can still help themselves by
reading” (Gemma, type 2 diabetes, 31 – 35).

14. Privacy
14
• Majority were not overly concerned with the level of
privacy on forums
“If you’re talking to people that have got in the same situation as
you I don’t see why it should be an issue to be worried about what
you’re putting down” (Rebecca, ME/CFS, 18 – 25).
• However, many examples of posters who did not
conform to this approach
“I was surprised that people would have put that information in that
domain when you think of who could actually see that and that just
concerned me a bit” (Michael, ME/CFS, 66 – 70).
• Concerns about privacy do not preclude support
seeking
“Even if people don’t feel comfortable with signing up themselves,
they can still read about it and they can still help themselves by
reading” (Gemma, type 2 diabetes, 31 – 35).

15. Privacy
15
• Interviewees described filtering what they shared
and where they shared it
“I just didn't feel I could expose that kind of thing to the internet.
That was too personal, too vulnerable, especially when we were in
the middle of it” (Louise, type 1 diabetes, 31 – 35).
• Value of sharing information with other patients and
healthcare professionals
“I’ve never felt the need to, in fact probably the contrary, I would be
trying to be as articulate as I could to get it across to people what
it’s really like” (Joan, ME/CFS 56 – 60).
• Concepts of audiences typically extended outside
actively participating in the forum – but some
exceptions.

16. Privacy
16
• Interviewees described filtering what they shared
and where they shared it
“I just didn't feel I could expose that kind of thing to the internet.
That was too personal, too vulnerable, especially when we were in
the middle of it” (Louise, type 1 diabetes, 31 – 35).
• Value of sharing information with other patients and
healthcare professionals
“I’ve never felt the need to, in fact probably the contrary, I would be
trying to be as articulate as I could to get it across to people what
it’s really like” (Joan, ME/CFS 56 – 60).
• Concepts of audiences typically extended outside
actively participating in the forum – but some
exceptions.

17. Privacy
17
• Interviewees described filtering what they shared
and where they shared it
“I just didn't feel I could expose that kind of thing to the internet.
That was too personal, too vulnerable, especially when we were in
the middle of it” (Louise, type 1 diabetes, 31 – 35).
• Value of sharing information with other patients and
healthcare professionals
“I’ve never felt the need to, in fact probably the contrary, I would be
trying to be as articulate as I could to get it across to people what
it’s really like” (Joan, ME/CFS 56 – 60).
• Concepts of audiences typically extended outside
actively participating in the forum – but some
exceptions.

18. Role of Moderators
18
• Architects of privacy and anonymity online?
• Three interviewees (Mark, June and Anne)
moderators on the one forum for patients with
diabetes.
• Set the standard about what was and was not
acceptable or appropriate to share online
“As a moderator sometimes you go in and you edit out the name of
a specific healthcare professional that they’ve mentioned, or their
contact details, their phone number, their email address” (Mark,
type 1 diabetes, 41 – 45).
• Role extended beyond an involvement in forum posts
“I made a comment in public about how I felt it was a great shame
that people had to behave in such a manner” (June, type 1 diabetes,
66 – 70).

19. Role of Moderators
19
• Architects of privacy and anonymity online?
• Three interviewees (Mark, June and Anne)
moderators on the one forum for patients with
diabetes.
• Set the standard about what was and was not
acceptable or appropriate to share online
“As a moderator sometimes you go in and you edit out the name of
a specific healthcare professional that they’ve mentioned, or their
contact details, their phone number, their email address” (Mark,
type 1 diabetes, 41 – 45).
• Role extended beyond an involvement in forum posts
“I made a comment in public about how I felt it was a great shame
that people had to behave in such a manner” (June, type 1 diabetes,
66 – 70).

20. Role of Moderators
20
• Architects of privacy and anonymity online?
• Three interviewees (Mark, June and Anne)
moderators on the one forum for patients with
diabetes.
• Set the standard about what was and was not
acceptable or appropriate to share online
“As a moderator sometimes you go in and you edit out the name of
a specific healthcare professional that they’ve mentioned, or their
contact details, their phone number, their email address” (Mark,
type 1 diabetes, 41 – 45).
• Role extended beyond an involvement in forum posts
“I made a comment in public about how I felt it was a great shame
that people had to behave in such a manner” (June, type 1 diabetes,
66 – 70).

21. Discussion
21
• General conception among interviewees of forums as
public spaces – but were aware of those who did not
share this view.
• Implication of deviance from forum norms?
• Highlight nebulous notion of privacy online (AOIR,
2012).
• Value of sharing information beyond active forum
members (e.g. Bond et al., 2013).
• Right to informed non-consent:
“It’s easy to imagine your study turning into a nightmare for
patients. Are they going to use your study to cut us all off from
disability because we can sit up in front of the computer? That’s all
I’m saying” (ME/CFS forum user).

22. Implications
22
• Clear role of moderators as ‘gatekeepers’ in shaping
expectations of privacy and anonymity online.
• Could be an important marker in assessing suitability
of use of forum data (AOIR, 2012).
• Anonymity important to many – may need to
emphasise the need to remove potentially
identifying information.
• Onus on websites to clarify and communicate
expectations?

23. Questions
23
• Implications (if any) for practice?
• Theoretical framework?
• Appropriate journal?
• Suggestions for examiners?
• Importance of work?
• Additional feedback?