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Actual versus perceived privacy: The case of healthcare discussion boards

Ellen Bradyellen.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

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Background

• 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.

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Introduction

• 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”.

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However...

• 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).

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Research questions• 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?

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Research questions• 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?

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Method

• 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.

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Use of vignettes

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Anonymity • 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).

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Anonymity • 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).

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Anonymity • 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).

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Privacy • 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).

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Privacy • 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).

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Privacy • 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).

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Privacy

• 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.

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Privacy

• 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.

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Privacy

• 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.

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Role of Moderators • 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).

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Role of Moderators • 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).

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Role of Moderators • 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).

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Discussion

• 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).

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Implications

• 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?

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Questions

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