Paying for Privacy? : Patient organisations and Facebook

A few weeks ago I wrote about my concerns about health professionals using free public social media platforms such as Facebook and Twitter to interact with patients. Concerns about Facebook and privacy are widespread, and we are beginning to appreciate how public information about us online can be used to build up a profile telling much more than we might think.


danah boyd in some excellent research on young people and  Facebook privacy, challenges the idea that they just don't care. They do. She also states, citing Goffman, that "managing social situations and navigating impression management require understanding one’s audience."

This was one of my concerns with health professionals encouraging the use of public channels by patients/clients. How can we be sure that those who participate understand their audience? How much responsibility do we have to make sure that they know these interactions are in public?

But it isn't just health professionals who are using Facebook as a platform. Patient organisations often also have Facebook fan pages too. Diabetes UK has one and it is popular! There are currently 16, 593 fans as I post but there will surely be more by the time you read this. There is much interaction. People are leaving messages on other's wall posts asking that they are added as friends so that they can talk about diabetes. Others are posting their results and getting positive feedback. There are some wall posts saying to avoid the wall posts of some fans who are claiming 'miracle cures'. All of this is public. I can click on any fan's picture and find out more about them. Very few seem to have their privacy settings as closed as mine, I am sharing even less since I wrote this post.

So would I encourage patients to join the Diabetes UK Facebook page to get support for their condition? Should I join myself and start giving advice to patients who are posting there? The info page for the Fan site makes no mention of the public nature of any discourse there. I guess it presumes that everyone knows, but is that sufficient?  I then had a look at the Diabetes UK website. There is a private place to network on the Diabetes UK site, but it is open to members only. To be fair to Diabetes UK, anyone wishing to join is able to decide themselves how much they can afford to may for membership (of which access to this private network is one benefit). The suggested membership is £24/year but other amounts are possible. The payment does have to be made by debit/credit card or direct debit, and as I work in a deprived area I can see the payment method alone being a barrier to some of my patients. I'm not sure how closely membership of Diabetes UK, reflects the socio-economic distribution of people living with diabetes.

(24/8/10 EDIT: Diabetes UK also support another forum which is free to anyone, http://www.diabetessupport.co.uk/index.htm. Although this is a public/open forum it is not linked to a Facebook profile with the risks associated with that. In the guidanceI  can not see any discussion of the public nature of the site or advice to consider disclosure of personally identifying information.)

I'm on record as being concerned about the impact of the digital divide on health, but once the disadvantaged get online they will increasingly face other hurdles. The end of the free web and the rise of paid-for apps is predicted in a much discussed Wired article. Are we already seeing examples of this in health?

A comment on my blog suggested that privacy is a concern of 40-something Guardian readers, not young people. We know that this is not true. I haven't seen the research, but I'll hazard a guess that poor people value their privacy too. However, they might not be able to afford it.

What do you think?

IMAGE: Horizon "Defining Minimum Privacy".

EDIT: 24/8/2010 6.30pm I've just noticed that Diabetes UK have added the following information to their info page:
"Please remember that this is a public page where posts can be seen by anyone who likes this page. Also anyone will also be able to see your personal profile unless you have changed your privacy settings accordingly. For more inforamtion about privacy and staying safe on Facebook, visit: 

http://www.facebook.com/privacy/explanation.php"

Learning Styles don't exist.

I came across this brilliant example of how to use YouTube through @samuelwebster. Do you talk about learning styles when teaching?

My thoughts on Health Professionals and Social Media

Health professionals and social media

View more webinars from Anne Marie Cunningham.
What do you think? If you are short of time you may wish to skip to slide 16.
EDIT 29/9/2010 : At 6min10sec I refer to 'social marketing' when I actually mean the use of social media for marketing. "Social marketing" is a different concept and is well explained here. Near the end when I talk about the possible public health benefits of using social media to influence social networks, this would be a true use of 'social marketing'.

AMEE offers virtual participation in September conference

"Dear Colleague

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meet the plenary speakers along with the other online conference participants, following the plenary presentations in a dedicated interactive question and answer sessions. All you need is a broadband connection. If you have a webcam and microphone you will also be seen and heard when you ask a question or comment.
participate, through webstreaming, in conference symposia on important topics including updates in medical education, team-based learning, self-assessment, research in medical education, medical education in the 21st C, the future doctor and the future curriculum. Comment or submit questions by texting or phoning.
access an on-demand recording of a review of 7 years of AMEE Fringe sessions highlighting some of the most innovative and somewhat different ideas about medical education.
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access online abstracts of the 450 short communications and 600 posters.
access recordings of the sessions to watch at your leisure if you can’t participate live.

Perhaps not as good as being there in person but certainly the next best thing. Join online and hear about and share key developments taking place in medical education.

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Enrol for AMEE 2010 live online at www.amee.org for only £99. This entitles you to one login with the sessions viewed by an individual or multiple users at one computer.

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What are the risks in sharing PhD findings before completion?

Last week I was at the ASME conference. The conference abstracts are available online but the conference does not facillitate or encourage the sharing of actual presentations ar this stage. It occurred to me whilst there that rather than having posters displayed in quite a small space and often lacking the opportunity to engage with the presenters, wouldn't it be much better to have these online in advance so that comments could be left for the authors.

I am suspecting that I am increasingly growing in distance from my medical education researcher colleagues. And this is the reason why. One of the presentations I attended was so good that before it ended I emailed the presenter (during the presentation!) and asked if I could have a copy and encouraged that it could be placed by them on Slideshare. This was work leading to a PhD but as yet unpublished in any other form. Today I gratefully received an email with a PDF of the presentation. But the accompanying message stated that the author had been advised not to upload the work as it contained unpublished material. They were happy for me to have it personally and share it informally.

I know that my audience here may well disagree that it is dangerous to share work in this way. But how do we manage to change perceptions? How would you counsel a PhD student you were supervising on this? Is it up to organisations such as ASME to lead the way in this? Or should institutions have policies? Is there any proof that sharing work does lead to better outcomes for students and the wider community?

I feel this is at the very edge of 'open science' and makes me realise how far there is to go.

Image: CC by Jacockshaw, Flickr.

EDIT: Here is the Friendfeed discussion that emerged around this post:

ASME Conference 2010

The Association for the Study of Medical Education (ASME) had their conference in Cambridge, UK earlier this week. You can find out more about the conference here. I did tweet thoughout the conference and although I was a rather solitary voice I did have some good interaction with my followers as usual. A transcript of tweets can be found here.

I wish I could link to some of the very interesting presentations I attended but they are not online as far as I am aware. However, one of the keynote addresses was given by John Norcini, from FAIMER (Foundation for Advancement of International Medical Education and Research) using Prezi. I searched the website and found his presentation so can share it here with you.

Although ASME is an international organisation it does have strong UK roots so his presentation on the problems for medical education internationally was an interesting change. I should also point out that the UK does not yet have a national licensing exam. Licensing is carried out by medical schools who are accredited by the GMC (although I did hear some talk at the conference that a national exit exam may be back on the agenda).

One of his most interesting points was that often medical education followed fashion, which was then evaluated. He gave Problem-Based Learning (PBL) as an example of this. But there was evidence during the conference that other aspects such as the use of simulation are also being thought of more critically now. We don't have the evidence to justify widespread use.

I also talked to some other doctoral researchers about the need for a network to share our questions and learning. Watch this space for more about that!

What next for medical education? on Prezi

Social learning with Twitter

Social Learning: an explanation using Twitter

View more presentations from Jane Hart.

I was looking at this presentation by Jane Hart when I thought I should share my own screencast about using Twitter for learning. I have been experiementing with using Screenr to record feedback to students who ask me questions through a discussion forum in Blackboard. I discovered that not all students know what a screencast is so that is something for me to consider in future years! And I have also experimented with downloading and sharing the short videos I've made on a Facebook page. Like all my screenrs this is quick and dirty but hopefully gets across quite a nice story.