Thursday, 5 August 2010

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'.

46 comments:

  1. Excellent preso Anne Marie! I love this...

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  2. Thanks Anne Marie, lots of food for thought here.

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  3. Hi Anne Marie. Thanks for sharing your presentation and message. Hopefully it'll get picked up by more health educators.

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  4. Thanks all. I thought I might provoke more debate but perhaps just common sense.

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  5. Or preaching to the converted!

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  6. Really thought provoking. So many rush into social media unaware of the pitfalls. Best to tread carefully

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  7. Social media can leave a person very vulnerable. I suffer from IIH + belonged 2 a related and reputable forum and was surprised 2 receive spam e-mails offering spurious health advice..luckily when I had recovered and was informed enough 2 recognise it for what it was. Moreover there are so many profiling tools out there that I suspect my on-line activity reveals more about me than I know about myself..leaving patients dangerously open to exploitation

    In reality we do not know who we are talking to on these sites and despite the opposite being suggested a follow is an endorsement. Someone who may appear to have a similar point of view in one context ,may be rabidly married to some less than savory views in another ( a lesson I learned from an atheist with vehemently anti religious views). Unfortunately accounts become so large it is often difficult to effectively police them.

    Policing yourself is also a worry..many are the comments I wished I had not made or times when I should have waded into arguments but didn't.

    That being said I am pleased that I ventured into social media as it has opened up a wealth of information, a huge pool of interested and interesting people who have given me a new perspective on various issues. not sure I have a handle on it though

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  8. Noxi,
    Thanks for sharing your story. There is an awful lot to be gained from patient communities- I was a member of one for many years myself and got great comfort. But I am sure that they may not all be like that.
    Why and how health professionals could support patients in communities like this is a whole other big question.
    Really appreciate your view from the other side:)

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  9. Charming, useful intro to social media and some important questions for physicians. Great slides! Your "common sense" tone may attract some folks who've been turned off by all the buzz & chatter over social media. How will you spread this program? I'll gladly Tweet about it.

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  10. Great info, but I'd listen just for the accent.

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  11. Thanks Susan. I really appreciate that.

    And Rob, can you place the accent? ;)

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  12. I think the most compelling reason to not use SM in medicine is not only the social aspect, but the permanent aspect. A verbal conversation is gone once the air stops vibrating, but a written one - especially one on Twitter or FB is there for good, basically. I think seeing SM as a pager to initiate conversation is probably more appropriate. Even then, simply documenting the initiation of the conversation breaks privacy rules.

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  13. Nice presentation (and I like the accent as well). I think the point is very valid that although we may think everyone should know the rules of privacy concerns as far as what is posted on the internet, there are still many people who have not used social media enough to be aware of the potential dangers of what they post on the internet. I don't think someone for example would realize that simply asking a question about a health care topic gives more information about their own health than they would realize. In the example of contraceptive questions, depending on the question, it would imply certain sexual behaviors that the person may not particularly wish to be made public.

    Another point I thought about was how both Facebook and Twitter can establish conversations that feels a lot like a conversation in a closed room or over a phone line. So, even internet savvy users can have the conversation go in ways that you probably would not otherwise want everyone to know about. It's the same idea behind reality TV shows - they're hoping the cast habituates to the presence of the camera, and eventually they act as they would without the camera there. So people end up posting things they would not likely post if they were writing a well-thought out blog post.

    In short I agree that the way social media is set up right now, I am not planning on having direct patient interactions online anytime soon as a practicing neurologist in the US.

    Thanks again.

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  14. Yes, it is the permanent AND public nature which concerns me.
    Could you explain a little more what you mean about using social media as a pager? I think that is how Zena (@rothsexhealth)would use Twitter and Facebook although she hasn't had any messages like that yet. I am uncomfortable with that as it is public as you say. What I would hope is that greater awareness of her mobile number would allow clients to get in contact with her by text message say. In the UK, pay-as-you-go mobile phobe contracts sometimes allow free texting even if credit for calls has run out and that would be important in the groups that Zena really wants to make contact with.

    Thanks for the comments.

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  15. @ohsuneuro Yes, that was one of the issues that Zena and I talked about. If a client is friends with her her on the Facebook page would they think that this is a safe place to talk? Of course, it wouldn't really be as we are unsure of the identity of the others who are 'friends' as well. That worried me too.

    Any patient or client or member of the public is free to strike up a conversation with anyone else online or offline about any topic under the sun. The dange to me is that as heallth professionals we may encourage sharing of private information in public spaces, and worse, make that public space seem safer than it really is by our presence.

    Thanks for taking the time to reply.

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  16. Its worth considering that young people are frequently engaged in public places regarding chlamydia screening.
    In fact at most freshers Uni or college events Contraception services NHS or otherwise converse openly about sexual health issues with young people.

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  17. Very well thought out presentation, AM. Could have been a bit shorter, but I don't mind. I agree with Rob. I'd listen to 20 more minutes just for the accent.

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  18. I have fallen foul of ending up in a comments 'tussel' on a blog with someone I felt was making unfair replies to the comments I was leaving. I found it distressing and quite traumatising and I had to leave well alone in the end, it was a steep learning curve!
    I try and stay within the boundaries of my expertise and a try and give a balanced view. I must admit I never intended to be any sort of midwife guru when I went on twitter it was just more for the social aspect. But then I find much of me is tied up in what I have trained as and I enjoy highlighting issues and educating and provoking thought.
    Our Code of Conduct from the New Zealand College of Midwives has just been reviewed to include a reminder about privacy within social media and about representing the profession in an honorable manner. But they haven't gone as far as writing hard and fast rules to follow.
    I am just not sure it is sufficient to just ignore and dismiss social media as a health professional, I believe it is only when we engage and become involved can we ensure that information and professions are portrayed in the way that we want them to be.
    So as far as the video goes anything that helps health professionals understand and be less fearful of social media the better.

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  19. @Zena Do you not think that there is a difference between talking to someone in public face to face and talking to them in public online? I think there is a big difference because once something is digitised and public it is effectively permanent. It is a public record (in fact the US Library of Congress is archiving all tweets http://www.guardian.co.uk/world/richard-adams-blog/2010/apr/14/twitter-library-of-congress).

    Imagine if those conversations at the Freshers Fair where videoed and out on YouTube, or even just transcribed and put in a blog post, or posted on a Facebook wall page. That would be different wouldn't it?

    I'd also guess that the activities in places like Freshers fairs are about more general education rather than consultations about something where an individual has a specific issue. Do you think that is true?

    I think it is really worthwhile trying to tease these things out. Thanks very much again.

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  20. @PamDH I reply at last! I wanted to ask if you could post a link to the NZ policy on social media. Would you be happy to use Facebook or Twitter to engage in dialogue with a client? I know that you use YouTube well as an educational tool but would you feel happy using social media for interaction? Does your use of these tools ever result in conversations which you don't think are in the right place?
    Thanks again,

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  21. Superb Anne Marie. I would love to share this with the folks who are part of my network.

    I admire what @Zena is doing - not only getting her head around the technology, but putting herself out there as a professional in social media opens her up to all sorts of discussions, comments and criticisms, in a very public way.

    I agree with AM's concerns that what happens online stays online. Forever. And from the comments from patients here it's worth remembering how vulnerable people are especially when they have health problems, their concerns may overtake their care for privacy.

    I see what professionals like @zena are doing as advertising good information to people on a variety of networks, giving them the channels to communicate/find someone, and then taking the conversation off line.

    Even if you have the best expertise in health - if you don't use social media how are patients going to find you?

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  22. I don't think I would be happy to engage with a particular woman on Facebook or twitter in an open forum. I am currently imagining writing a message on someone's wall along the lines of, "Hi, I have just got your vaginal swab back which confirms you have chlamydia can you call in for a prescription".
    Although the same debate still continues about giving such results over the telephone and especially about giving blood results via text message.

    I cannot recall a conversation going too far or feeling anything was inappropriate I only worry about the rules governing the appropriateness of midwife/woman relationship and maintaining a 'professional' distance and 'terminating' the relationship in an appropriate manner when discharged from maternity care and then at soem point when you have looked after them you may mention you are on facebook, we can all ramble at 3am when scrabbling to find conversation during a labour of a woman, she may then chose to try and track you down. It then means they can get information about your personal life.

    The college of midwives document is currently at the consultation stage and as soon as it is public I will get the link.

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  23. http://www.midwiferycouncil.org.nz/content/library/Code_of_Midwifery_Professional_Conduct_for_consultation_proof.pdf

    This is the current document regarding professional conduct which is under consultation

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  24. Susan Kennedy aka Ada Peck7 August 2010 12:26

    Great presentation, Anne-Marie, thank you for sharing it. Some carefully chosen and interesting pics to accompany which I liked. Thought-provoking stuff although I'm slightly wary of showing something like this to some colleagues in Med Ed as it might confirm their worst prejudices about social media. It's a difficult balancing act at the moment, I think. Those of us who are converted to the use of social media for learning need to have conversations sparked by presentations such as this but there are still so many who are anti all new technologies and who still need to be won over (I think) to the learning potential of these technologies. The privacy thing is a very difficult one. It amazes me what people will share/disclose/reveal on FB especially. The young and the vulnerable, particularly, need to be protected. But I think that this will come rather through self-protection, as we all learn - almost certainly through social media itself - how ensure the best privacy settings, things not to say and do etc.

    Many thanks, Anne-Marie.

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  25. @Heidi
    Thanks for your comment. I agree that social media may be a useful way to disseminate contact details. But I do have grave concerns about encouraging its use a contact medium. And it may be heresy but the people who probably most need Zena's help probably have the least access to social media in any form. This is where enabling patients to make contact by SMS is really useful. Those are 140 private characters.

    @Pam I'm glad you can't imagine giving results of a chlamydia careen to a patient on their Facebook page! But could you imagine encouraging clients to send you an @ message on Twitter? Or to leave a comment on your Facebook profile?
    The issues around professional relationship are very good. For that reason alone the use of Facebook fan pages rather than profiles may be a good idea. It would still allow dissemination of info but would make the public nature of discourse even more apparent. I'd also strongly urge the use of warnings about the public nature of any posts. Our patients/clients have much more to lose than us in these interactions so better safe than sorry.
    You've definitely helped the conversation move on. Many thanks!

    @Susan Thank you. It's interesting that you think that this might put people off social media. I'm saying this and I'm probably the most tweeting doctor in the UK! I think that professionals appreciate honest discussion about pros and cons. It would be foolish, if not irresponsible, to suggest that all was rosy in the social media garden. I may be wrong but I think if together we can come up with some sound guidelines for practice then we will be able to show jobbing doctors and nurses and OTs and physios and health visitors that we have thought sensibly abbot the issues. Honesty and integrity will encourage them to try things for themselves.
    You are right that individuals need to learn and make their own rules about privacy vs openness. My point here is that as professionals we shouldn't make public spaces look safer than they are.

    Thanks to all of you for the great discussion.

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  26. AM - Vy good. I'm not sure who your intended audience here is but I really try to clearly define SoMe early on, especially with health professionals. In slide 8 you hint that you might clearly define it. What I use is, "Content created by people using scalable publishing technologies intended to facilitate communication and interaction." I then jump into the Solis wheel to illustrate the breadth of platforms.

    I have had a number of requests for prezis on ethics of SoMe. This is becoming a huge issue in the states and it will evolve.

    Otherwise a nice intro. Depending on where you wanted to go with it, I could make specific recs. Hope that helps.

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  27. @Bryan I suppose I made a specific decision not to get to use too much jargon. I've used the wheel when talking to peers before but fear it's effect is to bamboozle. All I wanted to do was say that the things you have heard off like facebook and twitter can be called social media. But....if you are watching this on a blog then you probably know that.! Hence I can understand your query re audience. The really important aspect to my mind is having a conversation about what is acceptable/sensible/good practice in the use of social media by health profs if at all.
    Our professional bodies don't seem to have done that yet so I think we should be considering moving things on.

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  28. Anne Marie

    Well laid out thoughts.

    Listening to your presentation, it occurred to me that when it comes to public discussions between patients and providers, there's a distinction which may be worth exploring:

    - Being available to converse via public social media
    - Encouraging patients to converse via public social media

    In the first case, a hospital has a presence on Twitter, Facebook, etc. and does engage publicly but is rather passive about its presence. In the second, a hospital actively encourages the public to comment and tweet, etc.

    I focus on this distinction because I think the matter of whether or not patients should be having public discussions is ultimately about the information and knowledge people have about what happens online and their personal philosophy about how public they want their lives to be.

    How to fully inform patients about social media? That's a tough one - especially if the only transaction takes place on Twitter or other public social media. On proprietary sites, it may be easier.

    We gave to remember: these social networking software were not designed with healthcare in mind. So now, we're all trying to figure out how to re-purpose them and most safely and effectively use them.

    As i see it, there are two variables that drive how patients and providers should (if at all) communicate via social media:

    - Knowledge of the nature of social media's historical permanency
    - Willingness to disclose information

    If a patient is both fully knowledgable and willing, I can't say its my place to deny her or him the opportunity to engage with providers online.

    If, on the other hand, a patient is not knowledgable nor willing, then the question is: how is that best handled? And: how would a provider know how knowledgable the client is?

    That's why I think the distinction between Being Available versus Encouraging is an important one.

    @PhilBaumann

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  29. Hi AM I take your point about the permanence of the discussion on-line as opposed to discussion in public. However, there are many tweeters on-line doing their best to answer questions about health from the public. This is my attempt to provide help in an agony aunt style which is not intended to disclose personal identity. Thanks

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  30. @PhilBaumann You have got to the heart of my post. No part of my professional identity makes me feel that it is OK to make myself available to publicly converse via social media with patients/clients. You are a registered nurse. Have your professional bodies given any guidance on this? How could a professional decide within the current format Twitter or Facebook that a client/patient understood the public and permanent nature of the interaction? Why take than risk when there are other non-public ways to converse? It seems quite a bizarre risk to take to me.
    I really appreciate you sharing these early thoughts and look forward to more discussion.

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  31. @zjp Zena, thanks for replying again. I am not aware of tweeters trying to answer questions about health from the public, so I would really appreciate if you could post some example twitter IDs here. It would be great to get their input to this discussion.
    Your next point about providing an agony aunt style service confuses me as that is not how I understood your presence on Twitter and Facebook. To be honest, I don't think that it would work. Most people on Twitter and Facebook ARE using their real identity. So to use your service without disclosing their personal identity they would need to set up another account. We are increasingly realising that pseudo-anonymity does not work well on the internet which is why almost everything I do online is in my real name.
    Thank you so much for continuing this conversation. The discussion is very good!

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  32. @Anne Marie

    I'm with you - but who am I to tell another provider how they interact with their clients?

    Who am I to deny a patient and a provider a mutually agreed upon way to communicate with each other?

    There are always costs versus benefits decisions to make.

    Are we to make an absolute prohibition with extreme prejudice on how human beings make their decisions about their healthcare?

    Are you saying that any of the benefits to patients should be denied just because of the potential risks and costs?

    Is this how healthcare is going to be in 2099 - we all have to be quiet and not get the chance to extend conversations with our caretakers: even if there's mutual consent to do so?

    Life isn't black and white. Nor is the provision of caring help to human beings.

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  33. @PhilBaumann I can't predict the affordances of social media technology available next week, never mind 2099! If a service arrives that makes it easier to make sure that the patient/client and I BOTH know what we are doing if interacting publicly, and if the patient/client chooses to do this despite being offered a private service then of course we would need to think about the utility of that service.

    What do you think that the benefits might be to a patient of that kind of public discourse?

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  34. @Anne Marie

    Just a few benefits:

    Research

    Ability of grieving parents to tell their stories and network with others going through similar situations

    The convenience to patients *fully willing* to share their data and receive information from reliable sources.

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  35. @PhilBaumann The examples you give are not individual consultations of the kind I refer to in the slideshare. Instead I am talking about one-to-one consultations with a health professional which traditionally took place face to face, and then by telephone, and now by email. What would be the advantages of carrying out that kind of consultation in public for the individual patient or client?

    Sorry to pull you back on topic!

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  36. Congratulations, Anne Marie, for starting up an interesting discussion about SM in healthcare.

    My personal opinion goes both in a cautious but also experimental direction.

    I do consider that SM has a very relevant role in healthcare in two main aspects: first, access to information and second, better communication (among healthcare professionals and also between healthcare professionals and healthcare consumers).

    In my perspective, the actual SM technology can be used adequately by healthcare professionals to promote access of healthcare users to adequate information and to enhance a level of communication that doesn't endangers individual health. It's also a powerful and interactive tool for creating personal learning networks among healthcare professionals.

    But speaking about using SM for clinical purposes (advising or consulting a patient), I think that they aren't the right tools to do it at this moment and we need more research and evidence to promote their use (or not).

    If the different levels of healthcare (primary, secondary, tertiary) were seen has a network that as the healthcare user at its centre, with all the peripheral nodes representing the healthcare professionals, the information and communication technologies that are currently being used in SM could be easily integrated into safe, private and moderated platforms run by the NHS, for healthcare users to participate, engage and share their own experiences. Maybe this is would be seen as "social healthcare networking", something between open social media participation and healthcare information exchange in a safe digital environment.

    BW, Alex
    @agouveia

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  37. @agouveia I love your vision! If as you have done we address the limitations, and work towards the potential, I believe we can get more professionals involved in the conversation. Thanks!

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  38. Randall Griffith9 August 2010 04:02

    I came across your webinar via #hcsm. I am a certified case manager in the US, and you make great points, especially about the confidentiality issue, and the fact that every single thing we "say" on the computer is never erased, which people don't seem to get.

    Thanks for the time you put into this presentation!

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  39. Dear Dr. Cunningham:

    How refreshing your presentation is! The bottom line is that there is a right and a wrong place to diagnose and treat a patient. The public sphere is not appropriate for those activities. It is too easy to violate that tenant and equally easy to engage in drug or clinical study promotion that gives short shrift to patient protection laws. While there are no current guidelines specifying how social media may be adopted into health care communications, the current standards concerning old forms of communication media still apply. If anything, that old rubric makes it easier to define what is allowable and what isn't. Even if the rules later become loosened by governmental agencies, if you have operated under the conservative framework, you have a clear idea of what is proper. In all cases, that means no solicitation of private health information online in the public stream. Take those conversations offline. That's just plain common sense.

    When I see cavalier and clumsy attempts at social media that weigh too heavily on the marketing aspects and very little on the privacy side, I become wary. It is akin to hearing carnival music in the background and I grow impatient with such amateurish approaches. It takes so little to squander a person's privacy and reputation online. I find it unfathomable that any health care practitioner would sacrifice something so precious to have a public chat. I advocate the use of social media, but only as practiced according to the highest ethics where HIPAA, GCP, and the FDCA are followed in the strictest sense. Do no harm.

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  40. Really enjoyed your presentation Anne Marie! Very thought provoking and extremely 'current'. I can understand why Zena may have chosen to interact through twitter and facebook as they are the social gateways for many young individuals, and therefore their popularity is an attractive proposition in increasing awareness of services available. However, where do you draw the line? At increasing awareness through social media channels (which is great!) or actually 'diagnosing' and dealing with confidential information? Deni

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  41. Hi Anne Marie, Just to clarify for you @RothSexHealth and the associated Facebook page is an additional mechanism for promoting the LARC nurse service and creates opportunities for off-line discussions and public health promotion.

    Referred to as an 'Agony Aunt' style of discussion, Zena is inviting SM users that she has usually already come into contact with to ask generic questions *specifically on the subject of Long-acting reversible contraception (LARC)* for general public reading.

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  42. I agree with the many comments about the need for privacy in the communication between patients and healthcare professionals. I would feel very uneasy about the public and permanent nature of facebook/twitter etc in any of my doctor-patient discussions.
    But there is a definite tension between what we feel is right as healthcare professionals and the attitudes of our patients – especially the younger generation of patients who have grown up with IT, facebook. (Twitter being used by a different, older demographic)
    There is undoubtedly a cultural divide – the 40-something Guardian reader is typically very concerned about ID cards and intrusions of privacy whereas the 15-25s play around with social networking sites regarding George Orwell’s “1984” as an irrelevant anachronism.
    What information is out there about a person in cyberspace is like grains of sands in a vast desert that is expanding endlessly. I am sure that this is the perceptual position of many of the younger generation and helps to inform them of their relative insignificance in the world.
    Then there are celebrity culture, reality TV and young people’s thirst for fame. Nowhere is this more bewildering than in the TV programme “Embarrassing Bodies” where people are encouraged to present problems that they would find far too embarrassing to discuss with their GP within the one-to-one safety of the four walls of his consulting room. Instead they have their most intimate concerns aired in front of millions.
    What I think needs further development in the area of medicine in social media is exploration of the evolving attitudes of the users – the patients – to the conflict between confidentiality and accessibility. This should inform how our ethical guidelines should evolve – at least as much as our own professional conservatism of wanting to cling to outdated principles of confidentiality.

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  43. great presentation: with your permission I am going to link to this for students of BA Health and Social Care as part of discussion on technology in H&SC management

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  44. @Jane That would be perfect. Please do:)

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