Thursday, 19 August 2010

Paying for Privacy? : Patient organisations and Facebook

Defining minimum privacy

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, 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:"


  1. Pay for access digital communities, can they actually improve anything for healthcare?

    I'm a membery of a couple of pay for access or close private digital communties (they're all geek interest based) and the concept itself is fair enough.

    For for something as "basic" as health, is paying for access the way to go? Plenty of ways to be private without paying. Plus paying just means if someone steals all your information, they can steal your money too. But that's a rather glib view and a minor issue.

    Its not the main point of your comment and its only a very small part of the digital have/havenot divide. But once you're over the divide, I don't think going that little bit further gains you much more.

    And just from an openness point of view, I'm much more likely to trust a healthcare commuinity that doesn't want my money up front.

  2. You raise so many valid points here.

    I have a friend who is a psychiatrist and I know that he has fretted a lot over the boundary issues where former clients wish to become Facebook friends. It's an unavoidable challenge where some of their friends (who are not former patients can be clearly seen to be on his friend list).

    I think you've also raised a very valid point about the possible creation of two tier support fora .. with Facebook becoming the model for people who are unable to afford more sophisticated (and better moderated) platforms with more security).

    There is obvious potential for people with scurrilous motives to trawl such groups for vulnerable people to groom, and then mining their unprotected personal details to build a fuller picture. The fear isn't just outsiders, but of people developing exploitative power relationships within the group.

    For clinicians too it's a nightmare. The GMC is very clear that involvement with one's own patients on social media is a complete no-no professionally. Undoubtedly, participation by professionals can be important to raise the quality of information in such fora, and to challenge / correct misinformation .. but the downsides are too high for practicing clinicians, given that anything said is 'on-record' and could be held to be a consultation or advice giving in retrospect.

    So, yes, it's a nightmare .. yet such groups will grow organically whether we want that or not, and they become something that the professions must find an appropriate way to engage with in the interests of patient safety. Simply shaking heads and vowing not to get involved could end up being a form of negligence by the professions as a whole.

  3. Hi Rob,
    Private doesn't have to be paid for. I think that as health professionals/patient organisations/activists we should be making sure that there are opportunities for private conversations without cost, and if we offer public spaces we should flag up that they are public.

    So you have pretty much nailed the point of this post on the head!

  4. Thank you Christine. Diabetes UK is an organisation that I, and my patients, have a great deal of respect for. I suspect that with regards to privacy on Facebook they might not have thought things through, as much as I would have liked, at least. There will always be much to learn in a continually changing environment. That to me is the advantage of blogging. We need to have these conversations in the here and now.

    Many patient organisations do have partnerships with professionals which are extremely beneficial. I'm sure that Diabetes UK do as well, but I am not sure if those clinicians get involved with discussions on the Facebook wall. Personally, I don't think that there is always a need for professionals. Above I refer to a warning about a 'cure for diabetes'. That came from someone who does not appear to be directlty associated with Diabetes UK. Most patient communities are excellent at self-moderation.

    The fact that what happens online may mimic and magnify the inequality that exists offline is my greatest concern. An egalitarian 'information society' will only exist if we bring it into existence. But perhaps there is too much money to be made to ensure that.

    Thanks again.

  5. To be successful (and deliver better outcomes), online health services will have to offer a continuum of free/paid and somewhat personalized/highly personalized service options. Each online participant - patient, care provider, third-party content provider - will apply a different privacy metric and the metric will vary depending on the situation.

    Payment shouldn't be required to select high privacy levels for online health services. Likewise, use of and monetization of anonymous or de-identified data by the sponsors of free online health services should be disclosed with a rational level of opt-in. When disclosure of personal information is likely to be inadvertent act for some participants (e.g. Facebook Fan Pages, Groups, Causes, Communities, etc.), there needs to be fair warning upfront that a casual viewer of the contributed content will be able to develop personal health conclusions about the contributor.

    Maybe it is time to come up with a simple symbolic representation of the default privacy settings for online healthcare services - what's anonymous (green), what's de-identified (yellow), what's identified and personalized (red)? Likewise, there needs to be a consistent way for online health service content curators and moderators to visually indicate that specific contributed content (posts, messages, tweets, etc.) is an opinion, not a medically or clinically proven fact.

    I'm not sure we face a clear digital divide - more of a fuzzy analog/digital line for emerging online health services where the reference point seems to be "how it was done before." Maybe we need to rethink the reference point?

  6. Hello Tom,
    You have a clear vision of future interactions and that is tremendously helpful. The simple icon idea is brilliant.
    With regards to medical advice I don't think that the issue is so much opinion vs fact (we rarely deal with clearcut facts in medicine even face to face), the issue is whether the advice is generic or tailored to an individual. In a public forum it is unlikely that there will be sufficient information to give tailored feedback.

    Since I am living in the UK, in the world of 'socialised medicine', we may have different ideas about "how it was done before". I do know that moving services online creates another space for inequalities to be manifest, and I want to do everything possible to prevent that.

    Many thanks.

  7. I agree - many valid points and concerns. I would leave good quality information to community members rather than medical professionals participating. Most online communities have natural leaders who evolve, such as, long term cancer survivors who can counsel the newly diagnosed, and they help correct misinformation.

    Many ePatients prefer the privacy of these relative closed communities but some are willing to share their data in detail if it will help find new treatments (

  8. Hi, AM.

    Is the "message" of your post that Diabetes UK should have a line, somewhere on their Page, that says "Your contributions on Facebook are public"?

    From my perspective, in comparison to "old" discussion forums, IRC, etc. Facebook is *far* better at allowing users to control their privacy. I would rather Facebook was the hub for conversation rather than hundreds of other bespoke websites that control privacy poorly. Ones created by one or two "webmasters" on their summer vacation. Facebook invests millions in getting their privacy model right. True, it *may* seem hard for them to actually set them up, but is that your issue (as an organisation), or Facebook's? Where does your "protection" of them end? I mean, if they're on Facebook anyway their default status is "findable". But, agreed, people just don't "understand" that. Facebook, really, is the *only* one who can post a message on users' profiles saying "Set your privacy correctly". No other method is as effective as that.

    I don't really see the icon thing working. I mean, look at the HONcode. Does every health website in the world use that? I'm guessing not. Thinking of the idea is one thing, implementing it, and achieving 100% coverage is almost impossible. Unless it is embedded in statute, I guess.

    Also, Facebook is not free, per-say. It costs to have an Internet connection, a mobile phone subscription, a laptop, a PC, etc. I guess you could just use it at a library, or other means, but for the majority the "freeness" is subsumed by overhead cost. Do you just mean "open"? Facebook, majorly, is open. Paid discussion forums are "closed" in that they are behind password-protected areas that are not indexed by search engines.

    Just being online in itself provokes inequality. But so does having a physical location, so does having a telephone number, so does sending out letters, etc. Even mouth-to-mouth conversation is bounded by cliques, social networks, and many other elements. Even in times before any of these communication mediums existed there were inequalities.

    So, you can tell Diabetes UK to add a "this is public" disclaimer, but you've no evidence to say that people will a) read it, and b) change their behaviour as a result. Should the removal, warning, and banning of pesky users and comments be the responsibility of the Group or Page owner? Probably. But, that's difficult (and costly) at scale.

    Answers on a postcard, or a tweet.

  9. Thanks John,
    In the mid-1990s I joined a patient community (listserve)myself. We had no input from professionals and I think it was all the stronger for it. We could say what we wanted about the care that we received and there was enough experience within the community to make sure that most questions could be answered.
    Unfortunately that community moved to a google group last year and died because everyone had privacy concerns. We probably were 'safe' but it didn't feel it, and having to figure out how to make sure that the group was not associated with a google profile was too much for many so they just left.
    It is heartening that your comments reflect my experience.

  10. There are many combinations and permutations of the public/private, generic/tailored, free/not-free mix. One such example is the Oh Baby magazine site at (privately owned and run) where free advice from registered and recognized experts can be found. Free fertility advice is available from a New Zealand medical leader in the field. Answers to previously asked questions are for viewing. Interestingly the business website of the health expert is linked to their name. For some people it could be extremely useful but there are other channels if it does not provide the personalized in-depth answer required. Many situations require laboratory services and clinical examinations but there are different levels of expert help.

  11. Thanks Mark.

    Yes, I do think that all organisation who provide spaces for interaction on health should do their part to inform users with some education around digital identity.

    Next, as far as I am aware I have no control over the privacy of my comments on a FB fan page. They are either there or not. I can't choose for only my friends to see them, or only those behind the Diabetes UK site. Even if privacy controls are super-tight posts on a Facebook page are public.

    When I said that twitter and Facebook are free to organisations I mean that there is no cost to setting up a Fan Page or Twitter account (yet). Then I differentiated between the 'free' space provided by Diabetes UK on Facebook and their paid for, private space.

    With regards to inequalities, of course they exist offline. That is my point. But some people talk about being online as a leveller. As we move forwards more and more services seem to require extra charges. That is an important issue for a health charity to consider, I think.

    And lastly, of course we don't know the impact of warning people about the public nature of the discourse. But is that a reason NOT to do it? I don't think so.

  12. Great post, Anne Marie. Thank you for having taken the time to craft these observations into so well-structured a piece of commentary.

    Some fascinating comments from Tom, Mark et al too, all of which I'd love to respond to if time allowed.

    However, it was John's comment that caught my eye.

    What if the Gordian knot of healthcare professional engagement is severed within patient communities by the sort of epatient lead commentator that John describes (and whom we've all seen examples of in the communities we may follow or have dipped into, e.g. wonderful work of @rawarrior @stales etc)

    How will HCPs feel about this? Relieved? Concerned? Augmented? Diminished?

  13. Hello Andrew,
    As John says many, if not most, patient communities are private spaces. They have been existing for (in www terms) long periods of time, often for more than 10 years. In my patient community there were not clear 'leaders' but there were people who had been there a long time and were willing to help those who were new to the diagnosis or decisions about management.
    Twitter and blogs may make some of those strong in these communities more visible perhaps.
    It's also important to note that patients talking to each other does not threaten relationships with professionals. If often strengthens these relationships as patients share their stories.

    This post is about possible the largest patient organisation in the UK facilitating a PUBLIC place for this kind of interaction. That is my concern. I want everyone to have the opportunity to find the wisdom of their peers, but I want consideration and debate about which platforms are used.

  14. For me, I think the issue for people trying to provide something is always that interaction has many different purposes and many different outcomes.

    If people wish to talk to each other about issues that some may consider to be private and privileged in a public forum, and they know that they are doing so, then it's up to them.

    The question has to be: What *should* be private?

    Different people have different feelings about privacy. Some are worried that anything they place online will somehow come back to haunt them. Others have a more relaxed approach and feel that nothing that they have chosen to share online would be of enough interest to others. Most of us are somewhere in between.

    In the context of health the question that always needs answering is: 'What is the point of any interactive or participatory site or application from the point of view of desired outcomes?'

    An equally important questions is: 'Are the individuals that are using the site or resource fully aware of this purpose or point?"

    In the case of the Diabetes UK facebook page, it's clear that the technology used to create it gives it multiple possible purposes (discussion, showing support, getting news) and that users have taken what they want from it, regardless of any original intentions in creating it.

    If engagement is your only goal, you have to be prepared to deal with the fact that the engaged user will use your resource however they see fit and then deal with the repercussions later.

    This isn't so bad if you are, say, publicising a new band where your only objective is to generate buzz. Health based projects will need to be more careful.

    I think, to an extent, it's easy to get carried away talking in abstract about implications without starting from the point of 'what is my website / application meant to do?'.

    If you start there, the model for managing interactions and ethical or other concerns will flow from that question.

    For me, I'd need to have a clear idea of what a health website / application service would actually be intending to do before I could see what the actual implications would be for patient privacy / professional ethics / legal implications.

    Regarding the sharing between patients mentioned by Anne Marie above, I'd have to say that there is something more complex that happens in online health-based communities than simply the sharing of stories.

    Mark (@markoneinfour on twitter)

  15. Our experience at HealthUnlocked at developing free platforms for patient groups is that no two groups of patients have the same needs in terms of privacy, validity recognition, signposting of professionals etc.

    It's not just a Gluten/Coeliac group will have different priorities to a Ovarian Cancer group, but that even two different Ovarian Cancer groups will also have different concerns priorities.

    Health is a special case when it comes to online informatics because of the depth of impact that shared health information has on lives. For this reason I think that health communities deserve community platforms that have been specifically developed for use by health communities. I also agree on the other hand that each patient organization will not manage to deliver a top-notch networking platform because there are many pitfalls (although there are some brilliant ones out there - see Teenage Cancer Trust or Shift.MS)

    HealthUnlocked has been set up to try to fill that gap between community platforms that we think are too generic for health (like a facebook fan page), and ultra-specific and expensive systems that are commissioned by patient groups with varying degrees of success.

    We hope that we can succeed because we firmly believe that qualified, transparent shared information and experiences can improve the lives of participants.

  16. This is an extremely interesting conversation. Thank you for initiating it Anne-Marie. I agree with many of the opinions voiced in the comments. I'd like to share some of my observations as community manager of SharingStrength, a patient community for women with breast cancer.

    Considering our targeted demographic, user social media savvy, and user privacy expectations in 2006 when SharingStrength was first conceived, we were careful to advise and allow users to be as anonymous as they wished to be. We coached them in using a nickname that didn't identify them and continue to caution about sharing private contact information. We have an application where members can share private information safely.

    Like other patient communities, the community knowledge of the collective is astoundingly rich and offers what many are seeking. I would like to put your statement of "We had no input from professionals and I think it [patient community] was all the stronger for it." to a sample of patient communities. I tend to agree, but would like hear if this meets over-arching consensus.

    In 2009 we decided to create Twitter and Facebook profiles for SharingStrength. We announced that we would use Twitter and Facebook to:
    • listen to the international breast cancer community;
    • raise awareness about SharingStrength;
    • inform about new content added to SharingStrength;
    • introduce members to people, organizations, information and events they might be interested in; and
    • to offer another platform to interact.
    The first 3 points and possibly point 4 work well, but not point 5. Members told me that they prefer to share in the anonymity of the SharingStrength site.

    Despite this experience, I echo the question that you posed on Howard Luks' blog "Is it worth using Facebook even though we have privacy concerns because people are there, rather than try and get them to sign up to another secure platform?" I'm going to invite Jen McCabe to weigh in on this conversation. I heard her speak at Medicine 2.0 conference last September where she discussed building a community using existing social media platforms such as Facebook and Twitter which she did for


  17. Thank you Mark, Matt and Colleen for your fantastic comments. I will not attempt to synthesis some of your points, and probably fail abjectly!

    Having an awareness of what one wants to achieve is important. Sharing Strength met at least 3 out of their 5 aims on Facebook- but these 3 aims could have been achieved by a Facebook fan page where wall posts by fans were not allowed. Users could still be directed to the excellent resources which Sharing Strength hosts. Has anyone thought of doing that? I know that the Holy Grail of social media is interaction but is it possible that a fan page that is used for broadcast only could work? (By the way, I can't find the Sharing Strength FB page by search).

    Next, all communities have different and have different needs. Matt makes this point very clearly. So to answer Colleen's question about whether my comment about my own experience would be true of all or most groups, we can probably safely assume that it isn't. If you are running a community you probably need to discuss with members what they are most comfortable with.

    I look forward to Jen's thoughts on how we might deal with Facebook's hold over the attention economy as @AJCann put it.

    Thank you all for contributing to such a great discussion.

  18. I think it's worth thinking about 'the attention economy' a little more deeply.

    At present, there are so many individual users on Facebook that it is almost become equivalent to the internet as was. A large percentage of people are currently active facebook users.

    This, however, shouldn't be confused with the issue of an organisation or services possible reach. Network effects are funny things. It is often the case that the larger a network becomes, the more the original strong benefits from membership of that network decline. The more people who casually join your group, the harder it is to do specific things with and for specific people. It's a great tool for raising awareness but isn't so great for the little things, unless that awareness raising pushes people onto executing another task or objective.

    'Just' having a facebook page is becoming the equivalent of 'build it and they will come' website wisdom. Having a facebook page might net you lots of members, but it's harder to know how much your information is travelling to those it's intended to reach. For it to do so, you have to promote it in similar ways to the ways you would promote anything else either on or offline.

    Where facebook has an advantage is that it is built specifically to make the networking of actions and interactions easier, and in some cases automatic. This can have pros and cons.

    Social media sites or technologies should really be defined by the actions that users take, not the structure of them. Yes, facebook is a social media networking site, but this does not describe what the particular qualities of social media produced are and what use they are to people.

    The example of a fan page with static information suggested by Ann Marie above is actually using a social media method to promote an old web resource - A static page of content that signposts further actions that people can take. As such, it's best thought of as floating information in a way that means it can be shared socially, rather than a process of engaging users in the production of social media. You'd hope that users would talk and write amongst themselves about the resource, but their interaction wouldn't be changing the course or form of that resource which is defining factor of whether something is social media or not.

    Mark @markoneinfour

  19. Hi Mark,
    Thanks for the comment. That is exactly my understanding of the way that I suggested using Facebook!
    As so many people are in the Facebook space I don't think that using it solely as a broadcast medium which can be socially disseminated is necessarily a bad thing.

    And I am also mindful of Selwyn's scepticism of the educational significance of social media which I think may be equally true in health. Many of the really very useful communities which we have been involved in do not owe that much to 'social media' at all, do they?

    And how often is the course or form of a resource shaped by discourse that happens on Facebook? And evidence that it is happening on the interactive Diabetes UK page? Any evidence that it ever happens on a fan page?

    Really appreciate you coming back to continue the conversation and your clarity of thought!

  20. Hello,

    Perhaps we should ask why people feel the need to use platforms such as Face Book. Often it is the fact that they cannot access their medical team for advice.Often people's emotional needs are not met by the health care professionals,so they speak to people on line, who do understand how they feel. Please be assured I am not having a dig at health professionals. It is a fact that the diabetes service is under staffed and under funded. I think you have to credit people with a little common sense and lets be honest if people want to find out your personal details, they don't need face book. I have 5 daughters 2 with long term conditions, they are well cared for and have never had an acute admission.Face Book has allowed me to make friend with people who understand how I feel, as they lead similar daily lives. Without my friends the last 2 years would have been even harder. My profile is locked down, but to be perfectly honest the benefits of the emotional support I have received far out weigh the negatives. I am a fan of Diabetes UK as my daughter has Type 1. Although I have to question people offering advice, I question even more why can't they access their medical team?


  21. Hello Angela,

    I'm not opposed to people seeking support from each other. And I don't think they do it just because that support isn't available from health professionals (though I completely agree that there are resource issues).

    But I would like to see organisations like Diabetes UK making it easier for Facebook fans to see that they also had other ways to access that support. I understand that the private network isn't completely set up yet, but they also have I on'y found out about this yesterday and I have been meaning to go back and edit my post to add in the details.
    Although this site is public/open, this online identity wouldn't be trackable in the same way than a Facebook profile is (unless locked down as you say). Did you know about this other site? It's one of the things I would like to see DiabetesUK linking to from their info page. It would also be great for them to post something to remind people to think about checking their privacy settings.
    I'm all for emotional support but I think even more people would take the opportunity to get it if they thought they might have just a little more privacy.
    Thanks very much. I really appreciate your comment.

  22. Hi Anne Marie,

    Thank you for mentioning Diabetes UK in this post – you raise some interesting points. Like many other charities, our interactions with supporters, beneficiaries and the general public through social media have increased dramatically over the past few months. Our Facebook page alone has almost than doubled in size since December, and we are aware that there are associated security risks with people sharing so much information online.

    Facebook has received much publicity over recent times with regards to security and privacy which will hopefully have come to the attention of many of the users who use our page. It is true that a lot people across Facebook as a whole (as well as members of our page) choose to leave their profiles open, with a lot personal information on view to anyone who chooses to look at it. As a charity who make great use of this medium, we do have a responsibility to advise our users to be careful with their personal information. We are in the process of amending the info on our page to reflect this, as well as updating the “stay safe online” section of our own website that we will be able to link to. This will also incorporate links to third party internet safety and awareness sites.

    We will also be reminding people through the info section that any information they post – be it personal, medical or anything else – can be seen by anyone accessing our Facebook page, and will remind users of this on a regular basis. Should people wish to communicate in a more anonymous way, we can direct them to (which we support) where they can post in a forum under a pseudonym should they so wish.

    In terms of the information shared on our Facebook group, we do monitor this regularly and have a team of moderators from across the charity who check in on the group on a daily basis. We do attempt to delete all posts advertising commercial products or anything not endorsed by Diabetes UK (such as the “miracle cures” post you mention) and whilst these may not always be spotted immediately, they are removed as soon as they are noticed. The group as a whole does very well in self moderating itself and can (to quote a user recently) “spot a scam a mile off” and often challenge users who make such claims. We do directly signpost people to information on our website which in most cases addresses the needs of the users, however when questions are a little less general we ensure that a member of our Careline or Care Advisors team help coordinate a response. Where questions are particularly personal, we have on occasions sent a private message to the user and will continue to do this as and when necessary.

    You also mention our Supporting Membership scheme - whilst you can only sign up on the website using a credit/debit card or by setting up a direct debit, you can sign up using a membership form where you can pay by cheque/CAF voucher/postal order – payment methods which don’t necessarily lend themselves to online payments. A change in our membership last May meant that there is no fixed fee, so whilst we do suggest that members pay £24 a year, the actual amount is up to them which offers a lot more flexibility and will hopefully mean that our membership scheme is open to as many people as possible.

    Many thanks for raising such interesting and important issues.

    Joe Freeman
    Digital Communities Executive
    Diabetes UK

  23. Thank you Anne Marie and everyone for this wonderful conversation. I have recently been asked by someone about setting up a forum on Facebook for heart patients and health professionals....your comments have gone a long way to answering the questions posed to me.

    What I would like to know you think health professionals and consumers/patients mix well in the same forum, or should they have their own separate forums?

  24. Hi Sarah,
    They dynamics would certainly be different in a HCP-lead forum. I don't have experience of them so am unable to say but hopefully someone else will:)

  25. Some great points here but some of the comments are about control. Although it should be clear what is public I do think that patient groups have always talked and swapped stories and that the public do it too.

    Facebook just makes what is going on easier to link into and more explicit. Perhaps if diabetics are talking to each other they are discussing their concerns and it would be a good place to start to answer some real questions people have about their treatment and diagnosis.

  26. Ali,
    Of course people have always talked in public about their health! And many will be perfectly happy to continue doing so.
    I just think that if anyone (health care organisation or patient group) provides a space for interaction to take place they should make all participants very aware of the nature of the space.
    That's all.


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