Dan O'Connor

Dan is responsible for translating social media research into the analytic and conceptual frameworks which underpin the team’s product and service development. He is particularly interested in how social media has changed the ways in which people exchange information within networks, and the impact that these changes have had on traditionally top-down information systems, such as those prevalent within the health, education and NGO sectors, where he leads RMM’s activities.

Dan’s focus upon health and education stems from his background in academia: He has a PhD in History and, as well as being Head of Research at RMM, he is a member of faculty at the Berman Institute of Bioethics at the Johns Hopkins University in Baltimore, USA. He has published and lectured widely on the ethics of social media use within healthcare systems, and is involved in the application of social media in medical education at Johns Hopkins hospital.

Dan likes cooking, martinis, and irony. Frequently at the same time.

19 responses to “The Case of the Twittering Kidney Patient: Healthcare and the Ethics of Social Media Monitoring”

  1. Colin Wren

    Hi Dan, excellent blog post. Really well thought out and you provide some great arguments.
    I’d like to correct one thing, the consultant in the case study never contacted the patient via Twitter, he read the tweets and when the patient next saw the consultant, the consultant told the patient about the tweets being read and corrected the patients diet.

    As for the motive, the monitoring was set up for the first 2 options in your post, I set them up to see how we could help patients via Twitter (by sending links to patient information and the like) and also to try and protect the St George’s brand on the internet.

    I’m glad that the case study has inspired you, and I certainly hope that people don’t start comparing me to Hitler :P

  2. Anne Marie Cunningham

    Hello Dan,

    I’m very glad that you have across the #nhssm as this is an excellent contribution to the discussion. Your post clarifies several issues that I have clumsily raised in my comments on the other blog and in my own head. Here are some responses:
    - With regards to personal responsibility for privacy, I hope that in the coming months we will see increasing discussion around health-related digital identity issues. And I, personally will be considering what is my role as a GP, in helping patients to be aware of their health-related digital footprint. It doesn’t apply in this case but I am very concerned about any organisation (NHS, voluntary or other) establishing spaces where patients have less privacy than they are used to in discussions with clinical staff, without making that reduction in privacy clear to them. I have blogged about some cases: http://wishfulthinkinginmedicaleducation.blogspot.com/2010/08/paying-for-privacy-patient.html and http://wishfulthinkinginmedicaleducation.blogspot.com/2010/08/my-thoughts-on-health-professionals-and.html

    - The digital divide is also a concern to me so I have interest in your arguments around justice. I also think that service providers are obligated to consider how best to use scarce resources. Moving resources from traditional services to social media because it is fashionable, only, may do many a disservice. With regards to public health messages the use of social media is much more likely to have an economic advantage over traditional ways of working. But the jury doesn’t even have a case to consider with regards to individual, personalised healthcare- yet.

    I have some other thoughts but that will do for now.

    Many thanks again,

  3. Colin Wren

    We currently have not asked patients how they feel about St George’s social media activities, I’d love to one day get to a position where we could ask our patients if they know these social media services exist and how and what they would use them for. Unfortunately this probably won’t happen for a while due to people in high positions (and their peers) attitudes towards social media (Andrew Marr ‘s ‘inadequate, pimpled and single’ stance on Blogger and David Cameron’s ‘too many tweets might make a twat’ spring to mind). And the cost involved to launch such a survey.

    Of course even if we were to ask patients their opinions and get their backing 100% to start talking to patients actively on Twitter I feel that this question of how ethical this interaction is will still pop up and people will still think that the we are just trying to make sure they are not trying to lie to us.

    It’s a hard subject to push towards people as the potential to improve patient care is there but the confidentiality aspect is too much of a risk for it to actively happen.

  4. Alex Talbott

    Hi Dan,

    I think it’s fantastic that you’ve taken the time and effort to write such a thorough piece. The ethics of monitoring patients are a tough one to crack and I believe it comes down to a very personal stance. I would love to be able to get medical advice over Twitter if I had a longer term condition, or even just be able to ask which entrance I should use to access service x or y. Others of course may not like the idea. I don’t think we’ll ever get to a stage where it is acceptable for everyone. In the case of the Kidney patient I may have checked that they were OK for me to pass the details onto the consultant, but otherwise I think it is fantastic that a consultant was open to that information source.

    Regarding the justice argument. I’m afraid I don’t think there really is one. There will always be inequalities in any system and we need to minimise those, but when it gets to an argument along the lines of: ‘we shouldn’t do this because not everyone can access it’ it’s ploitical correctness going too far. By communicating with patients in different ways we will help add a lot of value to the system, helping to get information to where it is needed, when it is needed.

    Great to see #nhssm flourish with Colin and Tim Lloyd at the helm!

  5. SnippetPhysTher

    How about if I propose a twist to the example? I will pretend this particular patient began dialysis. Because the hospital system had a social media team and used searchable terms to monitor public comment on Twitter, it was noted that a patient had some confusion about her diet. The hospital social media team did decide to share the tweeter information and suggested the physician monitor the tweets. Since the physician was fearful of breaking a trust with the patient or addressing a situation that seemed “Big Brother”-ish, the physician decided not to discuss the patient’s tweets about diet. Let’s pretend she didn’t bring up her thoughts about the diet she was supposed to be following and the physician didn’t review diet recommendations at follow-up visits. Let’s also pretend for her case and her situation, the extreme happened. She died and her death was due to too much liquid in her diet combined with too much of a salt intake. We will pretend that in the phone book or on the web or whatever, it is readily and easily known that this particular hospital system did have a social media department. In this particular situation, a known problem and misinterpretation existed which contributed to death. Who’s liable? The patient tweeted a public tweet that did use the name of the hospital.. the hospital social media department did have the tweet pop up in the searchable column… the physician chose to ignore the public information out of fear of breaking trust and thinking the monitoring was too “Big Brother”-ish. I know if that were one of my loved ones, I would be very saddened to learn that due to a physician or a system having fear of the unknown that my loved one’s misinterpretation of information wasn’t addressed.

    1. Anne Marie Cunningham

      Hello SnipperPhysTher,

      Your scenario demonstrates why hospitals are not Starbucks. There is much more on the line that just brand reputation. If communications departments decide to start monitoring tweets then they must have a plan/policy in place that all of the hospital is signed up to. The situation you describe would be a tragedy, and it shows why copying the practices of other businesses before there is any consensus on how we should manage this situation.


  6. Jacqueline Fox

    Dan: This is a fascinating question, in terms of new social media, but what I found striking about it was how familiar the dynamic is to one my grandfather described to me that he worked in from the early 20th century. He was doctor who worked in a small community, and occasionally had intimate knowledge about his patients’ lives and choices because that small community environment precluded some levels of privacy. For example, he was told by a local butcher if his patients were eating food that he, as a cardiologist, did not want them eating. I wonder if the new social media is helping us reform these communities. The relationship the case study describes between the doctor and his patient, via twitter, sounds far more “thick” than ones many patients commonly have to their caregivers.

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