The ethics of health organisations monitoring social media...#justiceforlb

Sara Ryan is a learning disabilities researcher. She is also a mother. She kept a blog about the joy that her son, Connor, who was affectionately called LB (Laughing Boy) brought into her family's life. Last year, Connor became unwell and was admitted to an assessment and treatment centre. 107 days later he drowned in the bath. He had epilepsy and Sara had noticed an increase in his seizures and alerted staff. But he was allowed to bathe unsupervised. Now her blog is about what Sara is learning since his death.

This is Sara talking about LB and the campaign for #justiceforLB.



Today's post  on Sara's blog is about the memo that was circulated the day after Connor's death by the communications department of the health trust, to brief staff about Sara's blog and provide a summary of posts with the aim that it might "help in shaping a tailored media response". Sara obtained this memo today through a Freedom of Information request. It details how Sara's blog had been monitored by the comms team from as soon as they were aware of it in March 2013 shortly after his admission to the unit. It specifically mentions this post in May 2013 just over half way through Connor's admission, where Sara described her distress at realising that Connor had a seizure but not being able to convince the staff that this was the case. Last week Sara was told by the Chairman of the Board that there had been no monitoring of her blog. 

Four years ago there were blog discussions in the UK about the ethics of monitoring social media. There was a particular case of a patient who had had a renal transplant, described here by Dan O'Connor. I made comments here, and in another blog (it was on posterous but hopefully has been rescued and is retrievable elsewhere) that I thought that health organisations should not monitor social media unless they had clear policies agreed by staff throughout the organisation on what they would do in various scenarios, including if a matter came to attention which needed clinical input. I think that Sara's post in May describing Connor's seizure is such a post.

If a health organisation is monitoring social media they should consider in whose interests they are undertaking this monitoring and how they will respond to posts like Sara's.

Connor's death was a tragedy. As the independent report into his death found, it was preventable. This should never happen again.

Link: An excellent post by Tim Turner on the data protection aspect of this social media monitoring.

What should open educational resources (aka #FOAMed) 'replace' in university education?

. @AmboFOAM asked if #FOAMed should be incorporated into uni degrees. #spa2014conf #PAIC2014
— Jess (@EMS_Junkie) September 20, 2014

I thought that all of us agreed on the answer to this question. Surely... surely... it must be acceptable for Open Educational Resources (OER)  to be incorporated into university education? But this tweet produced a lot of discussion. You can see many of the tweets here but some of the issues raised were :

1. Is it acceptable for students to pay for a course where free content is used?  My first thought was why wouldn't it be? But I suppose this question is hinting at a similar distinction to a creative commons license which allows reuse for commercial purposes and one which does not. It used to be that we thought of OER as coming primarily from institutions (and possibly being re-used by them too) whilst social media tools have allowed more and more OER to be produced by individuals and disseminated through networks. Some of this is #FOAMed and it is maybe not surprising if the individuals producing it don't feel so happy about institutional re-use.

2. Can we identify the best lecture on congestive heart failure (CHF) in the world?  This supposes that across the world we have shared concepts of what is the best lecture? Treatments and management might vary throughout the world but maybe we could find the best 'lecture' on pathophysiology? Maybe it is this 13 min long video from Vanderbilt University?


Maybe the students and teachers on your course could get together to try and identify some of the best resources for their course as we are doing here with our curation project.

3. Is the reuse of materials like the lecture above a threat to local pedagogical practice? I struggled most with this question. I happen to think that reuse of materials like the short video above opens up so many possibilities for local pedagogical practice. The video could be remixed using TedEd  with questions relevant to local practice, and links to local guidelines or formularies. It could be remixed using Mozilla Popcorn maker in an infinte number of ways. And the remix could be remixed again by other local colleges or by students. We are not talking here about people sharing content through MOOCs which  often aren't really very open at all, though of course there are exceptions! .

4. What can OER replace? If lectures (like textbooks) were about information transmission then OER selected (and remixed) for local relevance might replace them. And do a better job. But I can't see why teachers will be replaced.

Thank you to everyone who participated in the discussion so far. What other questions should be be asking about OER and do you have any different answers to those I have asked above?

The need for a #1care forum... who will lead?

Why social media is not a waste of time for a doctor - infographic, slides, video and paper!

In Decemeber 2013 - Professor Matt de Camp and I were asked to debate whether social media was a waste of time for doctors in the Journal of the Royal College of Physicians of Edinburgh. You can read the full paper here and see some discussion on PubMed commons about it here. This is my part of the paper with hyperlinks. I should mention that JRCPE is an open access journal who allowed me to retain my copyright. This is therefore published here, along with the infographic and my slides, under a creative commons license so feel free to reuse and remix as you wish.

Why does a twittering doctor tweet? - 10 reasons for a social media presence from Anne Marie Cunningham

These are the slides I used when giving my talk on this at #Dotmed13 in Dublin last December. You can watch a video of the talk below.




 Introduction 

Should you have a strong social media presence? I am going to give you ten reasons why I think you need one. Social media provides an opportunity to publish your thoughts and ideas and to share your experiences without having to go through a middleman. And many people are taking advantage of this. Globally half a billion tweets are posted every day. (1) Surely it must be possible to find something of value that could make it worthwhile for a doctor to start exploring these spaces? It is not nearly as difficult as you might think, because these pieces of information are not just floating unconnected to each other; they are disseminated and linked to through networks of your peers. Developing networks, and figuring out who and what to pay attention to, are some of the key learning skills we need in the twenty-first century. (2) I will convince you that it is worth developing these skills.

10 Reasons to have a social media presence

To connect 

The landmark report on ‘Health professionals for a new century’ suggested that we need ‘locally responsive but globally connected teams’ 3 but lamented that ‘most institutions are not sufficiently outward looking to exploit the power of networking and connectivity for mutual strengthening’.(3) But this is changing. It is now rare to attend a forward-thinking event without being encouraged to tweet with the conference hashtag. We are our institutions, and we are leading the way; we are making the connections.

To engage 

Social media is not just about getting your message out. It is also about listening. We can learn with patient leaders.( 4 )As Gilbert and Doughty, co-directors of the Centre for Patient Leadership, describe ‘[w]hen patients can both manage their own health and go on to develop the confidence and skills to lead and influence others, something special happens: new collaborative systems of healthcare take shape and positive solutions emerge to healthcare problems, locally and nationally.’ (4) Through their blogs and tweets you can engage with them.

To inform 

If you are trying to do things differently, changing the way you and your team work, where can you tell people about this? Consultant endocrinologist Partha Kar uses his blog, NHS Sugar Doc, to communicate how an award-winning team is involving patients in redesigning their service, meeting the challenges of modern healthcare.(5)

To reflect

Elin Roddy is a respiratory consultant. She also tweets (@elinlowri). During ‘dying matters’ awareness week, and prompted by discussions of end-of-life care on Twitter, she decided to write her first blog post: a reflection on how, during her working life, she has ‘been involved with death in many different guises and in many different ways.’ (6) Thirty eight people – health professionals and patients – left comments to say how they had been moved by her eloquent writing. She is now lead for end-of-life care in her trust and says this would not have happened without her learning through social media.

To share 

In a hospital in London a patient has the wrong foot operated on because they put a compression stocking on the wrong side. The checks and balances which the nominally implemented surgical checklist should have provided did not happen. (7) Fortunately the other foot needed operating on too. After investigations were completed the medical director of the trust gave permission for an account to be shared through social media. The story ‘Wrongfooted’ by anaesthetist Helgi Johnannson has been viewed more than 17,000 times. (7) When surgeon and medical director, Dermot Riordan, read the story he wrote on his blog that he felt ‘déjà vu, sadness and even anger’. (8)

.@traumagasdoc This make me both sad & cross. We had near identical case. Reported externally but no learning dissemination by @NHSEngland
— Dermot O'Riordan (@dermotor) October 19, 2013

A year ago nearly exactly the same mistake had occurred where he works. He describes the transparent and open approach that his team took to learning about this incident but he personally regrets that he did not share this learning with others in the way that ‘Wrongfooted’ showed it could be done. Social media is changing how we conceive of dissemination.

To be challenged 

Often the best way to learn is to be challenged. Earlier this year people who had experienced mental health care started tweeting their experiences using the tag #DearMentalHealthProfessionals. (9) Along with appreciation and thanks there were also tweets which expressed how it felt to be let down by a system that is supposed to help. To be able to change systems for the better we need to work towards understanding, and that starts with shifting our perspectives. Social media can help us to do this.

To be supported 

Sometimes we just need to know that we are not alone. #TipsForNewDocs are short messages of advice for newly graduated medics from doctors, other health professionals and patients. Like many social media activities it is hard to say who started this trend but Guardian healthcare(10)and the GMC(11) have both used the tag to support this important transition.

To lead 

How much impact can you achieve through social media? NHS Change Day has been lauded as the ‘biggest ever day of collective action to improve healthcare that started with a tweet’. (12) A conversation between some junior doctors on Twitter was the catalyst for a project which saw 189,000 people take action on 13 March 2013 to improve the care of the patients they served. (12)

To learn 

Free open access medical education – otherwise known as FOAMed (13) is on the rise. In the past we used databases to store and find these resources, but now we are increasingly depending on the power of distributed networks to help filter the best content for our needs. New educational initiatives are starting every week in social media. The case-based discussions of ECGclass (14) and Gasclass for anaesthesia (15) can give you a flavour of what is achievable.

To inspire 

Kate Granger is a doctor training in elderly medicine; she is also terminally ill with a rare aggressive abdominal sarcoma. During a recent hospital admission (16) she noticed that too many of the staff she met did not introduce themselves. She decided that something needed to be done, so she wrote a blog post with a simple idea – when health professionals meet patients they should say ‘hello, my name is’. (17) People started talking about her idea and doing what she asked. The campaign has reached so many people that it is mentioned in the Government’s response to the Francis Inquiry. (18)

Conclusion

Is social media a professionalism quagmire? Could your professional reputation hang on as few as 140 characters? Yes, norms are still being established but that means you can shape them. The truth is that if you respect your patients and your colleagues, like these pioneering physicians, you have little to fear. Instead, you should be feeling optimistic and excited that you can now easily tap into a global community who can help you to be a better doctor in a better system with your patients.

References

1 Naughton J. What’s Twitter’s real value? Don’t ask an economist. The Observer.2013 Nov 24.
2 Rheingold H. Net smart: how to thrive online. Cambridge: MIT Press; 2012.
3 Frenk J, Chen L, Bhutta ZA et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet2010; 376:1923–58. http://dx.doi. org/10.1016/S0140-6736(10)61854-5
4 Gilbert D, Doughty M. Quality: why patient leaders are the new kids on the block. Health Serv J2012; 122:26–7.
5 Kar P. Game-changer III: ward priority and transparency[Internet}. Partha Kar 2013 Nov 16 [cited 2013 Nov 27]. Available from: http:// nhssugardoc.blogspot.co.uk/2013/11/game-changer-iii-ward-priority-and.html
6 Lowri E. Dying matters[Internet]. Elin Lowri 2013 May 13 [cited 2013 Nov 27]. Available from: http://elinlowri.wordpress.com/2013/05/11/ dying-matters/
7 Wrongfooted[Internet]. 2013 Oct 13 [cited 2013 Nov 27]. Available from: http://storify.com/traumagasdoc/wrongfooted
8 O’Riordan D. Failure to learn[Internet]. Dermot O’Leary 2013 Oct 20 [cited 2013 Nov 27]. Available from: http://oriordan.co.uk/blog/ files/Failing%20to%20learn.html
9 Betton V. #DearMentalHealthProfessionals[Internet]. Victoria Betton 2013 Aug [cited 2013 Nov 27]. Available from: http:// storify.com/VictoriaBetton/dearmentalhealthprofessionals
10 Guardian Healthcare. #TipsForNewDocs[Internet]. 2012 [cited 2013 Nov 27]. Available from: http://storify.com/GdnHealthcare/ tipsfornewdocs
11 General Medical Council. #tipsfornewdocs[Internet]. 2013 [cited 2013 Nov 27]. Available from: http://storify.com/GMCUK/tips-for-new-doctors.
12 Bevan H, Roland D, Lynton J et al. Biggest ever day of collective action to improve healthcare that started with a tweet [Internet]. 2013 June 14 [cited 2013 Nov 27]. Available from: http://www. mixprize.org/story/biggest-ever-day-collective-action-improve-healthcare-started-tweet-0
13 Life in the fastlane. FOAM – Free Open Access Medical Education [Internet]. 2013 [cited 2013 Nov 27]. Available from: http:// lifeinthefastlane.com/foam/
14 Wetherell H. Keeping ECGs simple[Internet]. 2013 [cited 2013 Nov 27]. Available from: http://hcwetherell.blogspot.co.uk/
15 Gasclass. Gasclass: the web school of anaesthesia[Internet]. 2013 [cited 2013 Nov 25]. Available from: http://gasclass.wordpress.com/
16 Granger K. The other side live![Internet]. Kate Granger 2013 Aug [cited 2013 Nov 27]. Available from: http://storify.com/katemgranger/ the-other-side-live
17 Granger K. #hellomynameis[Internet]. Kate Granger 2013 Sept 4 [cited 2013 Nov 27]. Available from: http://drkategranger. wordpress.com/2013/09/04/hellomynameis/
18 Department of Health. Hard truths: the journey to putting patients first. Volume one of the Government response to the Mid Staffordshire NHS Foundation Trust Public Inquiry[Internet]. London: Department of Health; 2013 [cited 2013 Nov 27]. Available from: https://www. gov.uk/government/uploads/system/uploads/attachment_data/ file/259648/34658_Cm_8754_Vol_1_accessible.pdf

very quick survey about Facebook in education

social media in medical education... it's all about the network

What is the role of Twitter in medical education?

I started using Twitter (and this blog) because I wanted to connect with people who I didn't know how to connect with otherwise. I wanted to connect to people who worked in medical education but I got a lot more than I bargained for. I found a wonderful network of people who I continually learn from. I can share, and get feedback, dip in and out, refine my thoughts, and the rest.

But do I think that we should use it in our courses? What for?

Last week I attended a workshop lead by Claudia Megele on social media in higher education. She has done tremendous work in establishing several 'knowledge networks' including #mhchat (mental health chat). She then introduced a group of social work students to social media including Twitter. They used pseudonyms but participated in regular Twitter chats and discussed topics online.

It seems to me that the most powerful thing that Claudia did was to introduce her students to her networks. She helped them to become part of a community discussing mutual topics of interest online.

So how can we, committed to health professional education, help our students? I think we can do the same thing. We can give our students access to our knowledge networks.

Social media and medical professionalism : Commentary in Medicial Education February 2014

This is a pre-publication version of the following paper. Cunningham, A. (2014), Social media and medical professionalism. Medical Education, 48: 110–112. doi: 10.1111/medu.12404 

In this issue, Jain et al. (1) are undoubtedly correct when they suggest that the focus on social media in the medical education literature to date has been a worry about threats to professionalism. In conducting their study, they set out to explore how students, faculty and university staff (presumed to represent the public) view the posting of certain materials to public Facebook profiles. They found agreement on the most serious transgressions such as breaching patient confidentiality. There was more disagreement, however, about other issues such as appearing in photographs with alcohol, or as part of what the authors described as ‘same sex couples’.  In general, students were more tolerant than their faculty or the public.

The focus on social media in the medical education literature has concerned threats to professionalism

What does this research on online professionalism tell us about our deeper uncertainties about what it means to be a doctor in the 21^st century?  Hafferty has described the confusion between the various conceptions of professionalism (2), indicating that to some professionalism is an identity and set of values, whereas to others it is a set of attitudes and behaviours. Medical students also employ different discourses when considering professionalism with some focussing on more superficial aspects such as how they act or appear, whilst other students have more complex and embodied understandings(3). 

To some professionalism is an identity and set of values, whereas to others it is a set of attitudes and behaviours

Let us consider the portrayal of alcohol consumption by medical students in social media. We know that excessive alcohol consumption has a long history in the culture of medical schools.  The Pithotomy Club, a  John Hopkins Medical School student society formed in Sir William Osler’s time(4), had a cherub on a beer keg as its emblem, and an annual revue, the Pithotomy Show, which ended in a ‘beer slide’(5).  (Forthcoming) research by Black and Monrouxe (6) finds that some medical students in the UK feel compelled or coerced by their fellow students to drink alcohol or take more than they had intended. Although there are concerns about the alcohol consumption of medical students and doctors (7-9), the culture in medical schools which facilitates this is rarely examined.  An online survey of medical students in the UK in 2012(10) found that only 22% thought that their medical school promoted a healthy attitude to alcohol. Is it surprising that some of the students thought that medical schools were more concerned about image than student well-being given the preponderance of messages about not sharing images of alcohol consumption through social media combined with a tacit acceptance of a pro-alcohol culture?  Students sensed that being seen to behave badly may be considered worse than actually behaving badly.  That is, the portrayal of a ‘professional demeanour’(11) was seen as more important that the actual behaviours of medical students. So when we consider the portrayal of alcohol by students in social media, might students have a more complex understanding of this than the restricted discourses often promulgated by their schools?

Is it surprising that some students think that medical schools are more concerned about image than about student well-being?

Next let us consider whether we should be concerned that personal information, not usually revealed in the consultation, may be self-disclosed through social media profiles. Thompson et el. (12) in their 2008 study of the Facebook profiles of medical students and residents in Florida were the first to postulate that the revealing of sexual orientation and political views through social media could be construed as unprofessional.   Professional boundaries are normally seen as either crossed (when no harm is done to the patient) or violated (where harm does occur), but we have no evidence that online self-disclosure through social media profiles affects subsequent consultations (13).  Still, the warnings persist.  In the study reported this month, Jain et al. (1) looked at perceptions of the expression of sexual orientation. We know that homophobia exists within medical cultures (14, 15) and that young people use social media to form networks to support them in dealing with the homophobia they meet in offline life (16). It would, therefore, be quite concerning if we were to recommend without good reason that medical students should be cautious about expressing their sexual identity online.

We have no evidence that online self-disclosure through social media profiles affects subsequent consultations

More generally,  discomfort over the disclosure of personal information is in keeping  with the tensions Frost and Regehr (17) describe between the discourses of standardisation and diversity in medical professional identity.  Is concern over releasing one’s sexual orientation or other personal information evidence that those leading medical schools, implicitly or otherwise, believe we can (or desire to) produce ‘neutral doctors’ (18) or ‘vanilla physicians’(19) who are able to leave behind their own personal values and socio-cultural backgrounds?  If so, then it is no wonder that social media is seen as a threat to a process of socialisation which Beagan (18) describes as in part involving isolation from all wider networks who might remind students of their previous identities. 

Discomfort over the disclosure of personal information is in keeping with tensions between the discourses of standardisation and diversity in medical professional identity

When we are online, just as when we are offline, we must always respect the dignity of our patients and colleagues. Beyond this, regulating and advising on behaviour in social media risks appearing, as Lerner states, ‘alarmist’(20). There are alternatives. McCartney suggests that ‘doctors, like other citizens, are entitled to express opinions online and one effect of the undoing of the medical god-complex has been to humanise medicine and populate it with doctors who are fallible but professional’(21).  Ballick describes such an approach as ‘rather thoughtful and subtle’ and acknowledging of ‘the complexity of online life’ (22).

If we recognise that ‘becoming a professional is an interpersonal and complex activity’(3) then we should aspire to research and guidance on social media and professionalism which reflects this.

Key quotes:

So when we consider the portrayal of alcohol by students in social media, might students have a more complex understanding of this than the restricted discourses often promulgated by their schools?

It would, therefore, be quite concerning if we were to recommend without good reason that medical students should be cautious about expressing their sexual identity online.

Is concern over releasing one’s sexual orientation or other personal information evidence that those leading medical schools, implicitly or otherwise, believe we can (or desire to) produce ‘neutral doctors’ (18) or ‘vanilla physicians’(19) who are able to leave behind their own personal values and socio-cultural backgrounds? 

When we are online, just as when we are offline, we must always respect the dignity of our patients and colleagues.

If we recognise that ‘becoming a professional is an interpersonal and complex activity’(3) then we should aspire to research and guidance on social media and professionalism which reflects this.

1.            Jain A, Petty E, Bjaber R, Tackett S, Pukiss J, Fitzgeral J, et al. What is Appropriate to Post on Social Media? Ratings from Students, Faculty and the Public. Medical Education. 2013.

2.            Hafferty FW. Professionalism and the socialization of medical students. In: Cruess R, Cruess S, Steinert Y, editors. Teaching medical professionalism. New York: Cambridge University Press; 2009. p. 53-73.

3.            Monrouxe LV, Rees CE, Hu W. Differences in medical students' explicit discourses of professionalism: acting, representing, becoming. Med Educ. 2011 Jun;45(6):585-602. PubMed PMID: 21564198.

4.            Jarrett WH. The Pithotomy Club: RIP. Proceedings (Baylor University Medical Center). 2011;24(1):35.

5.            Harrell R. History of The Pithotomy Club 2009 [29/9/2013]. Available from: http://www.pithotomy.com/history.html.

6.            Black L, Monrouxe LV. ‘Being sick a lot, often on each other’: students’alcohol-related provocation. Medical Education. in press.

7.            Boland M, Fitzpatrick P, Scallan E, Daly L, Herity B, Horgan J, et al. Trends in medical student use of tobacco, alcohol and drugs in an Irish university, 1973–2002. Drug and Alcohol Dependence. 2006;85(2):123-8.

8.            Keller S, Maddock J, Laforge R, Velicer W, Basler H. Binge drinking and health behavior in medical students. Addictive Behaviors. 2007;32(3):505-15.

9.            Thakore S, Ismail Z, Jarvis S, Payne E, Keetbaas S, Payne R, et al. The perceptions and habits of alcohol consumption and smoking among Canadian medical students. Academic Psychiatry. 2009;33(3):193-7.

10.          Rourke E. Work hard, play hard: Medical students; and schools' attitudes to alcohol. Student BMJ [Internet]. 2012 29/9/2013. Available from: 10.1136/sbmj.e5326.

11.          Snyder L. American College of Physicians Ethics ManualSixth Edition. Annals of Internal Medicine. 2012;156(1_Part_2):73-104.

12.          Thompson L, Dawson K, Ferdig R, Black E, Boyer J, Coutts J, et al. The Intersection of Online Social Networking with Medical Professionalism. Journal of General Internal Medicine. 2008;23(7):954-7.

13.          Mostaghimi A, Crotty BH. Professionalism in the digital age. Annals of internal medicine. 2011;154(8):560-2.

14.          Rose L. Homophobia among doctors. BMJ: British Medical Journal. 1994;308(6928):586. BMJ: British Medical Journal.

15.          Kan R, Au K, Chan W, Cheung L, Lam C, Liu H, et al. Homophobia in medical students of the University of Hong Kong. Sex Education. 2009;9(1):65-80.

16.          Hillier L, Mitchell KJ, Ybarra ML. The Internet As a Safety Net: Findings From a Series of Online Focus Groups With LGB and Non-LGB Young People in the United States. Journal of LGBT Youth. 2012;9(3):225-46.

17.          Frost HD, Regehr G. " I AM a Doctor": Negotiating the Discourses of Standardization and Diversity in Professional Identity Construction. Academic medicine: journal of the Association of American Medical Colleges. 2013.

18.          Beagan BL. Neutralizing differences: producing neutral doctors for (almost) neutral patients. Social Science & Medicine. 2000 10/16/;51(8):1253-65.

19.          Duffin J. Lighting candles, making sparks and remembering not to forget. In: Wear D, editor. Women in medical education: An anthology of experience. New York: State University of New York Press; 1996. p. 33-46.

20.          Lerner BH. Policing online professionalism: Are we too alarmist? JAMA Internal Medicine. 2013;173(19):1767-8.

21.          McCartney M. How much of a social media profile can doctors have? BMJ. 2012;344.

22.          Balick A. The Psychodynamics of Social Networking. Bainbridge C, Yates C, editors. London: Karnac; 2014.