Censorship, or Duty of Care? “Little Feet”, Blogging on an Acute Mental Health Inpatients Ward.


This blog is inspired by a post I have read today by @Chaosandcontrol, who blogs as Little Feet. Please do read the original post and comments in their entirety, and excuse me for quoting from it in addition.

Here, Little Feet describes her actions in  password protecting her entire blog:

I was readmitted to hospital on 28 December and discharged today (3 January). On 29 December, I was notified by staff that my blog had come to their attention. Staff read through the archives and my phone was confiscated for 24 hours. I made a verbal agreement with staff that I would not blog while I was in hospital.

She then posted about how because of this lack of privacy, she no longer felt safe to continue with her blog. She has currently stopped. I have so many things to say about this short statement. Im afraid they may come tumbling out helter skelter, so please bear with me.

Staff probably defend their actions by claiming they are acting to protect either the organisation (and staff), the patient, or the other patients. Each of these defences relies on slightly different clinical reasoning. Let me go through them.

First, let us consider Maslow’s famous hierarchy of needs.

An individual travels up this pyramid  from a baseline of meeting physiological needs, through safety, then social and emotional needs towards self expression and self actualization. By transferring the principles contained within this model, we can look at the organisation’s equivalent succession of needs within the social space, using a term coined by Jeremiah Owyang at the 2011 Leweb conference in Paris- the ‘Social Business Hierarchy of Needs’

If you haven’t got 20 minutes to watch the video, you could look at the Slideshare presentation.

climb-the-social-business-hierarchy-of-needs-leweb-keynote-2011?player=js

What we can learn from this is that the hospital in which Little Feet found herself was still concerned with the bottom layers of the pyramid- those regarding security and safety, whilst Little Feet had progressed past these layers in her digital interaction and was performing at a much higher level, concerned with self-exppression and self- actualisation.

We can see  that because of this disconnect in the digital literacy of the staff and organisation, and the population it is serving, the efforts by the staff to take control of the situation by using their power over their patients was (expectedly) experienced as oppressive by Little Feet, and also by the blogging community leaving comments on Twitter and on the blog itself. I am sure this was not the way they wished to be experienced, as I am sure they are good people who are just terrified by this new technology and way of communicating. But actively preventing someone from operating on the higher levels of Maslow’s pyramid is never going to be experienced as anything but oppressive, and services need to wake up to this fact and work out how to deal with their concerns about safety and move along in their own journey with social media.

Learning about patients from sources other than from within the clinical relationship and information from friends and family WITHOUT EXPRESS PERMISSION is not on. We are able to work that out from first principles, because one of the pre-eminent concerns of healthcare professionals is consent. Without consent, we must tread very carefully in what we do, using reflection, interdisciplinary learning, and close regard for the legal and policy framework for what we do (e.g. sectioning, deprivation of liberty). Little Feet did not consent for the staff to read her blog. They did not happen across it as a blog by an unknown individual, they had inside knowledge at the time of reading of Little Feet’s clinical presentation. That’s not cricket.

It’s unethical- In the same way that we would be justifiably angry if we found someone has read a secret diary, EVEN IF WE LEFT IT OPEN ON OUR INPATIENT BED we can have an expectation that clinical staff will form their clinical opinions based on presentation, symptoms, and medical history.

Discovering additional information about our clients is one of the cautionary tales warning clinical staff (and teachers for that matter) off from using SNS. The belief is that learning these insights will damage the therapeutic relationship, and cloud the (supposedly impartial) process of developing a diagnosis or formulation. That’s why your GP probably won’t friend you n Facebook.

It’s not that digital sources of information are irrelevant- but THIS SHOULD BE EXPRESSLY CONTRACTED WITH THE PATIENT.

What we present to the world is a series of faces, like the sides of a prism. None of them entirely explains our essential essence, each one is slightly different. How Little Feet appears in her blog is quite different from how she appears to her clinical team, I’m sure. After all, they are presented with a real life, flesh and blood version, perhaps with tears, anger, occasional incoherence, and frustration with the inherent power imbalance of mental health treatment- just like you or me in a mental health crisis.

The clinical team need to focus on the clinical presentation if they are to avoid bias, prejudice and all sorts of personal opinions from creeping unseen into the clinical situation. That’s why we have such developed conventions for clinical consultation. Contracting to source additional information pertinent to the clinical relationship could be appropriate, but it must be done with consent.

So, we can see that protecting the patient by removing her ability to express herself and self-actualize runs counter to the principles of recovery, which are about supporting progress up Maslow’s pyramid, not forcing someone down it. We have also seen how clinical treatments should not use information gleaned from  relationships outside the clinical arena without consent.

Protecting other patients is a little more difficult, in that we know that they will have a range of digital literacies and understanding of the consequences of being referred to within the blog. They will all occupy different levels of Maslow’s hierarchy. Confidentiality is a complicated issue, becase someone can be identified by a clinical picture (if unusual enough) just as easily as from a photograph. The difference here is that the staff hold the responsibility for protecting confidentiality, service users do not. That is why at the start of clinical group work, protecting confidentiality is generally introduced as a ground rule- to make sure it is in the mind of the participants.

However, what exactly are the patients here being protected from? In fact, there is no difference between Little Feet’s potential to discuss her descriptions and those of other patients. It is the medium of the descriptions that worries the staff.

Where conversations about services are confined to individuals, organisations feel happier because they are perceived as less threatening. What is frightening for the organisation about digital media is related to their lack of understanding of it, as discussed above. The old ‘command and control’ model of communications is so prevalent in health organisations dealing with digital media because they are operating in an unfamiliar medium and are just on the initial steps of Maslow’s pyramid.

There is excellent clinical practice out there, and there are both practitioners and organisations whoa re prepared for the journey they must take in understanding social media. But there are so many others who still haven’t framed the question, never mind worked out an answer.

Little Feet’s blog has served a critical purpose with the final post. It illustrates the difficulties that are facing health organisations who are treating individuals with much higher digital literacy than themselves. It’s time we woke up and started to play catch up in this arena.

What are your experiences of this?

If you would like to know how I can help your organisation or clinical staff move on in their understanding of digital and social media, get in touch at tech4health(at)gmail(dot)com.

Blogs for Breakfast, #blogsforbreakfast at the #loveartsleeds Festival


I am very excited to say that I am a pannelist at Blogs for Breakfast, on Thursday 13th October in Leeds, an event which is part of the Love Arts Leeds Festival.

The purpose of this event is to

…debate how digital media is affecting how we communicate about mental health and wellbeing both personally and professionally:

• Blogging about personal experiences

• Campaigning on Facebook

• Personal and professional identities on Twitter

We hope to offer advice and information to anyone who would like to know a little more about how to use Social Media tools, in order to express themselves.

It’s exciting to me, because I have found blogging here to be an excellent tool for professional development. Using Social Media has allowed me to make contact with a “Community of Practice” online that would never be achievable off-line. I regularly collaborate with other OTs and healthcare professionals from all around the world. We use Facebook Groups and Pages, Google Groups, G+ Hangouts and Huddles, Skype, Twitter, and Blogs in order to discuss ideas, formulate projects, and disseminate research and best practice. The choice of tool is often dependent on the information which warrants a discussion, and flexible ability to deploy a range of tools means almost any situation can be accommodated.

Many of these goals can be achieved by more traditional means, but if we look at published academic journals, the time frame between submission and publication can be as long as 2 years. This allows for peer review, it is true, but it slows the progress of information through a profession, and subsequently there is not open access to the published research as most Journals require paid subscriptions. The process using blogging has less guarantee of academic peer review, but blog audiences are remarkably good at calling out errors in interpretation and analysis- the comments on blogs tend to show interesting discussions around the topic by other contributors whether professionals, service users, carers, or others. In addition, links can be made for professional networking opportunities with other people with similar interests, which would take attendance at a huge number of conferences at huge expense to replicate!

Mental Health Recovery means something different to everybody. Self expression is vital to wellbeing. For many people, writing may feel like a very difficult thing to start. But I believe that using a photoblogging site (e.g. FlickR) could offer opportunities for someone who wanted to document their story in other forms than words.

Video blogs can be used (e.g. YouTube channel) and can act as a diary, attracting people with similar life experiences, and sharing about different cultures. So blogging can be used even if you fear your writing skills are not up to scratch, or you would like to make your blog accessible to people who might have difficulty reading it.

I am frequently asked about the issue of personal and professional identities on Twitter and other Social Media platforms. My Twitter presence reflects my increasing comfort with open-ness about my shared personal and professional interests, but using Social Media is a process and for many people, there remains suspicion about having profiles which reflect both their personal and professional identities. To an extent, I share this feeling, hence I maintain separate personal and professional blogs. It will be interesting to debate this further in the context of the event.

If you would like to join us for this event, there are still tickets available. I hope to see you there.

Other Social Media reactions to this event:

Emachi Enje (@WellnessHQ) has used blogging in his personal Recovery story

I discuss this event at my personal blog which has helped me transition as a person with a disability.

Social Media and the Medical Profession


I have followed with interest an excellent reflective post by Anne-Marie Cunningham, who wrote about some “overheard” Tweets from doctors, who were using language that some people could be offended by.

“The terms used were ‘labia ward’ and ‘birthing sheds’ to refer to the delivery suite where women give birth, and “cabbage patch” to refer to the intensive care ward where many patients are unconscious.”

I have to thank Anne Marie for raising this issue. All the contributions to the debate have been very interesting to follow, as both the original Tweets and the debate that follows shed light on how much progress has been made in the education of medical professionals in the use of social media.

It has been interesting to note the different tones of the contributions on the blog, on Twitter, and on the Medical Registrar’s Page on Facebook.

I don’t think this is an issue confined to medical staff, I think all healthcare workers are still finding their feet in social media and appropriate behaviours (Lane & Twaddell, 2010). As with the ‘crowded bus’ analogy, I always think “would I be happy to say this in the lift at work?”, when posting in social media. As one commenter on the Facebook discussion stated:

“Discussions like this that take place in forums frequented by the public paint the medical profession in a decidedly un-professional light.”

Many posters agreed that

“I guess we like to think of Facebook and twitter as having a pint with our friends, whereas actually what we post on here is more like shouting something at the top of our voices on a crowded public bus. I don’t think this is about ‘thought police’ but about courtesy in public and the reputation of our profession.”

It’s a topic discussed with increasing frequency in the literature, as our patients and service users become more tech savvy, so must we (Brown, 2011 and Nacinovich, 2011).

As e-patient Dave so succinctly put it, in his response to Anne-Marie’s post,

“I say, one is responsible for one’s public statements. Cussing to one’s buddies on a tram is not the same as cussing in a corner booth at the pub. If you want to use venting vocabulary in a circle, use email with CC’s, or a Google+ Circle.

One may claim – ONCE – ignorance, as in, “Oh, others could see that??” It must, I say, then be accompanied by an earnest “Oh crap!!” Beyond that, it’s as rude as cussing in a streetcorner crowd.”

And equally sound advice from a poster on Facebook,

“Some of you need to really take a long look at the dehumanising nature of your jobs and try to rise above it… Social media makes the world a smaller place. Sometimes you should refrain from writing down your thoughts in public places like to FB and Twitter.”

If you want to post more… ahem… *colourful* content, my advice would be to set up closed groups in Facebook and only invite other doctors, or have profiles under nom de plumes and network on high privacy settings with people who you know IRL only. Otherwise, if we are to pursue congruent online and offline identity (and I think we must, for sanity’s sake) then be aware that everything you say online is actually covered under the same code of ethics and professional demeanour that covers the rest of your career. What you post privately today may well become available tomorrow, as privacy settings can be altered with frequency, for example on Facebook. Inappropriate online comment could be subject to complaints from members of the public, other professionals, patients, carers etc., and could lead to disciplinary action. I would counsel against posting comments such as the following, if you value your future career

“wow, really… if you’re offended, fuck off and don’t follow them on Twitter, and cabbage patch to refer to ITU is probably one of the kinder phrases I’ve heard…”

There is emerging literature available to guide the use of social media in medical education (Farnan et al., 2009; Landman, Shelton, Kauffmann, & Dattilo, 2010)

Blogging, and Anne Marie’s blog is a fine example, has been stated to be an appropriate developmental tool for clinicians (Bodell et al., 2009) and it would be a shame if clinicians failed to take advantage of such tools for fear of being accused of misconduct.

N.B. I have chosen not to identify posters who have written content which portrays them in a less than professional light.

  • Edit [17/09/11] Today’s Telegraph commented on this post, and has attracted interesting comments
  • Edit [18/09/11] Further discussion in the MSM today regarding this event, which is being dubbed #hcsmgate on Twitter.
  • Yesterday’s Telegraph discusses the terms used as “banter”, and additionally yesterday’s post linked to above is available, as is a dictionary of medical terms used by some doctors. h/t @health20paris for Tweeting the link.
  • Today’s Mail on Sunday discusses whether terms such as those used by the doctor @amcunningham blogged about have any place in modern, patient-centred care. h/t @Pillmanuk for Tweeting the link.
  • It is interesting to see such polarisation in the comments between people who say black humour is a way of managing stress and we should all “lighten up”, and people who think that patients deserve respect in all settings, and that includes being protected from abusive, derogatory and bullying talk. I have to say, I agree with the latter view. Comments in public should at all times uphold the values of the profession.
  • Edit [18/09/11] I responded to this blog post regarding the topic http://runningahospital.blogspot.com/2011/09/storm-brews-across-pond.html?m=1
  • Edit [19/09/11] further comment from the blogosphere:
  1. @PaulLevy’s post in Not Running a Hospital
  2. @Thinkbirth‘s post
  3. @sarahstewart‘s post
  4. @laikapoetnik  in Laika’s MedLibLog

all are recommended posts.

References

Bodell, S., Hook, A., Penman, M. and Wade, W. (2009). Creating a learning community in today’s world: how blogging can facilitate continuing professional development and international learning. British Journal of Occupational Therapy. 72(6) June pp. 279-281. Retrieved September 16, 2011, from http://docserver.ingentaconnect.com/deliver/connect/cot/03080226/v72n6/s7.pdf?expires=1316166667&id=64421118&titleid=6174&accname=College+of+Occupational+Therapists+Referrer+URL&checksum=1511D65AE17D156D5E8AF7A6E7F47B11

Brown, T. (2011). Are you a digital native or a digital immigrant? Being client centred in the digital era. British Journal of Occupational Therapy 74(7) July, p.313. Retrieved September 16, 2011, from http://docserver.ingentaconnect.com/deliver/connect/cot/03080226/v74n7/s1.pdf?expires=1316165615&id=64420866&titleid=6174&accname=College+of+Occupational+Therapists+Referrer+URL&checksum=54AC84699E58AB65668EDD2090BBC134

Farnan, J. M., Paro, J. A. M., Higa, J. T., Reddy, S. T., Humphrey, H. J., & Arora, V. M. (2009). Commentary: The relationship status of digital media and professionalism: it’s complicated. AAMC Academic Medicine Journal of the Association of American Medical Colleges, 84(11), 1479-1481. Retrieved from http://journals.lww.com/academicmedicine/Fulltext/2009/11000/Commentary__The_Relationship_Status_of_Digital.11.aspx

Landman, M. P., Shelton, J., Kauffmann, R. M., & Dattilo, J. B. (2010). Guidelines for maintaining a professional compass in the era of social networking. Journal Of Surgical Education, 67(6), 381-386. Elsevier Inc. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21156295

Lane, S. H., & Twaddell, J. W. (2010). Should social media be used to communicate with patients? MCN The American journal of maternal child nursing, 35(1), 6-7. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/20032752

Nacinovich, M. (2011). Rx to communicate: The E-patient will see you now. Journal of Communication In Healthcare, 4(2), 65-65. doi:10.1179/175380611X13097840494027

Excuse me, I think I just did a MOOC.


I stumbled across this description of a MOOC when reading this OT blog last week.

Blimey. I thought. That’s what I’ve been looking for. In fact, that’s what I’ve been doing!

In fact, I haven’t. Not by a long chalk. Helen has been participating in an incredible event, called #eduMOOC2011, which is an eight week course now into it’s fifth week. So it’s not exactly what I’ve been doing, but rather, something I wish I’d been doing…

It really is a great concept aiming to develop networked learning. This reminds me of how knowledge is spread through insect colonies.

In a bee hive, for instance, the various worker bees go out to find food. On their return , they perform little bee dances to tell the other hive members about what the food is, where it is, how far you have to fly, and all the other stuff bees like to know. Excuse my rather vague handle on this- I’m no entymologist!

My point is, that this is how social media works. Like the bees, we tell others in our networks where the good information is, and others then follow our pointers to events, to URLs, to engage in “clicktivism”, whatever.

Gradually we develop trusted networks for curation of content and they become a short-cut- we know we can trust their opinion on how useful the content is.

(Question- do bees ever tell lies about food? or do they have better and worse bees/colonies for successfully transmitting information? I would love to know!)

Over time, we develop networks of people who are looking for similar content. Like the bee hive, we are greater than the sum of our parts, because we can utilise far greater “processing power” by collaborating together online than we can as individuals.

Okay, I’m going to leave the analogy there, and talk about MOOC.

As the video above explains, MOOC is just a way of describing the process of acquiring knowledge which, in previous times, may only have been available through learned institutions, and through diligent attention to books, journals, or lectures. People without access to these forms of learning could therefore be left behind. But as this clip from RSA shows, how we conceive of education now has to change, for several reasons.

  • Cost. University education is now very expensive. For people who do not wish to become endebted, it could be the case that this form of learning is an effective way to continue to develop and learn without attending university. Perhaps universities will spot this and offer a discounted rate for people to sit qualifications without access to their limited spaces in lecture theatres?
  • Social exclusion. People who experience stigma because of mental illness or other reasons could find that they are able to learn removed from the pressures of the social environment of a university? I wouldn’t want to recommend this as an adaptive response to social phobia or fear of stigma, but I can imagine circumstances (Asperger’s?) where this would make accommodation for someone’s particular needs or sensory sensitivities.
  • Lifestyle. People who are looking after children or other family members may wish to work from home, in hours of their own choosing. This could offer a solution for those groups, much like the OU does, but again, at less cost.
  • Bad experiences in formal education. So many people have felt excluded from education due to their bad experiences at school. Some of them may not have been diagnosed with learning difficulties such as dyslexia, dyscalculia or dyspraxia until later in life, and suffered bullying in school from pupils or staff. Many people who have had poor experiences could be encouraged to gain basic skills, or update their knowledge ahead of trying out more formal routes of education, in a supportive network of people.
So what is my point?
What I am thinking of, as ever, is the application of this understanding to my OT practice and to the possibilities for growth it represents.
  • I love learning. I intend to continue learning all my life. I am determined to engage with the idea of a MOOC, just to see where it takes me.
  • I would love to see an OTMOOC event shape up- perhaps after this year’s virtual exchange we could plan one to culminate in next year’s virtual exchange? However, for the time being, I’m going to MOOC about using the online resources I already have.
  1. My network of OT blogs that you can see on the right hand side is a good place to start——–>
  2. And if you are dipping your toes in the water of online technology as an OT, I would strongly urge you to complete this short survey to provide us with more of an evidence base about how our profession is using online tech (add your email at the end if you want to be entered into the prize draw for an iPod!)
  3. Also, are you aware of the OT4OT blog? It’s a good place to share information about how OTs are using online technology.
  4. Coming up is the 24 hour OT Virtual Exchange- widely billed as the conference you can attend in your pyjamas- on 26th October 2011, 24 presentations from around the world highlighting a range of different OT approaches available at a computer near you, and at absolutely no cost. Check out the facebook group.
  • As ever, we need to remember that there are possibilities for practice within this model.
  1. One of the roles of the OT is in health education. We can offer our unique occupational perspective through this technique as much as any other.
  2. Education about aids and adaptations can be hugely useful. I have lost count of the numbers of people I have shown products to through websites when they would never have set foot into a mobility showroom. We could make great strides in ensuring our service users have access to this information online.
  3. Perhaps videos of people who are doing Occupational Therapy, to show how this benefits them? (With all appropriate consents etc.)
Once more, this doesn’t solve the problem of digital exclusion. That has to be tackled. But as more and more people have access to technology such as smartphones, we can hope that the day is not far off that we can ensure fair and equitable access to information.
On that day, we can all MOOC together.
I like the sound of that. Do you?
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