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.
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.