A New Refrain

A New Refrain: entering The Walking Gallery

I was honoured earlier this year to be invited by Regina Holliday to forward her a jacket for inclusion in The Walking Gallery.

Regina describes The Walking Gallery thus:

Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare.  This walking wall of [212] individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts.  They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience.   They are providing a patient voice, and by doing so, are changing the conversation.

While creating national health policy medical professionals and government officials are often more reliant on aggregate data sets, bar charts, graphs and statistics, rather than the whole picture of care, the personal patient narrative and the individual human face.

The Walking Gallery movement hopes to diversify the source content that is used to create the foundation for patient centered care policy, by infusing art imagery depicting a unique patient history or personal story.
Here’s a lightly edited extract from an email I wrote to Regina as I endeavoured to alight upon a theme for her work:

Who is the professional me, and what’s my Walking Gallery story?

Perhaps it has something to do with connections.

I’m not a doctor. I do not work for a pharmaceutical company. Right now, I’m not a patient.

Yet it is my belief that the evolution of medicine (as an enterprise, as a science, as well as the primary focus of improving patient outcomes and helping people stay well, and where possible get better) is being driven by the social turn in communications that digital technologies have engendered.

That’s perhaps why I was interested in bringing cross-constituency voices together in #hcsmeu.

This was the first stage for me, I suppose. I wanted to be a part of something that would connect people who have things to say about their healthcare experiences that other people with whom I was connected needed to hear, but which they were unlikely to encounter via their own networks.

The second stage of the journey – and I’ll call it that because it emerged from my experiences, although not exactly synchronously – has something to do with my obsession with how best to provide seekers of healthcare information with reliable, relevant, gold-standard evidence-informed, patient-focused, outcomes-oriented, high quality data.

Stage three… is a work in progress (isn’t everything?) and it is about outcomes, not (just) conversation.

My image?

I have a Marshall stack in my mind (the cool lettering is trying to spell something… can’t see what yet; I don’t have a multistack like this at the moment, but I do have one of these), with a 3.5 inch cable being plugged into it. (My guitar :))

Something to do with vital health information being unplugged from the people who need it.

Disconnected.

From my ramblings, Regina Holliday produced the astonishing image pictured above. It has captured many of the things that define me personally (books, beaches, the means of getting a barbecue going, and a small glass of something inspirational — perhaps a well-made beer or bourbon) and professionally: a narrative concerning the nature of social health that we are writing collectively in the present tense through our work online and offline.

In Regina’s painting, I sit before two people in hospital gowns who seem to me expectant, but also encouraging. Are they seeking information? I note that my mouth is closed. I am neither singing, nor speaking, yet information is being conveyed through me by means of the healthcare hashtags that are emanating from my guitar (as the number three, perhaps? A work in progress, as described above). Yet something is wrong. The guitar is unplugged; the amplifier (which bears the #hcsmeu hashtag) is silent. In the background, Big Ben is chiming midnight.

I will leave it to you as the viewer to describe the implications of what you see, and if you’d be kind enough to share your thoughts as a comment to this post, I would very much appreciate it.

‘A New Refrain’ speaks to me in many ways, and some of them are challenging. I will expand upon this below in due course after further reflection, but for the time being all that remains is for me to thank Regina for inducting me into The Walking Gallery as its first UK representative, and to rededicate myself through my membership to my professional and personal commitment to making the best health information discoverable and accessible to those who need it most.

3 thoughts on “A New Refrain: entering The Walking Gallery

  1. More thoughts, beginning with the title:

    *A* new refrain: one of many voices

    A *new* refrain: a novel discourse

    Anew; refrain? what’s stopping you from starting again? Appeals to my #failbetter worldview.

    Anew / refrain: this gives me pause for thought within the context of #hcsmeu which whilst it remains one of the leading sources of information concerning digital health innovation on the social web, has failed as locus of activism (as is sadly signified by the fact that the #hcsmeu amplifier stack in the picture is disconnected. Its function is not being utilised, and it stands mute). That’s no-one’s fault in particular (other than mine, perhaps, but I’d neither the desire nor the right to hoist my own agendas on others), but we’re not getting any younger, and Stuff Needs To Get Done. So: where next?

    So, we’re all sitting on the information. For me, the books here are metaphors not for knowledge in the form of physical artefacts but the fact that health information is all around us, but we neither necessarily see (i.e. discover) it, nor use it in the way in which it was intended to be consumed (which is not always a bad thing, but which should give us pause for thought).

    Secondary and tertiary meanings also suggest themselves to me in the fact that our own health records are a ‘closed book’ to us, and that we are not always aware of the totality of data that streams from our own bodies even though they are obviously part of what constitutes our identity. The need for self-management and self-awareness are conjoined here.

    Finally, the way those hashtags form the number three do remind me of the tripartite structure I used when trying to order my thoughts in the email to Regina excerpted above.

    Future health is a work in progress, and the parts we all play are still being written: by us, by others.

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