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[goglobalsmizz]

Sydney makes me feel all like this: (excited)

[goglobalsmizz]

Chris O'Brien Lifehouse

How is care designed through spaces?

What does it suggest when a place has good design in its space, compared to normal hospitals where it’s *just* a substandard clinical design. That leaves you and the place feeling bland, feeling institutionalised?

You could argue that it doesn’t make much difference in the great scheme of things, given that within cancer care (for example) it’s saving your life. Does it matter what the space and the materials look like?

I remember when I was doing my AS levels at high school, we got the option of “AS level in science for public understand” It was a great class- and one thing we had to do was use science knowledge with research criticality and present debates from a psycho-social perspective of issues. One things I had to write an essay on was whether sick-building syndrome was real. At the time I guess I was a bit skeptical, but now experience and a much deeper knowledge of social determinate and driments, and the power of architecture and space, and asbestos has changed my perception. Of course a building could technically make you sicker. Think mould on the walls in tenants houses with crappy landlords.

Yes, the visual and spatial concerns matter.  There’s endless studies that show having a view from a hospital bed increases the likelihood of a faster recovery (https://www.sciencedirect.com/science/article/pii/S0360132312001758), the influences of landscape features on visitation of hospital green spaces makes the perception of care better ((2017) International Journal of Environmental Research and Public Health)

The visual language of healthcare fascinates me no end. How different countries do it, how we negotiate it, how we hack it, how we begin to love it. 

 The differentiation we make. So the hospital space is super clinical, and the Maggies Centre is purpose design and uniquely built. For example, why isn’t the contemporary art work from the local contemporary art gallery collection in the hospital, instead of the Maggies centre?

Jane generosity gave us a tour of the Lifehouse Cancer Centre, a place which she knows intimately.

I dragged Vanda with me, I said, “it’ll be interesting!” I’m sure this is  exactly what she had in mind when I said we’d explore Sydney together. We get there too early to meet Jane and wander around the campus site.  There’s a fancy McCafe, where all the ER staff are getting drinks and cakes.  It has a great working desk space. We get drinks and wander around the sites. There’s a hospital that looks like a cheap holiday resort in Spain. Maybe it’s the palm trees that gives it that vibe. When we share our observations with Jane she laughs. It’s not the point of reference she’s used to.

We walk around the whole Lifehouse building and come across Street art on the wall.

I’ve never seen street art on a hospital before. Murals, yes. But there is a significant difference between mural and street-art. Street art is cool, rebellious, it has it’s beat to the ground up. Murals tend to be a safe version of wall-art. It’s history lies in a different part of activism history to street-art. but they did start off more political - but the mural has lost its edge as a more fuzzy & controlled art-form. Groups & institutions, like charities, schools and hospitals, like murals. They think it represents community, often made by someone who *might* have spoken to some people there to design it. So they’d like to think it’s a collaboration - but as Vanda said when we wandered underground in Sydney & the walls were painted by a never ending mural - it has a communist vibe. It’s like pretending things are cool - a mask. But underneath that, is a power-battle. Street-art seems to somehow escape this rebranding, this fuzziness. It still feels edgy - maybe it’s the spray paint material?

I make a mental note of street art.

And we meet Jane in the lobby. She takes us in a glass lift. This changes the hospital vibe for sure. Even in good hospitals in the UK, the lifts tend to be big, metal and dark.

She takes us to the chemotherapy lounge and gets the head nurse, K. , to give a tour. (they work together on research papers and projects together now). She tells us it used to be open plan, but now everyone gets their own booth. It’s very private. If you’re lucky - you get a seat with a window view.

There’s a beautiful vine flower bush growing over the window, giving a different perspective of being in Italy along the coast or something.  I think back to the chemotherapy departments I’ve been in. One had a conservatory, which was nice in a way for the natural light but there was nothing to look at. Just the carpark of Doncaster. The other 2 had windows but they were built up high. All these spaces were mostly open planned. Different types of “comfortable leathery” deep chairs. I remember just watching tennis, wimbledon, on a  communal TV. Other times I got told I should bring a book/magazine.  

K. explains why things are like they are. It makes sense. Chemo is highly hazardous and toxic. For clinical reasons. I ask to take a photo of the empty half overflow section, and she moves the magazines out of the way to make it look tidier. Weird how we think items outside of the hospital can make the space seem less “clinical” or messy.

We say how much we like the wallpaper, which is drawings of people sketched all over. It’s contemporary. Like an art piece almost. K. says they have drawn themselves on pieces of paper and have put them onto the wall like a lil where’s wally. I love that idea. Hacking, personalising the space, putting identity back into it.

On the way out I notice near the self-checkin machines there’s a cool comic about cancer framed on the wall. I wonder about whether it’s available for people in print-out to take away and not just as cool art, as it captures something a lot of hospital literature doesn’t.

Jane then takes us to the “Patients only” space. It’s a room that’s like a library. Many shelves of books, 2 computers, an over and kitchen space and huge table with a massive 5,000 piece jigsaw on. At the window there’s models made from lolly-pop sticks, models of the hospital. Which is curious. Around the corner is a sleep area. I am impressed.

When I walked around a Maggies Centre in the UK, it was encouraged that people could just go there and sleep in front of everyone in the area. Just a place to take a chill in a social environment, not to be alone. And I always wondered why outpatients (& indeed general public space!) never had a space where you could have a little snooze. I can’t tell you how tired I am every time I’ve been at the hospital, even for just blood-tests. The subconscious worry and positioning of where you are takes its toll.

Jane says no healthcare professionals or hospital staff can use this space, it’s for patients only. I like that they have their own space. This is just so rare.

We leave and enter a huge open space, which is the support area. Here there’s everything: lymphodeama clinics, physios, occupational therapists, acupuncture, massage, support, and an amazzzzing gym. Better than our staff gym in Leeds.  Jane says there’s always personal trainers to help support you in whatever you want to do . Both Vanda and myself are really impressed. The view leaves a lot to be desired - but Jane has already thought this through. She wants to make a garden of sorts.

We go to leave. I notice now that the wallpaper is typography over layered into patterns. As a font lover, type-setter, I love it. Why does this make a difference to me? Why do I appreciate that the time and the focus has been taken to chose something as classy as this?

Everywhere we go I see piece of “art” but they’re placed and framed almost like interventions.  They’re not mounted on the wall. They don’t feel tired and aged like a lot of "hospital art*” does.

(* I hate that i’ve just called in “hospital art”, but what I mean here is that the general theme of what art tends to be placed in the institution - expressive abstract that’s done in natural and calm colours, or tried-and-tested landscape images. Rarely do we get contemporary art - and when we do it’s hidden away. Not given the agency for what it was made for in the first place. Very interesting) These hospital art interventions I am assuming is done through the Art-Studio - which is open for patients. Like art therapy, but the images on the leaflet make it look like a proper university art class. I hope it really is.

But it feels light and contemporary and more tasteful than what I normally see (what I normally see s something like a primary school work display).

What I do notice though, is that there’s a lot of silhouettes. Drawn people on the wallpaper, drawn profiles on tracing paper that hangs alone in the lobby, outline drawn tracings of people onto the window. It adds an energy but it’s an interesting thing to focus on.  

Given one of the issues with a major life-threatening illness, such as cancer, and how the treatment and the healthcare institution often make our identities feel transient and lost and/or stripped. Here we have a reminder, like ghosts, that people where here.  Maybe that’s a dark reading, perhaps they serve as reminders of people hanging in there - making sure that we can hack the system, and its environment by literally making it more person focused.

Jane shows us from the lobby which is a good few floors above other floors below and tells us how different areas are part of different hospitals and she needs 3 different patient numbers to enter 3 different places within the same building.  That separation is incredible to think about. Ownership, and responsibility. It goes to show too, that even though having a beautiful space with areas of ownership, and agency, DOES make a difference to your experience of care - it’s just so important to get the basics nailed too. 3 separate numbers for the same building is asking for a mistake to be made. And as we go to split up for the evening, Jane says how she did not like the idea of coming to this centre for her treatment. But as she went through her care, she grew to love the building and it’s people and community. That this place is also a part of her.

Such an incredible experience and observation, that the space moves her to continue to be a part of it  and is now on the board to help with maintaining and enhancing the vision and care. And of course, Jane has a lot of cool ideas and projects which need to be acted upon.

But even if we didn’t read any research on the positive effects of design / art in hospitals and recovery - just hearing how Jane felt through these spaces spoke volumes.

What is really interesting to take forward too, is that we have focused on design within architectural and spatial context. How the environment can generate this feeling of being cared for, being part of something. Maggies Centres are a great example of this. Lifehouse is a great example of hospital meets a Maggie’s centre vibe - meeting half way point between clinical and personable. Clinical and thoughtful. Business meets family/friends.

However, we look across the board to any institutions patient information - very few spend the same amount of time and understanding of design and experience through aesthetics to this area. Despite it being fundamental to consenting, understanding and experience and control.   All forms of caring, institutional as well as personal, require that attention be paid to purpose, power, and particularity. Identifying these three as the critical elements for assessing practices of care grows out of any understanding that takes care as a relational practice. As we think about institutional settings for care, we rarely invoke similar language about purposefulness or about power and particularity. And it is here where I am the most interested and why all of this exists in different forms, in different places, or in some areas not at all. And that dark-matter really interests me.

[goglobalsmizz]

Dr Joanne Toohey, Radiation Oncologist

Jane had helped me to connect with her radiation oncology doctor, Joanne Toohey. On Friday we both went to have a meeting with her.

The plan loosely was to talk through what i’ve been doing in my research, and practice, and  the issues I have come up against within representation of the radiotherapy pathway, and the all too complex : how much information is enough information & also the difficulty in the format of which information is given.

And at first I was nervous (as always, but even more so), but within 10 minutes of our meeting with Jane, Jo and myself in her consulting room, Jo had made me feel so welcomed that I kind of forgot that we didn’t fully know each other. I went through some of the issues I have picked up throughout my research (UK based) From patient information on average not living up to the national reading age of 9 (average UK radiotherapy patient information is written to as 14 year old standard). But even if you can forgive this… sometimes more detailed accounts are necessary - many centres don’t supply images or diagrams to contextualise or centre this information within some familiarity. This is problematic on any user-experience. Especially given that most people will know about chemotherapy & surgery but not so much about radiotherapy. And the unknown can lead to a lack of control, which can lead to anxiety and less compliance within the pathway.  

Jo asked me about these reading ages. Jane confirmed with me and said it’s also a government policy within the UK to try and aim all important reading items at the national average reading age (9). Jo was like wow! And brought up a webpage provided by https://www.eviq.org.au/ . This information is concise. you’d have web-options to make it bigger if you wanted it to be even easier to read.  It’s also detailed but in a weird way. It offers details without context, making it so that it’s difficult to interpret whether that would/is happening to you.  Having the potential to cause undue anxiety. 

It’s a responsive form, so you get the information as you click through. But to get to your treatment information sheet, you need to know which treatment *exactly* that you’re having. It’s written in a clinical way. Are you having hypofractioned treatment or conventional or concurrent!? I’d like to think everyone would know exactly what type of treatment that they’re having, but sometimes you forget, sometimes it’s not really emphasised in  those terms during your consultation, and sometimes you are just scared to ask any questions. I’ve been there. All ways. When a friend says, “will you have to do X-Y-Z?” And i say, “errr, I dunno. I didn’t ask!?” And i’m relatively knowledgeable in healthcare stuff. 

Jo told me it’s all written by doctors. And you can tell. And doctors print it off (sometimes) and go through it with their patients in a consultation.  Jo then says how it drives her wild. She has to “draw all over it” to make it personalised and to make sense for the patient. I loved that she used the verb “to draw”, not “write all over it/ cross things out” but to draw all over it. Like the patient information lacks so much context and information that she has to re-design it herself, right then and there, for each person. 

When I ask who makes these information sheets, she says it’s the Cancer Australia Alliance - a government high-up resource. They give information for any healthcare agency/institution - much like the NHS does (via NHS Choices). So it was interesting to see  that contrasted to us in the UK - given that each centre generates its own information leaflets. That makes sense due to the differentiation of practice between sites - and potential to make everything branded and personalised per centre. But I can’t help but think that this differentiation really highlights why people think it’s so hard to change practice.  In the UK to help each centre make their information better, would take a lot of effort - here in Oz, you’d just need to see the one group. 

I mention about how our information, once we’ve gotten over how it’s without much context, that the images are either none-existent - or  random/giving an obscure vision of whats to happen. We laugh, and Jo explains that also when she discusses treatment with the patient that she uses Genesis images to supplement the print-out text. She says she likes using it because everyone is smiling and it has a real position in them. Jane laughs and says, "that’s NOT what it’s like though. No one is smiling like that”  She has a point too. I mean in my clinical practice we have certainly laugh a lot in set-ups, but it’s person dependant and it’s an awkward experience that the prospectus doesn’t seem to acknowledge. It’s interesting what works for others and no so much. (more on this later / separate reflection).

Jo then proceeds to show us how she goes through her information consultation and what resources she uses. She says, she always gets the patients planning CT images up - and shows the patient their planned treatment and how their breath-hold assistance is working (during/after treatment consultations). (image matching between Cone-beam CT images taken on the machine on treatment day, comparing with the planning ct images)  She goes on to show how she talks about more complex things like heart-sparing and the assisted breath-hold technique. Again she uses the planning programs as a tool. I notice she needs actual visuals to try and explain to the person what is going to happen to them, in depth, and why.  I find this comforting and also it’s a relief to know that doctors need visual aides in order to believe they’re telling the patient enough information, at a level so they can understand, in order to consent to their treatment.

The way Jo describes the CT image - and the anatomy - she perfectly positions the patient into a person in control, and makes this 2D slice visually 3D where we are transported into that position. We know where we are, and what we’re looking at. That’s easy for me to say who is trained in this, but Jane confirms how it makes such  a difference and she goes from not knowing to really visually seeing and understanding the reasoning behind all the stuff that will/have happened.

Here it is obvious that people need and deserve control. Jane adds how it’s awful not having control and information is the one of limited tools that can help equip the person to be a person. 

I notice as we speak though, how Jo is constantly worried about whether this is the best way, and whether the information is *enough*. She says, “I am always wandering if this is too much information, or not enough, if this is the best way. How can I be better?”

The critical reflection on her informational practice is important and telling. I show them the stock imagery, the graphic aesthetics that constrain patient information in the UK and Jo bounces to show me how their centre is re-branding and turning from everything Blue to every Green (because Blue is just tooooo clinical and hospital) She shows me emails from the Dean of radiation oncology to others who see that the re-branded website is problematic - it’s so great to see how everyone acknolwedges the importance of how information is presented. How even the colour changes how people perceive their identity and experience.

Talking about how do we get experience across, how graphic languages helps / hinders this. Jo then talks about how one of her patients who was also an artist made a show about her experiences of radiotherapy - and Jo was taken back by seeing just how the experience had made her patient feel. That was achieved through the medium of art. I think back to one of the people I got to know after a talk and she announced to the room that since her radiotherapy treatment, she’s found herself taking photos of roadkill.

These are  harsh, tragic, enlightening and super vulnerable things to share with people. But it brings home to us all that the power of art can capture experience much more than any other research technique can (think interviews), how it can transport people to the other side to enhance empathy and also seeing the need to change why people’s reactions are like this/ what happened in their experiences?

We talk about the need for collaborative quality improvement, Jo gives me links to some good patient information design resources for Female pelvic radiation aftercare (made at the university of Sydney - in the psychology department (interestingly) - by Dr Fran Lubotzky ) and then we talk about working collaboratively looking at patient informational needs - how we make these more visual. with my research group. And we’re all excited. 

And What an amazing meeting. I left with a bazillion things I need to write about, thoughts, ideas, issues to highlight at home. And more than anything, Jo’s incredible openness completely changed how we are accessing healthcare. 

I think to how Jane’s consulting room is laid out.  Much like visiting the GP, her room is laid out as open as it can be. The wall has drawn pictures all over it. When I think to all of my own hospital consultations, I am alway (9/10 times) sat behind a desk - it reinforces a different power relationship. Like being sent to see the headmaster. There’s a really rigid formality. Occasionally I get a doctor willing to be less formal, more human, more relatable, more interested. But often it’s a Q&A session that seems to not be exciting anyone. Part of our problem in the UK, that seeps into how we believe clinical information should be presented - is this misunderstanding of professionalism and what clinical is.

  You can still be open, and formal and personable and be professional and maintain clinical integrity  - they’re not one or the other. And seeing Jo and her clinic and the hospital made me realise that it’s super possible with incredible experience results.

Thank you so much to Dr Joanne Toohey & Jane for an incredible meeting and hopefully super fun and important collaboration in the near future! 

[goglobalsmizz]

Chinese Garden of Friendship, Sydney

[goglobalsmizz]

Nyk Loates

The other day (Thursday) I got to meet Nyk. Nyk used to be my “boss”. He hired me via someone else who used to be in his team who saw me live-draw at Sheffield Doc/Fest. A few emails later, I was part of Nyk’s Capgemini Consulting family - as a “knowledge worker”. But basically a scribe.

It was and still is, probably one of the best jobs I have had. It was in this beautiful tall building in London that had a breathtaking skyline view. The sunsets there was something else. We had our own kitchen and chef, there’d be a team of maybe 4-5 of us, and we would turn a business room into a creative, connecting, collaborative and thinking space. I’d get to draw all over the walls (which most were whiteboards) and we’d think about how the clients' needs would be facilitated. It takes great skills of Nyk’s to anticipate and negotiate this and plan accordingly.

The great part of this job was, you only worked when you wanted too as well! So we had a calendar, and you’d nominate yourself to be on a team. And the team-leaders (People like Nyk) would choose whether they wanted you on that specific client-case or not.  But the days were long. I’d leave home at 4am, to get to the office for 8am-ish. And we’d work setting up the space and the day all day until the early hours of the morning. Then we’d go to a Holiday Inn, sometimes even have a drink! (hardcore!) and then go to bed for a few hours and be back at the office for about 6-6:30ish AM. We’d work with the clients and put everything together until 5-6pm-ish. And I’d head back to the north!

I was doing this job whilst I was managing some of the worst symptoms of my life. Drenching Nightsweats, fatigue that felt like my head was being pushed under water (like I was drowning, physically), really really bad nosebleeds and bone ache.  It was a confusing time. But I remain incredibly grateful for Nyk giving me a chance to work with him and his team, especially around that time when I wasn’t feeling too spiffy. I learnt a lot seeing that kind of facilitation, professionalism and being able to link creative ways of working with business & development,  and fast paced work there.

Around the time I was properly sick, Nyk got headhunted for an amazing job in Sydney. 

I’ve been following his Instagram life since. It’s full of adventure, hardwork and family life. Many offices/places with spectacular views!

So when he saw that I was coming to Sydney, he reached out and told me to message him when i was close/there.  And so I did because I knew it would be great to see him again.

He told me to go to the 3rd smallest skyscraper in Barangaroo (a gentrified new business area on the harbor - part ace bookstores and cafes/bars/restaurants/department stores and many important business buildings). I arrived with my friend to the address and looked up. Wow. I couldn’t believe how immense and well designed the building was. I said to Vanda, so this is where I leave now!

Nyk told me to meet him on the 38th floor, his floor & the reception would call him. They did just that, but the floors were so high that your ears popped as you went up in the lift.

The view from Nyks office was something else.  With the best view, i have seen of Sydney so far.

We meet up, go for an Australian beer & it’s like no time has passed. I ask him about his “new” life in Sydney. He told me before I got here that I would love it. I was a bit skeptical if I am truly honest (you know I love the U.S.A.) But Nyk was right again!  We talked about the people and the way of life that’s so different and makes it much better than at home. I asked about his work, and now he runs an event more important set-up. All about connecting collaborations, facilitating more visions and how to put these into actions. He says in London we were more intermediate in being able to help push change through, but here in Sydney at KPGM he is right at the top, deals with the top, so change is much more likely. It’s more rewarding to see where your impact is.

After an hour and a bit we have to split. The rain comes down hard but I’m in awe of Nyk and humbled by him taking the time out to catch up. A bit of home away from home,  but  here he is making it even bigger here in Sydney. So great to see Nyk (literally) making big heights.

And the stuff we talked about when it comes to being able to use drawing to help capture ideas, underpinning processes and difficulties in systems, and to develop new policies and processes really reflects back to my PHD work. And so I left feeling like that yes, I think I am on some sort of right track! That there’s a space for me and my work out there.

Thank you Nyk!

[goglobalsmizz]

Workflows: How user-experience design innovates radiotherapy

Today I met Stephen Towe who is the current Head of Product Development at Leo-Cancer Care. A start-up radiotherapy company based in Australia. His background is impressive: originally from the UK, he went straight from his physics degree into working for one of the biggest radiotherapy companies in the world: Elekta, where he over-saw development of the MRI-linac (which, as you know, now is very hot-topic). He worked there moving up and working on various projects when he was looking for his next challenge/change. Stephen’s been working and living in Sydney for just over a year now, and he generously met up with me today and we discussed what’s it like managing and working within a radiotherapy start-up.

Leo-Cancer Care’s office is based in the Australian Technology Park. It's an area that you can tell is having a lot of investment from the masses amount of construction happening. I’ve now popped along to various “technology/business” sites in Sydney - and feel like there’s so much going on. There’s a lot of design companies working out there within tech and healthcare. I found my way to the Leo Cancer Care office, and met some of Stephen’s team members - all representing different countries including more UK folks! It was great to meet some of the team.

When we went downstairs for a coffee ( a coke for me) I asked Stephen about the differences between working for a huge world-wide company and a start-up. He spoke about how at the big company, there’s like 500 staff all working on 1 project and that he would work on just 1 very specific small area of that project. Every day - all day, just focused on that 1 small thing that needs to be done. Where as in the start-up - he gets to do a bit of everything. Marketing, Sales, user-experience, prototyping and design, etc and states that it’s much easier to see where his impact is within a smaller company like Leo Cancer Care. 

Since Stephen has joined Leo Cancer Care, it has gone from 2 employees to a much bigger team (with at least 50 people involved sometimes). So is growing at an exponential rate. It’s really exciting stuff! The Director of Leo Cancer care is PROF THOMAS ROCKWELL MACKIE - world renowned within the radiotherapy world for his co-founded, innovative invention of TomoTherapy in 1997 and Geometrics Corporation which went onto develop the Pinnacle Radiotherapy Treatment Planning System (TPS) now owned by Philips Medical Corporation. So Stephen has seemed to have joined part of the radiotherapy game-changers. 

One of the many parts of stephen’s job is that he goes to multiple clinical centres and speaks to many different specialists (hospital administrators, radiation oncologists, radiation therapists, physicists, others) and he spoke in-depth about how many people/centres have myriad amount of ways to deal with the same outcome. Which is fascinating when you think about values and human behaviour, and what barriers each of those places have which are different from another place.  We talked about how we’re not very good within the field of radiotherapy with sharing our learning and things that work, especially across centres and even between different specialities - from RT to physicists to the marketers.  

And as we know, this is an area of interest to me, because i believe (and the literature suggests) it’s a modern medical scientific paradigm that has enabled this kind of culture.  From this I started to tell S about my my (phd) research, about communication and information, and my experiences training within radiotherapy. How radiotherapy isn’t fully “standardised” (as in - it’s all evidence based practice, but people apply it their own way for the same end result) across the treatment pathways because of the above reason. 

So it became inherently clear at the importance of good communication - not only in the treatment process and in the selling of products - but actually being able to understand each target user groups needs and issues - and then to be able to prototyping efficiently and with care that into a new innovative product.  

As designers we have a responsibility to anticipate and acknowledge the user’s emotional journey when using our products and services. Products that we use everyday in what often becomes a mindless habit have the potential to create subconscious reactions. We need to design with all use cases in mind in order to guide people in a healthy way through the emotional highs and lows they may experience. We need to use empathy, and testing, to do our best to imagine our audience’s reactions and observe it first hand where possible.

That’s where Stephen & his team are  right now with their key innovation, Ruby. I asked about what’s next, how they’ll get this product into clinical use. He says currently they’re in the talking to users part, and developing the prototype and its software. They’ll design,  make it, refine it, test it, refine it - this over and over again.  He talks a lot about workflows, and reiterates how It’s important to look at the Radiotherapy workflow - which on inspection seems simple. 

We have: Simulation >> Planning >> Dosimetry >> Checking the plan >> Loading the plan >> QA >> Delivering the Tx 

But each area is loaded with X amount of ways that it could be approached and it’s important that the user experience makes it so that this can be followed as closely, easily, with the least difficulties and good input as well as output. It sounds amazing. It’s like working out the possibility of something happening and making sure that this possibility doesn’t happen. 

Before I let S go, I ask him about what else they’re working on. He talks about EVE (An ergonomic, user friendly and fully automated system to accurately position and rotate a patient in an upright position.) Which is fascinating. As Proton therapy in the U.K. is pretty new (though not new everywhere) and it’s unlikely that I will ever work with a Proton Therapy workload, Proton isn’t extensively taught at undergrad level and most research papers are US or Netherland based. In preparation for our meeting today, I read up on patient positioning - especially within the Upright position (seated) - I hadn’t really come across this in my training, despite my wide clinical travelling and deep digging into research papers for novel techniques to get my higher marks in my viva and clinical examinations. So I was pretty stoked to find a hefty evidence base about it.

What working on a product such as EVE can achieve is it can make Proton therapy actually affordable. Radiotherapy within the UK has historically been underfunded, especially when you place the data against its important cancer tx workforce and cure rates that  it does achieve- and it is still kind of  underfunded. And it's for this reason why the investment into Proton has taken us so long. 

It’s a high cost investment, mostly due to infrastructure - you need massive rooms, tech/equipment, and a specialised built building, but it does have great treatment outcomes for its ability to deliver accurate high-dose proton therapy with that much talked about beautiful brag peak- which means you can deposit a lot of the energy into your desired area (tumour) with basically minimal exit dose. pencil beam allows great accuracy so the brag peak meeting an accurate delineation & delivery means much less toxicity to near by organs at risk. This is why it ’s especially important within the younger population to have proton beam therapy, so it reduces the persons chances of long-term complications post therapy and better quality of life.

The high costs of Proton, however, are mostly due to the beam delivery system. in assessing the cost-effectiveness of proton-radiotherapy is the choice between moving gantries and fixed gantries with robotic patient positioning systems. In fact there are two types of beam lines in treatment rooms: isocentric gantries and fixed (usually horizontal) beam lines. ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881119/) You can read more in this link. But essentially, using a system like EVE can revolutionize not only the affordability of Proton treatments but also enhance photon radiotherapy experience.  

I asked S about what about the issues of immobilization. and he talked about how the upright position is more reproducible than the supine/prone position because the distance between the hip-joints and the floor can be more easily controlled and with 3 comforted fixed main points (feet, shins, back) during each treatment session, there’s basically not much movement. Further reading showed me how there are many advantages to upright, especially in treatment sites such as Lung as it reduces movement without having to do invasive gaiting or breath-hold. Which, if you really think about it. is so significantly important and would change the experience of radiotherapy by just chilling in a seat.

I can’t thank Stephen enough for meeting up with me today and giving me a look into the design-engineering-physics side of pushing radiotherapy forwards. Giving me an insiders view on how we make tomorrows radiotherapy pathways and equipment today. All the challenges and advantages.

 I left feeling so inspired and motivated. He made me wish I was good at physics (which, unfortunately, is probably my weakest skill/knowledge as a radiotherapist). and he gave me some great directions in terms of where i could focus some of my skills and research - which is the area of looking at an under acknowledge group - marketers working with radiotherapists and physicists and how we can negotiation power and communication between these groups when it comes to developing and designing new stuff and pathways. 

What I really loved and took away from our meeting, is the (product/industrial/user/interaction) design processes in order to move forward and innovate the new products to enhance treatment outcomes and patient experience are pretty much (give or take) the same as the ways we work in Art & Design.  What this tells me is, this kind of thinking and ways of working does need to be enhanced within the UK healthcare system. 

Thank you so much Stephen. 

[goglobalsmizz]

Bondi Beach. Watched surf, sunset, and the water was hotter than the sand!? 

[goglobalsmizz]

Optimism & Sustainable Development through the medium of Bryony & Anthony

Yesterday, I met 2 amazing people. Bryony Simcox and her housemate Anthony. 

Bryony is an urban-planner/architect/artist. She’s been living in Sydney for about 2 years now, but originally from the UK. We had never met before but her mom (who I always have a good chat with at exhibition openings in Sheffield) hooked us up via Twitter. Bryony picked me up from the Newtown station and we walked to her house where she prepared a gorgeous meal of fresh organic tomato & pepper sauce and spaghetti and cups of British tea. 

Bryony was just as amazing as her mom, kind and amazingly smart, a great artist with an endless vision for how to make the world a better place. We couldn’t stop talking. Each both fascinated with the others work, putting the world to rights and of course Bryony giving me all the Sydney tips. We were mid-conversation when her housemate, Anthony, came in. Anthony has been living in Sydney for just over a year. He’s an engineer by training with 10 years working in that field, but he wanted a change in career and adventure, so came to Sydney to work and do a masters here.   And we had such a great time getting to know each other.

It was amazing to sit and talk infrastructures, social change, and living systems with an engineer, architect/urbanist and whatever I get classed as. 

In our discussions, I learned about how Sydney’s culture functions, from the bureaucracy of being able to put events on & the masses of paperwork/red-tape, to the linguistics here. Her architect knowledge shone through as we talked about how the city is laid out for commerce and it’s new - yet at times troubled - heritage.  We both shared our annoyance at how long it takes for the traffic lights to change here in Sydney (honestly it’s really long!). 

When we started talking about living, and affordable housing, and the future of how we will occupy space in the city.  This is where Bryony comes into her own, her passion for sustainable development is second to none- we keep coming back to these questions of how do we bring local and global together, properly, compassionately and rigorously without losing what makes it special?

Through our discussions, certain things came up that made me think a lot about my research/practice/what’s important to me in this world. 

Specifically, these questions have become heightened, i think it’s important to look at throughout my reflections and studies: 

How do we create, and save/maintain, community ? 

What does it mean to be a private body in a public space? 

When does public space become private, and vice-verses?

Why are spaces of care designed like they are? 

How does it change (& why) when you move from state to something like Maggies centre.

How do we make information accessible? 

How do we then make it empathetic?  As healthcare professionals, and artists and designers, etc  it is our responsibility to anticipate and acknowledge the user’s emotional journey when using our products and services. Yet in healthcare, our patient information usually doesn’t come close to seeing this. It’s often a very rigid, station one vague stop at the beginning of a process. And as we know from countless research papers (& any experience we have), a patient's informational needs change throughout their treatment process (obviously?). This is evidenced a lot within the breast cancer pathway. So it makes no sense why we would create information in the way that is currently deemed as acceptable. 

Building upon this is the main BIG question of:  how do we bring in humanism into what we do?   A big part of what I am currently trying to grapple with in my PHD work, through practice, is the (visual) values that are current instilled into healthcare system. And what they communicate.  It’s very complex. But essentially it’s about really getting to grips to what is experience/environment/and real. It doesn’t need to be super clinical to instill trust and professionalism. In fact, I’d argue that actually the ideas of clinical & professional need to be updated. That’s one thing I have learned from my time in Canada (where radiographers didn’t have to wear uniforms) and here in Sydney where there’s a more relaxed vibe. It’s not about hierarchy in the way old-school UK does it. And i think there’s a lot to learn and observe from this going forwards when thinking about our practices generally. 

[goglobalsmizz]

Dinner parties & making new friends

On Saturday,  Jane - the person who has helped me organize most of my trip - put on a dinner party & invited me along.  Her husband and herself cooked us the most delicious meal (& baked a cake too!), and around the table she chose some of her close friends who all work in healthcare & design for me to meet too. 

I hadn’t met Jane in real life until the other day when she picked me up at the airport. We had skyped twice since December 2017, and sent a few dozen emails.  As stated in an earlier post, Jane saw my paper at the Design4Health conference and told Claire (my PHD supervisor) she wanted to get in touch. Claire hooked us up via email, and the rest is history. 

But I am taken-aback this generosity. Jane’s husband Rob has been living in Oz for 30 (?)  years now, but he’s originally from near Leeds, YORKSHIRE! He still has a Yorkshire accent. Their house is incredibly beautiful, on a street that wouldn’t look out of place in a movie.  They have a Sydney skyline view from across the river. 

And I was welcomed into their lives, like I too was an old friend. A gathering just for me. They called it Christmas in July (and xmas is my favourite time of the year!) Jane and I are meeting up in the week to prepare for meeting the radiation oncology team  on Friday. But I thought today was extremely thoughtful and kind. 

Afterwards, Jane & Rob walked me through the neighbourhood and we watched the sunset, and they showed me where they got married 9 years ago. And they put me on the right ferry back to the city centre. 

  Why do I tell you all of this? I think it just reminds me, another example of many that I have, that people are inherently good and kind. And if you leave yourself open to opportunities, and take the odd risk here and there, then some amazing things can happen.

[goglobalsmizz]

Learning from adding “Transdisciplinary Innovation” education to healthcare

It’s been a good few years where I’ve been in this lucky position to go to a whole new place, a new country at that, and discover it through its people, their work and its spaces (in this capacity). The last time I felt like I did this, was either when I interned at Postmasters Gallery, NYC, in 2008, or when I did my masters dissertation research looking at the role of socially engaged art in Chicago in the winter of 2009. 

Both of those times I was placed in recognizable yet completely unfamiliar territories (location et al). I knew no one, and I still needed a paper-map to get around the city. My days had a few bits of structure, but most were wide-open. I lived with strangers both times, and had to work my way into already existing teams. 

And this time in Sydney feels a lot like this. Which excites me. It’s been a long time since I’ve felt the pang of adventure and uncertainty like this. After I got sick, the world became a very different place to me. The things that I felt mattered back then, became not that important, and everything I thought was just filler- actually held some of the most importance.

Before, I can’t ever really remember watching the sky like I do now. I can’t ever remember really taking the time to pay attention to everything around me like I now do – I’ve never ran out of an art gallery and up a harbour in order to catch a sunset – like I did yesterday, that’s for sure. It feels like I am now hyper-sensitive about everything. The way the light hits buildings, and how the sunset creates these insane colours, how the stars in the skies are like looking into the past, how the seasons all smell differently. I never want another moment to pass me by. 

So being here in Sydney has been unreal on my senses. Every time I leave the hostel, I am transported to a different part of my life. Haymarket is like city-central Chicago/Toronto esq. The air, even though still much warmer than our winters, SMELLS like winter. And the light is that blindingly bright, blue-y light you get in the winter months too. It feels so weird!

Every day after meetings, or in search of events, I head out and try and discover a new area. Yesterday I did Haymarket and the harbour. I visited the Museum of Contemporary Art and drew lots of buildings. I saw my first Sydney sunset and the colours were so bright. Today I got to speak to people (researchers) at the University of Technology Sydney (UTS – Australia’s no. 1 young university, ha) all about my research and practice. And it was incredible. 

The place is basically Australia’s MIT, and it was inspiring just being around campus. Most classrooms are made of glass so as you wander around the buildings, you see people working in studios or in lectures. The signage for 24/7 access to labs, and the way everything is laid out – is a bit movie-like. At one point after I finish my talk, and explore the campus, I ended up accidently entering a class on ocular pathology! 

What is kinda cool about this university, is that everyone has the option to take “Transdisciplinary Innovation” So you can graduate with your BSc Hons in Nursing with Transdisciplinary Innovation, nicknamed “Creative Intelligence & innovation”. Now, that’s my kind of education. Where healthcare professionals, and people in the business school, or law, or biomechanical physics, all get to do creative stuff. 

Because friends, an arts education is really truly invaluable to all fields. For the freedom, it’s ability to turn transactional things into transformational ones. It can help solve problems, be a tool to help deal with burn-out (people feel engaged and useful/challenged in a good way), create opportunities to enhance empathy, help with communication issues, and so much more beyond.

I think to the campaign that is ongoing in the UK, to help recruit people to study radiotherapy, as there’s been a decline in applications (honestly, we knew it would happen with the stopping of tuition fees). But you know what can help try and entice people to work in the NHS, as radiographers, or whatever HCP? – is being allowed some creative autonomy. Any NHS policy wants HCP’s to be “change-makers”, yet its value system doesn’t yet seem to quite aligned with how it treats or allows opportunities for peoples small-scale changes. 

My PHD has been trying to grapple with these kind of cultural issues, embedded into how we present information and the barriers we put in place that stop true creative, collaborative and personal responsive solutions/suggestions /processes within healthcare. And seeing peoples work today, really brought home that if we’re super serious about recruiting the next healthcare workforce in the UK – that we need to take a lesson out of the creative-arts book. And we need to be more creative & personable with our recruitment vision too. 

Anyways, people seemed super supportive of my research today, and I’ve even got a few more connections – and lunch dates coming up. 

Afterwards, I wandered around the campus and the went to check out the area Chippendale. Once an old industrial spot, it’s a place of urban reinvention, features a sustainably designed, mixed-use urban village, one of the world's best galleries of contemporary Chinese art, an edgy boutique hotel, a cheap Singapore-style hawkers market, plus lots of tucked-away funky spaces to discover. I checked out a bunch of art galleries, like the White Rabbit artspace, and I am still on the hunt to finding my favourite part of town.

[goglobalsmizz]

Why Australia & the Plan?

In December 2017, my supervisor Dr Claire Craig delivered my research Paper on: “Using Drawing As A Research Method To Look At The Experience Of Radiotherapy & Epistemic Injustice” at the International Design 4 Health Conference in Melbourne, Australia. Claire had to deliver the paper for me as I couldn’t afford the trip alone, even using my PHD scholarship grant, to pay for all the costs such as the conference (£650), flights (£700) and accommodation (£300+), plus living expenses. However, what I didn’t expect was the great response to my paper. Claire had asked the audience to write down questions & comments for me to answer at home, but then someone recommended that they should record my feedback. It was absolutely incredible and humbling to see on video, how my research had touched people, saw its importance and made multiple offers for me to come over and visit/collaborate with them. This then generated various connections which we have maintained over Skype over the past 2 months. Until recently, I had no idea of the openness of radiotherapy research in Australia, especially with using art & design methods to enhance service provision. To enhance patient experience and autonomy within cancer care is something I am incredibly passionate about. This passion is more than just research for me, but it is my life’s work now – to make cancer care better for everyone. After falling sick myself, I saw the gaps in the healthcare pathways and systems. And when I re-trained in radiotherapy & oncology, I saw the gaps in a different way for my patients and staff. But each time I knew that using my art & design background could enhance meaningful change to look at, and tackle these gaps. So, I used my artistic practice to try and meaningfully design and make things to help with looking at the radiotherapy pathway, its experiences and knowledges, and radiotherapy’s profile (and my PHD is a continuation of critically looking at this). This is evidenced by the multiple awards I have won for my work and research such as mHabitat (Best student digital driven tool) for the 1st ever radiotherapy patient information app, and Society of Radiographers UK National award for Radiotherapist of The Year (2016). One person who was  touched & intrigued in Melbourne from my research paper due to her own personal experiences of radiotherapy treatment, was a designer called Jane Cockburn who runs Kairos Now  - a healthcare design agency dedicated to making person-centered design research methods to enhance real coproduction with patients in healthcare. We have spoken in depth over the work she does, and she has kindly offered the opportunity for me to meet and work with her and their network, within the local radiotherapy centre and with her radiation oncology team in Sydney. 

We believe that there’s a unique position to being both patient, researcher, artist/designer and healthcare professional that can bring something really incredible to our research to enhance care and our networks. 

And this is why I am applied for the GoGlobal Fund at SHU. To be able to go over to Australia to meet, network and potentially collaborate with Jane and her networks is an invaluable opportunity for many reasons: Firstly, I hope to learn from Australia’s openness to research to design & health, and collaboration. I would like to then be able to apply everything good that I will learn from there to my research, and bring it to my practice as a healthcare professional, and as an artist & researcher, within the NHS & beyond in the future.

[goglobalsmizz]