Designing Healthcare through Art & Design.

Medicine develops so fast, especially radiotherapy. But one of the areas we’ve not caught up with and developed  is the design of healthcare. I know what you’re thinking. What’s art & design got to do with anything in healthcare, really? And if you’re thinking this – this basically uncovers one of the reasons why design is an issue – because no one is thinking about it.

Last year I made the first Radiotherapy Patient Information Smartphone app. RADcare. Just me. I drew it out on paper – big sheets of A3, pages and pages – in the library and in Starbucks, I read paper after paper on patient informational needs, scoped out what is already out there, thought about the pathway and critically reflected my time as a patient and doing first-day chats on clinical placement. After being a patient (not a radiotherapy one) I’ve always felt that patient information – from the letters that you get from hospitals with appointments on, to medical procedures  to be flat, lacking in information that you actually need (Like where do you check in? ) and just depersonalised. If you actually get anything at all. Visually, they’re not very good either. It’s no wonder most people don’t read the material we give them. It looks about as enticing as getting a filling done at the dentist.

Then there’s the issues of – how one leaflet can’t really fit all. It can’t offer all the information you might want to know, it may also be in a format that isn’t accessible for people – like literacy is an issue.

And yet the government wants us to be more proactive with our self care – using the internet to try and gauge what we have is important enough to visit our doctors. But here in lies another patient information problem. We don’t know how reliable websites are for healthcare data and information. So when a patient, or a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.

So I designed this prototype smartphone app.  I wanted it to be everything current patient information is not. Accessible. Even a bit cute. Detailed – but you have a choice on how much detail you want to access. And colourful. A mixture of formats – from animations, videos and text. And most of all – more personable with a bit of heart. I wanted to break all the corporate rules.

Whilst it’s so important to do your user-research first, and make the UX design user-friendly first before design aesthetics – I prepared it with research and aesthetics first. I knew that the coding stuff (I need someone to make it work better than my amateur coding can do) can be fixed later.

As Bon Ku discussed in his interview on the importance of health care design, he states that “most of us don’t realize that everything in health care is design.Someone designed the pills that we swallow, those gowns that we wear in examination rooms. But I think most of it’s designed poorly; we too often will design mediocrity in health care.

And Ku hits the nail on the head perfectly. I’m passionate about using art processes in innovating healthcare and it’s design away from mediocre.  I jumped ship from art to healthcare to use my passion of trying to eradicate social-injustices and inequalities to try and make the patient pathway better. I know, from my work with NHS England and other healthcare organizations, that creative methods – from drawing patient’s experiences, and filming their life – are great and affective ways to make the patient feel heard and valued – and as a result – you produce something with much more worth and use. Because it was built with the experience of the people using that service/prototype/leaflet.

I think part of the worry with using more creative ways of designing healthcare comes from healthcare’s obsession with measuring outcomes. In a scientific way, too. This culture needs to be adapted – not just for innovation but also for our practitioners whose continuity of care doesn’t get acknowledged. That extra 10 minutes spent with a patient – with no boxes to tick to get measured – but it made a massive difference for the practice and the patient.

But how do you evaluate the use of creative ways effectively? How do you measure them? Is small-scale testing enough? It’s a mine-field.

So I hope you’ll help me. I wanted to try and use my app as part of my dissertation — just so my spare-time project gets some academic acknowledgement. I’m doing a design evaluation of the app – and I’ll be putting key-parts of the design online with some questions and one-on-one interviews. If you want to help me evaluate the design — i would be extremely grateful.

If you want to help me – I would love to hear from you! – holla at me on Twitter, or by email smizz@sarahsmizz.com

If you have any cool articles about heathcare & designing/art – i’d love to know about them too.

And if you’re passionate about making a difference, or about art& design and health care too – Let’s share an email or grab a coffee.

Here’s a taster of the app (My favourite but is skin-care guide) 😉

 

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What does a radiotherapist do and how it’s given me life advice for the future #worldradiographyday

I often get asked, “You *just* take x-rays, right?” When people ask what I do and I say, “Radiotherapy”. (I do – in fact – take some ‘x-rays’ but that’s not my main-specific role).

Sometimes they know a lil’ bit more and ask, “Soooo, you *just* set up the machines?” (The machines are these 1 million pound things called linear accelerators). Like that’s all we do, “set-them up”.

But I love telling people what radiotherapists do and i love it when people want to know more. We’re the somewhat misunderstood colleagues of the radiography world. We’re not radiologists – we don’t interpret your scans and diagnose from there, we’re not diagnostic radiographers you see for an X-Ray when you fall down the stairs.

We’re the people you seem to only learn about after you’ve seen our other radiography colleagues and if you have cancer (or some limited benign conditions) in yours or a loved ones life. Some people luckily have no cancer narrative in their past and come across our profession from twitter/internet, others from university prospectus books, their love of physics and imaging. Occassionally if people are on it, we get some national coverage.

Radiotherapy is a cancer treatment that about 40-50% of people diagnosed with cancer will have as part of their treatment. It can be used to reduce symptoms, and most importantly: pain. It’s often a curative, cost effective, and often non-invasive treatment.  And how we do that is by generating a plan of treatment.  That plan aims to deliver a high dose of radiation  over a series of fractions (days) (generated usually by high-energy xrays [photons]) targeted at the tumour extremely precisely, and any microscopic disease (GTV*, CTV* & PTV*) and any lymph involvement as specified by the doctor.

We don’t just “press a button” or “set up the machines”. We have 3 years training specifically within oncology to begin with. We learn all about cancer, radiobiology, cells, immunotherapies, chemotherapies, surgeries, staging systems, global health, prevention, end of life care, person-centered-care, psycho-social issues, financial implications, ect. We learn  all about radiological physics and imaging and some basics on imaging engineering. We constantly keep up to date with world-class research. Then we spend months & months on clinical placement, for 3 years, including all summer, critically reflecting, learning to effectively collaboratively work together, learning how to deal with life and potential problems and techniques and protocols specific for your center, specific for each person and their cancer. Basically, we’re properly specialized in clinical radiation oncology.

Pre-treatment

We work in ‘pre-treatment’. Here is often the first point of contact that the patient has with a radiotherapy department after being diagnosed and a course of radiotherapy is prescribed. We try to put the patient at ease, give them a first day chat letting them know what we will be doing and any questions they may have, let them get to know us for a bit, and we visually and through asking questions assess how the patient is and any needs they may have. Sometimes they have to have specialist immobalization made such as masks, and radiographers do this too.

We figure out the best position for their treatment, and make sure its as comfortable as it can be to withstand weeks of that position, whilst ensuring its reproducible and stable. We generate all the ‘set-up’ information for their treatment: their position, making sure they’re straight, not rotated, that our set-up position is in a stable location, where we decide to put some ‘tattoos’. Always assessing, always analysing. Then we do a planning CT scan – much like diagnostic radiographers would with the patient in this position. It always has to be a CT (though we often fusion images together such as PET & MRI) as CT gives us tissue density to plan each beam/field effectively.

Planning

From here after the image has been contoured (Organs at Risk [OAR] & tumour being outlined) by the doctor (some places the radiographers do it too) radiotherapists plan where each field goes. They have to get rid of any hot spots, make sure all the tumour and surrounding margins have a 95-105% dose homogenous dose coverage whilst avoiding near by healthy tissue. It’s not the easiest task and each persons body is completely different. How exciting right?

Checking & revisiting

From here that plan goes to physics to be checked, then back to the doctor. Some of these plans will be discussed in Multi Disciplinary Team meetings with doctors, radiation oncologists and radiologists, physics and radiotherapists. Once satisfied, the plan and set-up sheets, and prescription gets another double check – by 2-3 radiographers. This – from start (CT planning scan) to fully planned and checked is about a 2 week process.

On Set / treatment

Then it’s time for the patients first official day on treatment. We check everything, look at the wedges, the monitor units, think about where the patient will be on the bed and the angles of the beams. Many more verification techniques happen here. We get the patient on the bed, after giving them another first day chat and looking after their skin and side-effect advice, guide them into that same position, make sure they’re straight and not rotated. Use those tatoos and set-up sheets to guide us. We check SSDs, positions, angles, we take images to verify and image match. This is that bit where we ” *just* set-up the machine”. Once we’re happy with everything and again double checked everything from patient ID, and RR numbers to monitor units and angles and beams and fields and position and much more. We press that button and deliver that life-saving treatment.

But what’s just as important as checking our images, checking everything else is correct and safe. Is that our patient is OK !!

Treatment day is another huge milestone for our patients and their loved ones. Often, because radiotherapy is so under advertised and unknown about, or the media portrays it wrong and factually incorrect – our patients can be really nervous/anxious. What is this Linear Accelerator? What exactly DO WE DO?! Will it hurt? Does it burn my skin?

This is where the radiotherapists great person-cenetered skills come into play. It’s my favourite part of the job. It really makes my day when you’re able to establish a rapport/trust with one of your patients and make them feel better/more at ease. Often it’s just letting them tell you their story. It’s often been a difficult path to where they are today. Months and months of being undiagnosed with symptoms that took ages to pin-point. A bad chemotherapy reaction, trying to juggle work and picking up their kids, the 2 hour drive to the hospital from their house, ect. It takes time and empathy to be able to get this person to trust you and your team. You get to share your knowledge to put their worries at ease. And this is the best part of the job for me.

Unlike most of our other radiography colleagues, we get to see our patients every single day for their treatment. This could be every work day for 7 weeks! That’s quite a long time. It’s exactly the reason why I specifically chose radiotherapy. I wanted a healthcare profession where I could get to know my patients. A lil’ bit like a GP has the potential to do so.  How that continuity of care enables you to easily see any change in the person who might not let you know something is wrong. How each day you peal another layer over, you slowly find out who they live with, do they have any pets, their intricate details of their lives, honeymoons, holidays, work. I’ve treated gold-medal winners, people who run magazines, who owned planes, who volunteer their whole spare time for the most vulnerable. You hear some stories that will stay with you for the rest of your life and there’s people who you’ll think about months later. There’s some stories that you feel in the pit of your stomach, and there’s moments of pure joy that nothing will compare to. You’ll learn these details and it helps you make some assessments. Is this person frail and has no one at home to look after them? Can we get them some clean clothes? Can we refer them – ask if they want to see someone for specific type of support (complimentary therapies/financial advice ect). You can figure out if they’re following your side-effect advice or not. There’s a lot of potential for radiographers here to make a huge difference to someone, and i love that responsibility.

Service Improvement & research

And then there’s another cool thing radiographers do. We can use our practice to implement service improvement changes or undertake & create world-class-life-saving research. I see the future of radiotherapists moving more into preventative, on-going-care and recovery/post-treatment care.  I’m so passionate about us helping to support our patients and their loved ones. The health-gap is going to be one that continues to grow under our ever growing unfair and unequal society. And cancer – the diagnosis and the survival-rates of it – is a product of the gap. I believe we will see more radiographers moving into this discourse and helping our patients live a better life – during and after treatments. Survivorship can be so rocky, so it’s a given that with all our specialist knowledge that we should enable to help commission, produce and create services that can support our patients.

Being a radiotherapy student isn’t easy. It’s very full time, there’s a lot of different skills to master, juggle many types of work from clinical knowledge to academic stuff; you have to become a commealian – you adapt yourself to which ever team personality you’re working with. You need to master time management (I’ve not fiigured this out yet). I found I take longer to do the more technical stuff – I believe this is because as an artist I’m not used to thinking so routinely and logically. I’m having to retrain my brain – but I love the challenge. And after those great weeks you have on clinical placement, when a patient is so thankful, when you put someone at ease – made them laugh. It all some how feels worth it. You go home with a warm fuzzy feeling. It’s kind of indescribable. By the end, because of the continuity of care – it’s like you’re treating old friends.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  i’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And as I read somewhere: see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

HAPPY WORLD RADIOGRAPHY DAY.