Research ppj

erlendp97

Future

Experiences

a two-part project

surrounding precision

medicine and the

future of cancer care

Erlend Prendergast

1



Introduction 1, 2

Methodology and research partners 3, 4

What is precision medicine? 5, 6

Cancer - present and future 7, 8

Technology, defining our lens 9, 10

STEEPLE insights 11

Could you be an athlete? 12

Job towards cheaper healthcare 13

From the hospital to the home 14

Tools for passive montioring 15

AI becomes expert 16

Futures workshop 17, 18

Future world scenarios 19

Health points here! 20

Government of google 21

Offline countries 22

Weaponised genomics 23

Health cast 24

Reframing our scenario 25, 26

Prototyping workshop 27, 28

Future exhibit research 29, 30

Designing the exhinit 31, 32

The exhibit 33, 34

WIP show 35, 36

Part II: Individual work 37, 38

Potential directions 39, 40

Identifying users and their needs 41, 42

Making a short film 43, 44

Expert sessions 44, 45

Data collection in clinical trials 46, 47

matching patients to trials - barriers 48, 49

Crating future context 50, 51

Where might AI intervene? 52, 53

Inital concept - monitoring toools 54, 55

Initial development 56, 57

Trial matching service 58. 59

Communication props 60, 61

Mid year review feedback 62, 63

Material exploration 64, 65

biometric service 66, 67

Gathering environment data 68, 69

Datafloot 70, 71, 72, 73

Indicators 74, 75, 74, 76

Lifestyle data 77, 78,

Final concept/ manifesto 79, 80,

Refining final model 81, 82

Storyboard 83, 84

Final Proposition 85, 86

Part II evaluation 89, 90


how might

our health-

futures

Philips’ ‘Hospital of the Future’

look?

This 8 week project was a response

to the theme ‘Personalised Health in a

Consumer Age’. With a particular focus

on precision medicine and the

future of cancer care, the brief was

to design human experiences set ten

years from now which “reflect on the

underlying complexities regarding the

future of health, technological acceleration,

post-capitalism and human agency”.

There were two distinct parts to the

project: a 3 week group-work stage

and a 5 week individual stage. The outcome

of part one was to envision a

future world context and develop it as

an experiential exhibit. The individual

element of the project focused on a

specific element of the exhibit in order

to develop it into a product or service

which communicates a human experience.

1


Extracts from the project brief:

“Considering the notion that PM holds

the key to the health of future generations,

and patients facing cancer will not

only have more control over their own

treatment pathway but also become

active contributors to that of others,

how might this evolve the nature of

medical practice and the role it plays in

our own future health?”

The VR software SpectoVive

allows doctors to interact in a

three-dimensional space with a

part of the body that requires surgery

“The objective in this project was to

investigate, in both analytical and speculative

ways, future forms and functions

of cancer treatment and care in relation

to precision medicine, to develop a

future scenario and design the artefact,

service and the experience(s) associated

with it. “

Algorithmically-determined genetic risk profiling’

- from Superflux’s project ‘‘Dynamic Genetics vs.

Mann’

2


Throughout the project we worked with

an expert panel of 20 medical academics

and healthcare professionals with expertise

ranging from Consultant Pathologists

at the NHS, to Clinical Scientists, a Head

of Laboratory Genetics, to the Executive

Director of the International Genome

Consortium and patient representatives.

In the first week we were able to visit

the The Clinical Innovation Zone, located

within the new Queen Elizabeth University

Hospital campus (the largest acute

medical facility in Western Europe). The

Clinical Innovation Zone is the home to

a number of companies across the broad

spectrum of precision medicine, imaging

and diagnostics who wish to collaborate

with academic and NHS researchers.

This experience gave me valuable insight

into the work being carried out in

precision medicine in the UK and across

the world. The Clinical Innovation Zone

is an attractive place for startups and

small health tech businesses to situate,

as it gives them access to a valuable

network of data and resources, including

patient data which is integral for research.

Seeing and hearing about the type of

work being carried out here and elsewhere

was fascinating - if not a little

overwhelming. It allowed me to situate

and contextualise this project within the

landscape of precision medicine and

cancer care, which was really beneficial

at this stage of the project.

These areas are advancing rapidly, but

there is still a lack of understanding

about the social impact this will have

on patients and society in the future.

I came away from this visit excited to

do more research on the topic, especially

to understand what the social implications

of these advancements might

be.

3


Diagram: The Clinical Innovation zone

is an example of a Triple Helix model,

bringing together a pan-Scotland collaboration

of various partners from across

academia, the NHS and industry.

4


genetics

One of the first tasks in this project was

to form a pretty detailed understanding

of precison medicine. This was definitely

quite intimidating at the start as I had

very little prior knowledge in this area -

but after diving into research and sharing

our knowledge between us, I soon felt

comfortable with the topic.

So... What is PM?

Precision medicine (PM) is an emerging

approach to disease treatment which

uses the patient’s individual genes, lifestyle

and environment information to

tailor their treatment and prevention

strategies more accurately. This approach

is part of a greater shift within

healthcare towards patient-centred

care, frequently referred to as ‘personalised

healthcare’.

This is especially relevant in contrast to

the current outdated one-size-fits-all

approach, in which disease treatment

and prevention strategies are developed

for the average person, and people are

often put into boxes. Precision medicine

is about taking greater consideration for

the differences between individuals, and

using these differences to optimise the

delivery of healthcare.

5


Rather than focusing on

changes in single genes,

scientists are learning how

to identify patterns in the

genome sequences of patients

with the same condition. Particular

patterns can be linked together to

develop a more coherent picture of

how diseases affect individuals differently,

or even predict whether people

are likely to become ill and, if so, what

the most effective treatment is for their

condition.

Precision medicine isn’t just about genetics.

More and more, experts also

need information about individual and

family healthy history, lifestyle factors

(like diet and exercise habits), and environment

-- things you were exposed

to where you grew up and where you

live now (like the air, water, and quality

of the area).

Close up of a microscopic slide

with genetic data

he role of lifestyle data in precison

medicine played an important

role in my project later on

6


My understanding of cancer was probably

a lot narrower than I realised at the

beginning of the project. I didn’t understand

just how much it varied between

individuals - and how much of this was

influenced by genetics.

Some of the key points that I learned during

research:

With an increasingly ageing population,

the number of cancer cases will continue

to rise as more people live longer - but

people will be more likely to survive cancer

in the future. According to Cancer Research

UK, 50 years ago only a quarter of

people survived the disease, today, thanks

to scientific research, more than half of

people will survive for at least 10 years.

Medical advances will mean cancer patients

of the future will be more likely to

receive treatment which allows them to

live long, healthy lives. With this in mind,

rather than thinking about cancer as curable

disease, mindsets have shifted towards

thinking about cancer as a chronic illness

which people learn to live with.

For centuries, clinicians categorised the

disease based on the location, for example

‘breast cancer’, with oncologists specialising

in treating the cancer of one particular

organ or location within the body.

In contrast to the long history of the disease,

the classification and treatment of

cancer at a genetic or molecular level,

rather than by organ, is a relatively new

strategy.

Many of these cancers are preventable

through lifestyle changes, such as quitting

tobacco, improving weight and diet, or

reducing alcohol consumption, but many

are also the result of predispositions to

certain diseases inherited along ethnic, racial,

or familial lines.

7


2010

2 million

2020

3 million

2030

4 million

8


The class was split into eight research

groups for the first stage of the project,

each of which explored the topic

through one of its social, technological,

economic, ethical, educational, legal and

ecological (STEEPLE) dimensions. Our

group’s STEEPLE dimension was technology,

meaning that our first step in

research was to define the relationship

between technology, precision medicine

and cancer care.

We subdivided technology into five different

subgroups; pharmaceutical, educational,

clinical, scientific and consumer.

Each of us within our group went away

and carried out in depth research into

one of these subgroups, generating 10

detailed insights.

I chose to look specifically at consumer-health-tech

products, both currently

existing and in development. As healthtech

products such as tracking and mentoring

devices have become common in

recent years, they will likely impact the

way we understand our and navigate our

health in the future.

Looking back on it, this initial stage of

research into consumer health-tech

was valuable for me, as it informed the

way I approached the rest of the project

- in both the group and individual

stages.

9

Charlotte and our intial mind map

exploring ‘precision medicine, cancer

and technology’


NXT Health - Patient Room 2020

At this stage we were interested in understanding

the specific technological

products, systems, networks and infrastructures

that exist/might exist currently

and in the future. By pulling all of

our research together, we were able

to create a coherent picture of the role

technology has within precision medicine

and healthcare more broadly.

We decided early on that rather than

just focussing on specific technologies

and products, we would think also think

about the societal and behaviour impacts

of technology. For example, after

researching the consumer health-tech I

was interested not only in how wearables

(Fitbit, Apple Watch etc) function,

but how they altered their users’ behaviour

and health awareness.

10


Aleksandra and a few of our insight cards

Using the format of a STEEPLE insight

card, our group created 40 insights surrounding

technology and healthcare.

These were wide ranging, covering

not only a huge number of emerging

technologies, but our thoughts into the

social and ethical impacts these technologies

might have in the future.

Each group within the class took turns

to present their insight cards to the class

and tutors. As we had all focussed specific

STEEPLE dimensions, there were hundreds

of varied insights which came together

to form collective group research

which was expansive and thorough.

Reviewing all off the class’s cards was long

and a little tiring, but by the end of it I

had gained a lot of knowledge that was

integral to the project.

On the following pages I have highlighted

a few of the insight cards created at this

stage, that I referenced throughout the

project.

11


23 and Me’s DIY genetic testing kit

It is now estimated that 1 in 25 people

in America have access to their

own genetic data. This is the result of

direct-to-consumer genetic testing

companies such as 23andMe which

allow consumers to use and return a

simple saliva test in order to access a

whole range of data online. This inofrmation

promises to unlock the mystery

of your genomes, variously explaining

everything from ancestry, residual Neanderthal

variants, “bioinformatics” for

fitness, weight loss and skincare

12


The last few years have seen a rapid

growth in development of wearable

technology products, which use sensors

to gather and measure users’

health data. Through the use of devices

such as Apple Watch and FitBit, users

can now receive discounted health and

life insurance if they prove they lead

healthy lifestyles.

This is an example of behavioural nudging,

which will become ever more present

as we hand over more and more

data to private companies. If corporationshave

access to not only our lifestyle

data but our health data too; how

might it be used to influence the choices

we make?

The Apple Watch’s health monitoring

capabilities becomes more advanced

each time a new version is released

13


Smart technological products allow

us to track our health data and lead

healthier lifestyles, giving us a quantititave

understanding of our bodies. This

affects the way that we think about

healthcare, as we are now equipped

with many of the tools we need to become

informed patients

The way healthcare is delivered in the

UK is paternalistic, and thus patients are

not usually very informed about their

own health. This stems partly from

the fact that medical language, hospitals,

and doctors are all detached from

everyday life. If people want to take

an active role in they healthcare, they

need to learn a new vocabulary.

The emergence of consumer techn

ogies might, in the future, bridge this

language gap, allowing people to gain

insight into their health without going

through a doctor. This might prompt

people to take greater responsibility for

their own healthcare,

14


‘Smart’ glucose monitoring contact

lenses

Once a patient has left

hospital, how can doctors

track their physical

condition? Conventional

technology is too bulky or

obtrusive. This tattoo-like

patch embeds sensors

and other electronic components

into a flexible film that’s half

the thickness of a human hair, can be

applied like a temporary tattoo, and is

worn with comfort. Continuously monitor

health & wellness, cognitive state,

brain activity, or sleep patterns.

how will AI change the doctor’s role?

15


Artificial Intelligence (AI) is alreadybeing

trained by Alphabet, Google’s

parent company, to detect skin cancer

using smartphones capable of the same

degree of accuracy as the best human

experts, taking the expertise of doctors

and placing it in the hands of the public

and their digital devices. As patients

stream data from their smartphones

and wearable devices, they are teaching

AIs to do ever more. Future AIs could,

for instance, provide automated medical

diagnosis from a description of your

symptoms, or spot behavioural traits

that suggest you are susceptible to developing

a disease later in life.

16


utopia

Using the insights we had generated in

our groups, we had a workshop led by

design consultancy Studio AndThen, to

explore how the landscapes of cancer

and precision medicine might evolve

over the next ten years. This workshop

was brillaint and was really integral to

our creative process.

After a very intense period of research,

our heads were completely

saturated with new information. By

illustrating the consequences and being

quite loose and imaginative, we

freed up our minds and started up a

lot of new conversations and ideas as

a group.

17


Our developed future scenarios pinned up on the wall, alongside the post-it

note sketches that led to their creation.

We did this by exploring and illustrating

the future consequences of

our insights, in three stages. In context

to our technological lens, the

first stage (first order consequences)

considered the direct impact

that emerging technologies might

have on society. These consequences

then diverged out to consider the

broader social and ethical implications

of technological change.

After each picking a selected few

of our consequences, our next task

was to create a series of ‘scenario’

posters which highlighted

the future societal shifts which

we thought could take place. We

talked through these scenarios and

wrote them out collaboratively,

before each making a poster. The

final task was to create a range of

fictional, future headlines using existing

newspapers, thinking about

how the consequences we highlighted

might filter down to peoples

daily lives.

18


During the future consequences workshop,

we were tasked with creating a

series of future scenarios relating to our

lens and the insights we had. These scenarios

were essentially visions of how

the future might play out, each of which

were based on a collection of different

insights. By using insights which we had

generated collectively a a group, these

future scenarios made sense to all of us

and facilitated lots of group conversations.

The scenarios we created related to one

and other and could exist within the

same future world. Our only issue at this

stage was that our insights had led us to

discuss lots of dystopian ideas, and we

had neglected many of the positive implications

of that technological advances

might have in the future.

19


Health monitoring leads to the

monetisation of cancer treatments.

By living a healthy lifestyle

and avoiding a cancer causing

lifestyle, patients can be rewarded

with discounted treatments.

health

points

here!

20


government

of google

The technological infrastructure

required to support precision

medicine is incomprehensibly

complex, developing so quickly

that government can’t keep up.

Free from corporate governence

and equipped with infinite data,

corporations such as Google

gain more control over society.

Google Headquarters

21


offline

countries

Precision medicine requires a

steady stream of data, from lots

of sources. Databases, artificial

intelligence and tracking mean

health, and therefore people

must constantly be online. Infrastructure

supporting this is expensive

and not accessible in all

countries. Countries without precision

medicine will become offline

nations,offering privacy and

non virtual living to those who

want it.

22


weaponised

genomics

As citizens become increasingly

educated in the topics surrounding

of data, genetics and

precision medicine, their value

is more widely understood. As

each of our genomic data is exclusively

attached to us ans individuals.

With this in mind, health

data becomes weaponised, used

for hacking and terrorism.

health

23


h-cast

Advances in technology and precision

medicine have led to human

classifications based on genome

structures and lifestyle and

environment conditions . DNA is

mapped and stored in a ‘Global

DNA Data Bank’. Our healthcare

has been predicted since birth in

a ‘healthcast’, accessed digitally.

The healthiest is based on AI

algorithms and gives instructions

and possible scenarios to follow.

24


After developing our scenarios, we realised

that most of our insights leant

towards darker, more dystopian ideas

of the future. Although this was not necessarily

a bad thing, we were also keen

to think about the positive implications

of future technologies. In doing so, we

looked back at the consequences and

scenarios we had created, and discussed

in our group what was similar between

them. One of our main insights from

doing this activity was that all the scenarios

relied on the idea that technological

infrastructures in the future will be

hugely complex. In order for these infrastructures

to work, a huge amount of

responsibly will be handed over to large

corporations. This will inevitably lead to

a number of ethical questions surrounding

data and trust, but it will also enable

precision medicine to shift into mainstream

treatment and prevention.

We created a new, high level scenario

about the value of collaboration in order

to progress our idea. This reframing

of our scenarios and ideas was really valuable

for us as a group, in order to align

our thoughts and stay on the same page.

25


collaborative

In the future an advanced technological

framework will be the catalyst

for greater healthcare collaboration

between a variety of

stakeholders, allowing precision

medicine to become more established

not only in mainstream

cancer treatment and care, but

also in cancer research.

research

practice

26


In this workshop with visiting designer

Brian Proudfoot, the task was to select

one of the scenarios we had developed

and turn it into a mini-exhibit using quick

prototyping skills. It was at this stage that

we realised we all of our

scenarios were quite dystopian,

and so we created

a new scenario about collaborative

practice which

drew inspiration from all

of our other scenarios.

We wanted to communicate the shift in

the healthcare landscape from the hospital

to the home, and the lines of communication

from various stakeholders

within the patient’s care.

We thought about collaboration

as a socio-technical

value, and tried to imagine

how different stakeholders

might take part in a cancer

patient’s journey in the future,

and how technology

might enable this shift.

Part of our exhibit; laster etched collaborative clinic sign

27


Laser cut acrylic house and a 2029 health calendar

We created a number of different props

which together communicated a vision

of how technology might help to create

a patient-centred health landscape.

We imagined a new environment, away

from the hospital, called a “collaborative

clinic”. Here, patients could discuss their

care and treatment plans with specialist

macmillan nurses, without having to

travel to the hospital to speak to a consultant.

We made a puzzle which would

be used by the patient and nurse in the

collaborative clinic. The puzzle has a set

of pieces which correspond to different

stakeholders, so the patient could personalise

and engage with their treatment.

Lastly we used a calendar which utilised

these same stakeholder icons to symbolise

that the patient could plan their

treatment around their life, and not vice

versa.

Through this mini-exhibit we managed

to encapsulate ideas about collaboration

and patient centred care, but I feel that

we did not necessarily communicate the

role that technology will have in enabling

this collaboration.

This exercise was really helpful for me

as it clarified what I didn’t want the final

exhibit to look like. The colour and aesthetic

was too austere and the artefacts

were too metaphorical with not enough

purpose. We carried this knowledge forward

when designing our final exhibit.

28


Learning from our mistakes in the prototyping

workshop, we sat down as a

group and thought about the type of exhibit

we wanted to create. We did this by

discussing and brainstorming our ideas,

and carrying out individual desk research

to see how other designers and artists

communicate ideas about the future.

As a group, we had worked together

very well and we had developed a

pretty good idea of what we wanted to

explore within the exhibit. From early

on we were interested in exhibiting a

section of a patient’s home, in order to

show the role that technology plays in

their healthcare. We wanted to create

an environment which get quite intimate

and personal, and contrast it with a medical/research

environment.

I was personally very inspired by an exhibit

at the Van Abbe Museum by Design

Academy Eindhoven students, which

prompts questions when seen from the

front, and answers these questions when

seen from the back.

29


GEO-DESIGN: Alibaba. From

here to your home, curated by

Joseph Grima and Martina Muzi

I liked that the exhibit could be

viewed from two sides, so the

viewer can view the images and

objects first, and read about them

after.

‘The Facial Recognition Mirror’ by

Superflux, in the V&A exhibiton

‘The Future Starts Here’

I went to this exhibition in London

last summer and was really inspired

by a few different things.

This experience of this interactive

mirror felt quite intimate and

familiar, which was nice.

30


The bed (sadly) wasn’t that feasible of

an option

We discussed and sketched out a number

of different ideas for the exhibit, but

the central idea always stayed the same.

We wanted to create a section of the

patient’s bedroom and a section of the

clinician’s environment; technological objects

within the patient’s bedroom would

provide the clinician with information

about how the patient was doing during

the trial. This data would be projected

onto the clinician’s wall in the form of

data visualisations. Each dataset would

correspond (and match in colour) to

the technological objects in the patient’s

room.

31


This is the setup that we ended building. We were really detailed in our plan for the

exhibit, and this payed off as we managed to achieve pretty much everything in time.

Charlotte and I painting the clinician’s side of the wall. We had some difficulty doing this

completely straight - but we managed in the end.

32


11.1

We bought a large, wall sized piece of

MDF from the workshop and carried it

back to the studio, where we decorated

it to look convincingly homely. I painted

the bedroom side in a dark grey so that

it would contrast with the clean white

paint on the clinician’s side. We bought

a few objects; slippers, a watch, rings, and

a wallet, which we spray painted different

colours and placed in the patient’s

room. On the clinician’s wall, we used the

same spray paint to create boxes which

corresponded to each object. We designed

some graphics which showed the

object and the type of data it collected.

On a wire grid on the the patient’s wall

we attached a series of artefacts such as

letters and cards which give more insight

into the persona of the patient, and why

she is on the trial. Finally, we drilled holes

through the wall to symbolise the constant

transferral of information between

clinician and patient, and the subsequent

loss of privacy the patient experiences as

a result of being tracked and monitored

at all times.

I wasn’t completely happy that we used primary colours to spray paint the objects, but

they were really visually grabbing and took the paint well, which was what was most

important.

33


Painting this wall was one of my jobs, and due to disagreement about the colour, I ended

up having to paint it about 4 times.

We found a way to hang the top of the wall the the ceiling - but we knew this would have

to be resolved for the work-in-progress show, as it wasn’t ideal

34


Our final exhibit looked into the home

of 38 year old Susanne, a store manager

from Glasgow. Susanne like many others,

volunteers her health and lifestyle data

to the Community Health Index (CHI).

The CHI gathers and processes data

to be used by health providers and researchers

to facilitate the advancement

of precision medicine.

Susanne has recently been diagnosed

with ER-positive breast cancer. In this

scenario the cancer is being explored

through clinical trials. As Susanne is an

active participant in the CHI she has

been quickly identified and prioritised

for the phase one trial.

To allow for a deeper level of understanding

in the clinical trial, data form

various technological devices that Sesame

owns, is shared with researchers

and physicians improving accuracy of

research.

35


The eyemask records the user’s sleeping patterns

A watch records daily exersice and step count, whilst the bank card tracks

spending, and the rings capture body temperature

36


I feel that our exhibit was very coherent

and well thought out, and was presented

successfully, leading to lots of interesting

discussions. We were not overly predictive

about the type of technology that

would exist in the future, but instead

focussed on the idea that technology

would dematerialise, becoming integrated

and passive. In this sense, any and all of

the objects in our persona’s home could

have been used to generate data about

her health, her lifestyle, or her environment.

Our main emphasis in this exhibit was the

idea that in the future, huge amounts of

data will be generated on us as individuals.

This data could, in theory, feed directly

into a feedback loop, which would allow

both clinical research, prevention and

treatment to become more personalised.

We were advised to clean the exhibit up

for the work in progress show - to make

the graphics clearer and print everything

in higher quality. This would make the

connection between the clinician and patient’s

sides even clearer.

We purchased white tiles for the clinicians

side of the wall to make it feel

a bit more like a hospital environemnt.

I took it upon mysef to fix the graphics,

and I feel that I did this well. I

edited and reprinted the data visualisations

and the exhibit description. I

mounted them and stuck them over

the boxes which were previously spray

painted.

We were pretty pressed for time on

the install day, and had to drill sides

into the wall so it would stand. I was

intially a bit frustrated that we didn’t

have time to think this through more

(the workshop had been closed over

the holidays). However, in the end it

still looked really convincing.

I was, alongside the rest of our group,

really proud of how what we managed

to achieve in our exhibit and

how well it addressed all of the necessary

themes; precision medicine,

cancer care and technology.

37


I’m really proud of how the the final exhibit turned out - it was really clear and refined,

which made it easier for us to present it well it in the assessment.

38


39


Technology is becoming increasingly

integrated into the fabric of society. Many

of the products we use to mediate our

everyday our lives are embedded with

sensors which passively collect data, with

or without our active participation. In the

future, the growing presence of artificial

intelligence within our lives will lead to an

abundance of data about us as individuals;

how we live, what we spend our money on,

where we travel, how much we exercise.

How might this third party lifestyle and

environment data be used to facilitate a

more effective selection process for clinical

trials?

40


The first task in the second phase of the

project was to come up with a few different

concepts, or directions, that we

were interested in exploring.

A) The aspect of our exhibit which I

was drawn to most was the use of third

party tracking devices devices for patient

monitoring during trials. Our exhibit projected

a vision of a future world where

sensors integrated in everyday objects is

the norm. This notion is not too far detached

from our currently reality, as many

of us use ‘smart’ technological objects to

mediate our everyday lives. Within our

exhibit we avoided any sort of prediction

as to the type of technologies that

will exist, but I was interested within the

next stage of the project to think about

this further.

B) With use of these monitoring devices

becoming more and more common,

our exhibit also communicated the idea

that technology might afford a shift in

the landscape of cancer care, from the

hospital to the home. With this in mind,

changing clinical environments and shift

towards patient centred care was another

aspect I was interested to explore.

C) Finally I was keen to look further into

the role that lifestyle and environment

data would have in tailoring and individualising

clincial research. This was something

we had discussed a lot in the lead

up to creating our exhibit, but the aspect

we chose to focus on most. I was very

interested to look further into this, as I

felt that it was an interesting way to look

and and understand the role of industry

in the delivery of precision medicine.

41


A) There will be huge

amounts of personal

lifestyle and environment

data generated about us in

the future; how could this

data be used in PM?

B) How might technology

enable a shift in cancer

care, from the hosptial

to the home?

C) How could clinical

research be delivered

in a more individualised

manner, within routine

clinical practice?

42


Whilst creating our initial directions, one

of our priorities was consider who exactly

we were designing for and what their

needs were. In my concepts I focussed

on two different main user groups: cancer

patients in clinical trials and the clinicians

involved in their care.

Our future wold vision was one of collaborative

practice, where many different

stakeholders across the NHS, industry

and education would come together to

deliver precision medicine, enabled by an

advanced the technological framework.

Within the parameters of my lens, looking

at the changing landscape of clinical

trials, there were a number of stakeholders

who could I could have chosen to

focus on, but I felt it would be most interesting

to look at the perspective of

patients and clinicians as we had access

to experts who knew the a lot about

these roles.

43


How could technology change the way clinicians

communicate with patients?

Could responsibility be delegated to AI, opening

up new roles for clinicians?

How might patients gain an increased understanding

of their own healthcare and

treatment?

44


Using tools and methods I learned from-

Studio Andthen in part one of the project,

I made a one minute video which

set out the opportunity I had chosen to

focus on.

I created a documentary-style film which

defined the parameters of precision

medicine as a system which requires not

only a patient’s genetic information but

data regarding their lifestyle and environment,

in order to take place.

The video explained the current shortfalls

with clinical trials; that they have

not been designed to be delivered on an

individual basis, but instead put patients

into categories based on their disease,

age, gender and so on. I used quick paper

sketches and props to illustrate the

difference between a regular clinical trial,

and a precision trial.

The video concludes with clip showing a

person on her phone on the street, with

icons floating above her head to show

the data she is passively generating. On

this clip I wrote the text “In the future

you won’t need to find the right cancer

trial, the trial will find you”. The idea

here being that the third party data we

generate could be used in the future to

match us to studies and trials based on

how we live.

I was happy was the message this video

communicated, but it was lacking a

human element; if this were a service

or product in the future, how would

it change the way people experience

clinical research? This was important

feedback which I received after presenting

the video, which I tried to consider

whilst developing the concept into a storyboard

and defining moments within it.

After developing my final product proposition,

I revisited the film and edited it

to include the product and the human

experience that surrounds it.

45


Stills from the first draft of my film, which I later edited and refined to include

my product proposition

46


Throughout the individual phase of the

project we were able to have regular

feedback sessions with an expert panel

in order to provide greater context and

understanding to our work. Within our

session we were able to talk through our

ideas with the Head of Biostatistics at

Cancer Research UK Clinical Trials Unit,

a Consultant Pathologist, Consultant

in Histopathology and a patient representative

with a plethora of experiences

within studies and trials.

These sessions were hugely beneficial

for my project as I was able to factcheck

many of the queries which I could

not find online. I also gained a lot of new

ideas and insights based on things said in

discussions with the experts.

Through speaking to the consultants

I was made aware of the many barriers

which exist in matching a patent

to a suitable trial, and the shortfalls of

the data gathering tools techniques and

tools which are currently used to gain

quality of life feedback from patients

within trials.

The Head of Biostatistics and Cancer

Research at Cancer Research Clinical

Trials Unit gave some us some valuable

references to current trials and studies

which involving third party data. This

included telling us about a current research

study reviewing purchasing data

from Sainsbury’s customers, to studies

which use Fitbits to gain insight into patients

quality of life after treatment.

Speaking to a patient representative was

especially informative, as I was made

aware of the inner workings of clinical

trials from the perspective of someone

who has taken part in many.

These are the type of current insights

which I could not have gained through

desk research, which allowed me to contextualise

my concept and see that it

was very topical subject to explore.

47


Translating our design opportinites and concepts to medical professionals mean visualing them in a

really simple and effective manner. This was really challenging sometimes, but I found it to be one of

the most rewarding apsects of this project.

48


One of the questions I asked of clinicians

in the expert sessions was to describe

the channels of communication they

have with patients during clinical trials;

how do patients report how they are

feeling, and how did the clinician gather

data regarding the patient’s quality of life?

I was surprised to learn just how analogue

this process was; A) mostly dependent

on questionnaires and surveys

which the patient is given to fill in. The

data from these questionnaires is then

manually entered into a database by

researchers. B) As clinicians might not

have a lot of experiences regarding the

treatments being tested in trials, they

rely on consultations and physical checks

alongside the patient’s qualitative account

of how they are feeling.

My understanding of this process is that

throughout the course of the trial there

is a lot of room for error and miscommunication.

Patients do not always remember

to fill in paper forms, and they

may not be able to remember everything

they have felt in the last week.

I was interested at this point to think

about the role technology could have

in gathering more precise and effective

data during trials.

49


A) Quality of life data

during trials is gathered

using qualitative data in

the form of questionnaires

B) Patients are required

to travel back and fore

to hospital to recieve

physcial checkups

50


A) It is difficult for clinicians to be aware

of all the currently active trials and what

stage these trials are in, at all times. This

makes it hard to identify suitable participants,

as clinicians have to not only

understand the specific details of each

patient, but need to match up these individuals

to trials which all have different

criteria, and are happening at different

times.

B) Lists of inclusions and exclusions for

trial eligibility are long and detailed. This

depends largely on the patient’s medical

history, but also takes into account lifestyle

and environment factors such as

whether the patient smokes, their weight

and their level of literacy. When genomic

sequencing is mainstream practice, the

patients’ genomic information will also

play into their eligibility.

C) Aside working out whether an individual

is a suitable participant, the

clinician has to read a huge amount of

information in order to understand the

specifics of each trial. As trials and studies

are hugely complex, this is a big task.

51


A) Trials and studies are always

in a state of flux

B) The right patient for the

right trial

C) Trials are complex

52


In order to focus on a specific human experience

within my future world, I tried

to lay out ome of my assumptions of the

context which need to exist in order

to enable this experience to take place.

These insights were based on conversations

with experts and future exhibit we

had designed in part one.

A) One of the things that became clear

in conversations with the experts was

that is is usually a specific type of person

who take part in clinical trials. This

is party because trials present a lot of

risk - there are many variables and it

is difficult for a patient to understand

the terms of a trial unless they have a

high enough level of medical literacy to

read the papers. This means that a lot of

the patients who end up not trials are

those who are able and willing to do a

lot of research, which often end up being

those with ore social mobility and higher

socioeconomic status. In order for the

accessibility and diversity of clinical trials

to improve, clinical research needs to be

integrated into routine practice, which it

currently rarely is.

B) Thought this project I chose to focus

on the lifestyle and environmental factors

which might enable precision medicine

to take place in the future; but the

biggest breakthroughs in precision medicine

so far have been those concerning

genomic medicine, especially advances

in genomic sequencing. Though genomic

sequencing is moving evermore into

mainstream medicine and cancer care,

it will likely play a far larger role in the

future.

C) One of the defining features of precision

medicine stems from the idea

that each patient should be treated as

an individual. This is a notion being discussed

more and more frequently in the

NHS, especially in Scotland where government

has set targets for the delivery

of patient-centred care. NHS Scotland is

currently trialling a patient portal which

allows patients to access their own medical

history. In the future, patient’s will be

given more responsibility to understand

and manage their own healthcare, helping

to break down the paternalistic idea

of healthcare which we have currently.

53


A) Clinical research will

be integrated within

mainstream practice

B) Genomic sequencing

will be commonplace

C) Patient records will

be accessible

54


As technology advances, the role of

artificial intelligence within society will

become increasingly significant, enabling

new products and services which will

change the way healthcare is delivered.

Looking specifically at clinical trials and

the delivery and of cancer research, I

began to imagine how AI will impact patients

experiences in the future.

A) In the recruitment process for trials

and research studies, AI might manifest

in the form of a tool/service which could

help clinicians to match patients to trials.

This would relieve some of the strains

I discussed previously that clinicians currently

experience.

B) In the future, people could opt in to

a service gathers the third party lifestyle

and environment data generated by their

daily technological interactions. This data

would feed into the patient’s health records,

forming an in-depth picture of the

way they live. This detailed picture of the

patient’s lifestyle could be used to personalise

and individualise their treatment

and care, and algorithms could be used

to match these patients with relevant research

studies and trials they are which

are eligible for. The patient could then be

contacted by the service or made aware

of the trial/study through their doctor/

clinician.

C) However, patient monitoring technologies

in the future will be more advanced,

and the side effects and wellness

of patients could be tracked from home

using sensors which collect data passively.

This would create a feedback loops

which would allow clinicians to see a

clear and quantifiable picture of the patient’s

health at all times. As a result, trial

participants might be able to live their

lives with less interruption and fewer

trips to hospital.

55


A)

B)

C)

56


The first concept I explored related to

my insights (and conversations with experts)

surrounding data gathering techniques

during trials. This data is used to

understand the patent’s experiences

doing the trial, and the impact that the

treatment being tested has on the patients

quality of life. In order to understand

this, the patient has to evaluate

how they have been feeling; how they

have slept, eaten, experienced pain, felt

nausea etc.

In the future, as technology becomes

more advanced and dematerialises, there

might be more innovative ways to gather

this data through the use of sensors

which the patient can wear throughout

the trial. This way, the data fed back to clinicians

and researchers will be of higher

quality, with less errors.

To explore this concept I came up with

a persona of a cancer patient named

Elaine, who is enrolled in a trial for an

immunotherapy drug called Nivolumab.

During the trial, Elaine is able to wear

sensors embedded into household medical

products - a plaster and contact

lenses, which gather data relevant to the

side effects of the drug she is trialling.

57


A) Elaine

B) The drug Elaine

is prescribed

Common side effects of nivolumab:

Inflammation

Dehydration

Feeling cold

Tiredness

Effects to hormone levels

Raised blood sugar levels

58


My first foray into developing the project

materially was to mock up packaging

for a speculative ‘adhesive monitoring

patch’ which could be worn throughout

the trial. My thought here was that by

disguising the technology within an existing

product, the consultant would be

able to monitor the patient in a way

which was perhaps more seamless than

introducing a completely new product.

C) Smart enabled patches can moni

tor hydration levels, sleeping patt

erns, body temperature and heart

rates.

D) Smart contact lenses can use

tears to measure blood sugar

levels.

59


This concept felt a little bit dull to me - not enough room to experiment

with it

I felt that the visual language of the patch

and packaging was too clinical and did

not feel partuclarly futuristic.

Whilst it did seem plausible that a product

like this might exist and have value

in the future; I felt that there was

limited room for me to design a new

human experience surrounding this

idea. Further I found myself designing

soemthing which I was not necessarily

that interested in. It was for this reason

that after this stage I decided to change

my direction to data collection methods

before the trial rather than during the

trial.

The mock-up packaging which I spent perhaps

a bit too long making on Illustrator

60


My second concept speculates on the

generation of third party data, in a future

world where artificial intelligence is

widely integrated into everyday products

and services. Our data is already used to

personalise our technological experiences

- for instance, Google uses our search

history, GPS and purchasing patterns to

tailor the maps we use to navigate our

environments. On the same street in the

same city, different people will see a different

map depending on our interests.

This use of personal data to design our

human experiences raises a number of

ethical questions; do we have the autonomy

to make our own decisions if each

of our experiences is designed to be

different? What are the motives of the

companies who have ownership over

our personal data?

These are questions I was interested in

exploring in this design concept. However

I was also interested in thinking about

how this data could be used for the

advancement of healthcare as a public

service in the UK, and how the data we

generate passively could be used to help

with the facilitation of cancer research.

The service would allow patients to contribute

their lifestyle and environment

data, gathered by their wearable devices,

bank cards, and devices with location

tracking, amongst the other technologies

they use and own. This data would then

be used alongside their medical history,

to match them with research studies and

trials which are relevant to them.

61


Z

Z

Z

I mapped out some of the forms of data which

could influence a patient’s eligibilty for a trial.

The question I had to answer next was how

could these datsets be recorded?

62


At this stage of the project I was alittle

bit confused about how to develop

my proposition. And in reflection, this

would have been the best time time to

start material exploration and prototyping.

What I did instead was create a storyboard

of my chosen opportunity, and

then create tangible artefacts to show

how a new service would effect the patient’s

experience. I only really managed

to think about one of these moments

before the mid-year review, so I ended

up handing in the project in a slightly

unfinished state. It is clear to me looking

back that was missing at this stage

was theproduct/service proposition that

these communication props tied into.

However, I am still happy that I made

these props, as when viewed alongside

the final model and storyboard that I

developed later on, they provide more

insight into the human experience surrounding

my product.

63


The moment I thought about was the point when the patient receives the news that they have

been matched with a trial. This allowed me to consider the type of insights that could be drawn

from someone’s data, and what would be relevant in their eligibility for a trial.

Letters to Elaine, detailing her eligibility for a clinical trial.

64


65


The feedback I received following the midyear

review for this project highlighted that

there was a lack physical prototyping and

material development. I had amounted a

number of rich insights from my research,

and had a good understanding of the

direction that I wanted for my final design

proposition - but I had yet to bring this

concept to life by making it tangible.

I put a lot of effort into responding to this

feedback over the Easter break - and I had

a lot of fun doing so. I developed a number

of concepts and models which resulted in a

resolved final proposition.

Revisiting this project after not working on

it for a while was really valuable for me, as

I was able to take a step back from all of

the research I had carried out, and see the

project with fresh eyes.

66


Inspired by projects I had seen previously

from design studios such as Extrapolation

Factory and Studio PSK, I decided

to take a playful, speculative approach to

developing my final proposition.

I visited the Glasgow Play Resource

Association’s Scrapstore and bought a

big bag of scrap materials. I took these

materials back to the studio where I

used them to create models - assembling

different objects together to create

a series of speculative products and

devices - and with each physical model

came new ideas.

The philosophy I took with this was definitely

one of thinking-through-making.

Rather than spending too much time

considering the intricacies of systems

surrounding the concepts, I tried to think

more about how they might fit into to

somebody’s life, and the experiences

they would enable.

I bought a whole range of secondhand/donated things from the Scrapstore,

which I then used to create my prototypes

67


‘Student work in Progress’ from

Anthony Dunne and Fiona Raby’s

Designed Realities Studio at The

New School in New York.

A model from one of Extrapolation

Factory’s projects - ‘Futures

Capsules’

A model from Studio PSK’s project

Reciprociti Bank

68


13.

The initial picture I had formed in my head

of a trial matching service was one which

utilised existing data - collected by the

patient’s technology (wearables, bank cards,

phones). As I was made aware of during

the expert sessions - If this data could

be centralised, it could be used to build a

detailed picture of who the patient was

and how they lived. The part of this that I

struggled with was how I would make

the service tangible, if the inputs already

existed?

I decided that rather than focussing on how

the data would be gathered, I would focus

on the experience of the patient in finding

out whether they have been matched with

a trial. I began to imagine what it would be

like if each NHS patient had the option to

contribute data into their CHI (Community

Health Index) profile. The patient’s fingerprint

would link to their CHI profile, and

they could simply place it on a small scanner

in their home to be notified of studies

and trials which would suit them.

69


User scans finger print and device connects to their CHI profile, light glows green if a trial matches their data

70


The second idea I wanted to address

through prototyping was how a patient’s

environment data might be gathered

though function-specific tools. My first consideration

was how much information can

be detected about someone from gaining

an insight into their home environment.

I created an antenna-like model that would

sit passively on the user’s computer, gathering

all of the signals transmitted throughout

the house. From these signals, the product/

service could deduct insights about the user’s

living patterns; their movements, activities

and communications.

71


This prototype was really simple but quite effective- and led my onto the next

idea.

72


.1

Data-Floot

The datafloot gathers all of the ongoing

digital interactions in its surrounding

environment. An algorithm then categorises

this data to form behavioural

insights regarding the individual’s lifestyle

and environment.

Building on the idea explored in the previous

concept, I started to think about

the role that voice recognition could

play in collecting environment data. I was

very fond of this concept - but felt that

it was possibly a bit too abstract to take

forwards.

Primary Floot

With a capture radius of 50 feet, the

primary floot should be placed in the centre

of the user’s home. A secondary floot

may be used elsewhere to boost capacity.

73


Modem

Data recorded by the primary and

secondary floots is collected in the

modem and uploaded into the server

Content Filter

To avoid privacy issues and data errors

from neighbouring homes and visitors, the

device detects unfamiliar signals and filters

them out

74


.2

One of the shortfalls of the prior concepts

was the fact that they focussed specifically

on the home, and did not take changes in

the patient’s environment into account.

A device which could be carried around

or worn by the patient would lend itself

well to geotagging. This would open up a

whole range of opportunities for gaining insights

into their life. The places they visit, the

distance they travel, the type of transport

they use and their exposure to pollution

could be all be monitored through

geotagging.

Alongside this, a portable device could

monitor digital interactions; from communications

to payments. This could provide an

understanding of the patient’s eating habits

and relationships - in turn forming a coherent

picture of how they live.

I created a model of a device with two pocket-size

‘environment indicators’ which the

user would carry with them in a day to day

basis, in a purse or a pocket. Whether they

have been out for the day or just at home, the

user would always keep the device close-by.

I really like this prototype and I could really

imagine how it would sit in the user’s home,

and integrate into their life. I now needed

to design device which linked to this one,

for the gathering of lifestyle data.

75


76


Lifestyle data is mostly data corresponding

to the user’s body - measuring their physical

movement and tracking their vital signs;

for instance their temperature, pulse, blood

pressure, respiratory rate, responsiveness

and oxygen levels.

These are the sort of thing that existing

wearable devices such as Fitbit’s and Apple

Watches will be able to record in the future,

but I wanted to design a standalone device

that I could build an experience around.

My previous idea for wearable monitoring

patches was something that I could see existing

in the future - but I this felt that this was

too discreet and not quite tangible enough to

exist within this concept.

I found a pack of bendy hairbands in the

scrap store, and I began to play around with

them, envisioning them as simple wearable

devices. I thought about how a user might

wear them, and how they act as one device

within a larger system.

77


Testing out different ways of wearing the band - the shape is simple but I also found

it to be quite visually engaging - something that you want to reach out and touch.

Another item which I found in the scrap store - a watch stand. I really liked the way

that the bands looked when docked on this stand,.

78


I took two elements of the the previous

prototypes forwards for my final

concept. I felt that the visual language

of these objects drew me in.

One of the apsects I liked about this concept

was the fact that it was really simple.

As the topic surrounding the proposotion

is complex and difficult to understand,

I wanted to give the product

a name and write a manifesto that

also helped to simplify it a bit.

The next step after this was to refine

the form of the product further.

79


“Cancer is complex. So are clinical trials.

In the future, advances in precision medicine will allow for a simpler

and more efficient clinical trial selection process. Patients will

no longer be placed in boxes based solely on which type of cancer

they have - they will be matched with trials that they are likely to

repond well to - based on data regarding their genomics, lifestyle

and environment.

TrialSeek is a service which gathers and analyses an individual’s lifestyle

and environment data in order to match them with suitable

trials. The service is centred around two devices: a Lifestyle Indicatior

and an Environment indicator. Each indicator gathers a unique

set of data, specific to the user.

By assessing this data, TrialSeek can find the right trial for the right

patient, at the right time.”

80


I created a few different prototypes of the

environment indicators, based on the initial

form. I actually really liked the colours in the

initial models, but felt that it would be more

fitting for the model to be white in order to

imagine in within a future context.

I created the final model using CAD software

and 3D printed it in the school. This

meant that I was able to create an object

that looked more like it could be a piece of

commercial technology.

81


I was pleased with the way that the

end result looked - I think the form of

the objects are really engaging.

82

One thing that I think could have really

benefitted them would have been to

create packaging with user instrutions.

This would have helped me to communicate

how they work, and how

they they would fit into the user’s life


Elaine is a single-mother to two schoolaged

children. After going to the doctors

for a routine checkup, she was diagnosed

with metastatic melanoma. With quite

a rare form of cancer, there were few

treatment options available to Elaine.

She was made aware of a few clinical trials

- but she wasn’t sure how to know if

they were right for her.

Luckily, her oncologist made her aware

of a comany named TrialSeek, that could

help clinicians to match her with a trial.

She registered with the service through

the NHS, and a week later she received

her monitoring devices through the

post. She set up the devices in her hallway,

so that she would remember to use

them every day whilst carrying out her

usual activites.

As Elaine’s cancer was detected at an

early stage, she could continue to do her

normal activites, including regular exercise.

Her lifestyle tracker recorded this,

feeding the data into her digital health

records.

Her spending patterns eluded to how

she eats, location tracking shows the

places she has visited and travelled to,

and her online presence via social networks

gave insight into the way she lives.

83


Her digital health record began to reflect

not only her physical health - but

her lifestyle and environment data,

which are important factors in assessing

whether she is right for a trial.

Collectively, these insights fed back to the

clinicians involved in Elaine’s healthcare.

They helped to give context to how she

was feeling, and highlighted any trials

that would suit her.

As a parent, Elaine’s biggest worry is that

treatment be aggressive, and the side effects

will damage her ability to raise her

children.

She makes her clinican aware of these

priorities whilst reviewing her medical

and lifestyle records with her oncologist.

The oncologist desribes one particular a

trial highlighted by the TrialSeek software.

The trial highlighted by TrialSeek is for an

immmunotherapy drug named Bionoliav.

the drug belongs to a class of drugs called

checkpoint inhibitors, which “release the

brakes” on the immune system, allowing

a stronger attack against cancer.

84

The data collected by TrialSeek showed that

Elaine met all the criteria for the trial, and

as the drug works in a way that is less aggressive

than other treatments, was a good

match for her. She received a letter explaining

the trial in greater detail.


TrialSeek is designed to be simple and

unobtrusive. The forms of the devices are

paired back, so that they fit into the home

environment, rather than the hospital.

The wearable lifestyle indicator is worn

around the wrist everyday, and placed

back on its dock at night time. The same

goes for the environment monitor, which

is carried throughout the day in the user’s

pocket, wallet, purse or handbag.

The user receives two of each indicator,

so that one will always be available if they

forget to return the other to its dock.

In a scenario where both indicators are

out of charge, or the user forgets to take

an indicator out with them, only a bit of

data will be lost. Though this would not be

the end of the world, in to minimise the

chances it happening - the docks are kept

somewhere closeby, such as a bedside table

or one close to the front door.

85


86


19.1

Though my final model was effective and

communicated my idea well, there are

still a few things that I would refine with

more time.

I would definitely consider the details of the

devices more, so that there were more suggestions

of how they turn on, where exactly

they would sit and how they should be used.

87


88


89


As I started to make physical prototypes, I found that my

approach to thinking about the project began to loosen up.

It allowed me to think about the final proposition without

over-analysing each individual aspect. This was a valuable

lesson to me and something which in hindsight, I could have

started earlier on. Nevertheless, I feel really pleased about

the direction my developed proposition took. I feel that

through the development of TrialSeek, I have illustrated

clearly how technology and precision medicine might impact

the human experiences surrounding cancer research.

The visual language of the prototypes and final model are

really engaging - and I think they bring the research to life.

I can see a clear line of thought running throughout both

parts of the project, and see that my final direction is closely

informed and linked to the exhibit we created in part 1.

I altered my video for this project in order to capture the

human experiences that surround TrialSeek, and I think

I was successful in doing this. The video was mostly a

vehicle to communicate the tone of the product and make

it more human. What is missing from the video; the details

about the system surrounding TrialSeek - I have included

within the updated storyboard.

Overall, this was a fascinating project that I thoroughly

enjoyed. I’m really proud of the work that I produced, and

that I managed to respond to feedback in order to create a

convincing and thought provoking proposition.

90


91


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