Salty Lives - Unravelling Healthcare Through the Lens of Cystic Fibrosis

Ute Schauberger 

Salty Lives 

Unravelling Healthcare Through the Lens of Living with Cystic Fibrosis 

MDes Design Innovation & Citizenship 

www.uteschauberger.com


Design Innovation and Citizenship 

2015 / 2016 

www.uteschauberger.com

Salty 

Lives 

Unravelling Healthcare Through the Lens of Living with Cystic Fibrosis 

Salty Lives is a 

design experiment 

into how design-led 

approaches might 

begin to unravel, 

interrogate, 

and re-envision 

healthcare by 

exploring it through 

the lens of living 

with cystic fibrosis. 

By investigating this specific context, 

its barriers, and opportunities, it 

aspires to also interrogate the 

organisational structures, services, 

and systems around healthcare more 

generally. It uses design research 

to critically examine emerging 

patterns of living, to address and 

explore the questions they throw 

up, and to uncover and articulate 

alternative trajectories. Salty Lives 

is an inquiry into how we might live 

with chronic illness, but also into how 

we might design. It explores how 

design practices can be applied to 

reimagine the cultures, institutions 

and systems that shape our world. 

3 

4

Contents 

Part 1 

A Journey Through Design 

Here I discuss and reflect on my role 

and where I started, how this project has 

transformed my design practice, the 

methodology and methods I applied, and 

the ethical considerations involved. 

Part 2 

A Journey Through Healthcare 

Here I illustrate my journey through the world of 

cystic fibrosis and healthcare, I talk about the context, 

findings and insights of this project, and describe how 

I got from issue to opportunity and design response. 

Cystic Fibrosis 

39 

What causes CF 

Healthcare 

49 

The Healthcare System 

People with CF 

57 

Working at the Extremes 

59 

Landscape 

61 

Appointment Journey 

Design Response 

73 

What if 

75 

Compass 

80 

More Questions 

Part 3 

Appendices 

Here I include references to other people’s work that 

shaped this project, as well as some of the data I 

collected during my own research in more detail. 

85 

Bibliography 

90 

Image Credit 

99 

Life Expectancy Survey 

101 

Close-Up 

Interview Transcript 

13 

Where I Started 

25 

Methods 

41 

Symptoms 

51 

Experts and Case Studies 

63 


81 

Testing and Reflection 

91 

Expert Interviews 

103 

Impressions from 

Digital Ethnography 

17 

Design Practice 

and Approach 

27 

My Role 

42 

What this means 

53 

Emerging Trends 

65 

Life Journey 

95 

Case Study Summaries 

23 

Methodology 

31 

Ethics 

45 

Treatment 

67 

The CF Community Online 

69 

5 

Close-Up 

6

Introduction 

7 

8

SALTY 

/ˈsɔːlti,ˈsɒ-/ 

1. 

tasting of, containing, or preserved with salt. 

“the bacon will be quite salty” 

synonyms: salt, salted, saline, briny, brackish 

2. 

(of language or humour) down-to-earth; coarse. 

“her wild ways and salty language shocked the local gentry” 

“the Princess has a salty sense of humour” 

synonyms: lively, vigorous, spirited, colourful, sparkling, zesty, zestful, 

spicy, sharp, racy, piquant, pungent, tangy, biting, informal, punchy 

(Oxford Dictionary) 


People with CF have more chloride 

(salt) in their sweat than someone 

who does not have CF. Therefore 

their skin tastes extremely salty. 

So do their kisses. And their tears. 

Cystic fibrosis (CF) is one of the UK's 

most common incurable chronic 

conditions caused by a single faulty 

gene that controls the movement of 

salt and water in and out of cells. CF 

slowly destroys all internal organs 

as they become clogged with thick 

sticky mucus. This results in chronic 

infections and inflammation in the 

lungs, difficulty digesting food, as 

well as a range of other challenging 

and life-limiting symptoms. 

I have lived 

with CF for 

26 years. 

It’s been 

wonderful, 

if a little 

breathless. 

9 

10

PART 1 

A Journey Through Design 

Here I discuss and reflect on my role 

and where I started, how this project 

has transformed my design practice, 

the methodology and methods I 

applied, and the ethical 

considerations involved. 

11 

12

Where I Started 

13 

14

A Salty Life 

I have lived with CF for 26 years, 

and it's been wonderful, if a little 

breathless. I have also lived with the 

healthcare systems of several different 

countries, which has not always been 

wonderful, but kept me alive. I am 

excited by the recent developments 

and new hope the future promises for 

CF, and healthcare more generally. 

As well as skeptical about who the 

current system and its dynamics really 

serve, and whether it will be able to 

live up to this great potential. 

Anthropology 

I am also a graduate in anthropology and 

sociology, and for better or worse, I see 

context, cultures, and systems everywhere. 

I also know that our current systems are 

constructed and designed - sometimes 

consciously, sometimes less so. This means, 

they can be unravelled, deconstructed, 

changed, and designed in a different way 

(Hill, 2012). Aside from my way of looking 

at the world, this background also shapes 

how I see and conduct research. The 

methods discussed below have been heavily 

influenced by ethnography and actor network 

theory as an approach and research practice. 

Design 

After the last 12 months I can confirm, 

I am also a designer. I have adopted 

and adapted new ways of doing and 

documenting research through design, 

for design, and about design. Most 

importantly, I have learnt that research 

can move from analysis - revealing 

how things are - towards synthesis - 

suggesting how things could be - (Hill, 

2012), something which anthropology 

could never offer. Looking in depth at 

what is happening and where things are 

going, throws up fundamental questions 

that are both exciting and worrying. And 

I believe design is about addressing 

and exploring them, articulating 

alternative ways of being, opening larger 

discussions, challenging and critiquing 

what is sometimes seen as inevitable, 

and uncovering and shaping preferable 

trajectories (Schulze, 2013). 

15 

16

Design 

17 

18

Design Practice and Approach 

The Design 

Outcome 

This project has been a 

conversation with design, 

citizenship, anthropology, and 

living with CF. As a result how I 

define and understand 'design' has 

shifted and changed throughout 

these weeks. My thinking and doing 

has been shaped by work that is 

easiest to summarise as strategic 

design. And sometimes it was easy 

to locate these concepts, theories, 

and frameworks within my practice, 

other times my experience of 

applying them was very different or 

had limited success. 

Designing for citizenship means 

considering the broader application 

of design practices for society 

and its organisational structures, 

services, and systems. They make 

up our social contracts, or the 

conditions in which society and 

culture unfold, and I would argue 

that they can be changed and 

redesigned at both the individual 

and institutional level. With this 

project, I looked at healthcare, but 

worked with a specific disease 

as 'an area of inquiry, allowing for 

investigations into specific contexts, 

barriers, and opportunities, which 

then inform the development 

of more generalised, systemic 

improvements' (Boyer et al, 2013:9). 

However, it often proved difficult 

to keep track of both these levels 

- to reflect meaningfully on the 

impact of one on the other, and 

to potentially iterate accordingly 

- while still in the middle of the 

research process. Designing 

research methods that themselves 

produce insights which zoom in and 

out of the individual and institutional 

level helped me to achieve this 

better, but it was much more 

difficult to also implement this when 

working on my design response. 

Still, I see all design as directly 

involved in creating culture, ways 

of being, and patterns of living. 

And I see no reason to not use 

design practices consciously and 

purposefully towards articulating 

certain values or formulating 

a vision. What Hill (2012) calls 

strategic design, then has 'a 

direction, over and above being 

a set of tools, a vocabulary, and 

a series of projects'. For strategic 

design, a new form of design 

challenge is the 'vital, messy reality 

of taking a vision, transforming this 

into a strategy and then making 

it happen' (Hill, 2012). Within my 

project I found it particularly 

challenging to transform vision into 

a concrete prototype that is easy 

to understand, can be tested, and 

iterated. It was difficult to decide 

how to communicate the larger 

vision within a concept, to narrow 

down what I need to know to move 

forward, how to test my ideas within 

my limited access and time-frame, 

and how to decide on their success 

or failure. I agree with Boyer et 

al (2011:113) that when working 

in this space, the challenges are 

'as much about vision as they are 

about designing the transition to 

accomplish that vision.' 

A way forward lies in a different 

and more investigative conception 

of design itself, 'one not overly 

focused on problem solving, or 

pretending to embark towards 

a resolution with a clear idea 

of the answer' but based on 

prototyping and iterating. It is about 

interrogating affordances and 

making small moves that might 

shift the pattern at the macro 

level even when it is impossible 

to understand the whole system 

fully (Hill, 2012:). Design research is 

then a practice where 'observing 

is intrinsically tied to designing. 

Without the designing happening 

there can be no meaningful 

observation.' (Blythe, 2010). 

Analysing and presenting data 

is followed by synthesis and 

resolving into a course of action. 

And in fact, the overall challenge 

might not be to create either 

visions or transitions through 

design methods, but to produce 

systems that make this approach 

possible and that can learn 

from failure. 

My approach to arriving at a design 

response for this project was then 

to fold my insights into a proposal 

(Boyer et al, 2013:31). Still, the 

outcome is not a preconceived 

solution, but an improvisation 

from which one might learn a 

course of action (Boyer et al, 2011). 

Prototyping in this sense assumes 

that 'what we make today does 

not have to be the limit of what 

we hope to accomplish tomorrow' 

(Boyer et al, 2013:18). And my design 

response should be read as an 

assertion that the idea of design can 

be extended to suggest that 'the 

making of things can also affect the 

formation and function of the more 

diffuse layers around it: the cultures, 

institutions, and systems that shape 

our world.' (Boyer et al, 2013:18) 

19 

20

and Methods 

22 

Methodology 

21

Methodology 

My approach to exploring healthcare 

as a system through the lens of living 

with CF consisted of a series of activities 

iterating between zooming in and out of 

this network, its actors, and their relations. 

Throughout, I mapped and documented 

the resulting findings and insights, and 

aimed to explore emerging trends and 

behaviours. The design outcome is a 

response to some of the issues and 

directions this process revealed, but is 

also intended to ask further questions 

and provoke reflection. 

23 

24

Methods 

25 

Visual Mapping 

First, I identified the main actors 

within CF care based on personal 

experience and knowledge, and 

started mapping their relationships 

and motivations. I checked this 

against information from the CF 

Trust and NHS, and added to 

it throughout the project. This 

approach is loosely based on 

actor network theory as a research 

method (Latour, 2005). Taking 

people with CF as starting point, 

I explored and began to unravel 

some of the network and relations 

that make up healthcare today. 


Next, I spoke to as many actors 

within this system as possible, 

to explore diverse angles on 

healthcare. During these interviews 

I tried to focus the conversation on 

the bigger picture, the future of this 

system, and where opportunities 

lie. However, this approach did 

not prove particularly successful, 

many people had simply never 

considered these questions and 

even when leading with a proposal 

as I tried later (Boyer et al, 2013:30), 

they found it difficult to give an 

opinion on the spot from what 

they saw as their isolated position. 

Instead, I changed my approach 

and focused on their own work right 

now, and on testing and revising 

some of my assumptions about 

their perspective and contribution. 

Literature and 

Case Studies 

I was particularly interested in 

the social innovation this network 

has experienced alongside 

technological changes, e.g. in how 

knowledge is created, negotiated, 

and diffused between different 

actors. I agree with Boyer et al 

(2013:9) that new ideas 'may be 

conceived of in the abstract but 

ultimately must be built amidst 

and within the old'. Thus I aimed to 

develop a grounded understanding 

of where this system and its actors 

might be headed in the future, and 

looked at existing literature and 

case studies, after expert interviews 

could not really answer this. I looked 

at emerging behaviour and trends, 

but also at case studies where 

these conversations had been 

driven forward more concretely, 

within and beyond healthcare, 

and where the traditional onedimensional 

view of how to address 

disability and chronic illness had 

been challenged. 

Ethnography 

Through ethnography, I aimed 

to explore how people with CF 

relate to this complex system of 

healthcare and its future more 

specifically. In this sense ‘exploring’ 

meant to observe, listen and 

experience a social setting and 

relations through participant 

observation which can provide ‘rich, 

rounded, local and specific’ data 

for analysing one particular case 

(Mason, 2002:89). It allowed me 

to look at a range of dimensions 

including the physical settings 

and non-human actors within 

this network (Mason, 2002:85; 

May, 2011:178). It also provided an 

opportunity to study interaction as 

it occurs in specific contexts rather 

than reported or constructed within 

retrospective accounts (Mason, 

2002:85). 

Digital 

Ethnography 

On the other hand, in all networks 

people are already 'busy 

interpreting and understanding 

their environments' (May, 2011:170), 

and to find out more about their 

perspective, I started exploring the 

online world of the CF community. 

Every week, I read one blog by 

someone with CF in detail. I also 

looked at the bloggers' Twitter and 

Facebook feeds, and paid close 

attention to reoccurring issues 

around life with CF. As CF patients 

cannot meet each other, this online 

space has thrived in recent years. 

It is a digital public space where I 

could observe as well as participate 

in how people construct their 

identity as someone with CF, how 

they see and describe themselves 

as an actor within the healthcare 

system, and how these roles can 

be in conflict and characterised by 

control and resistance. 

26

My Role 

27 

28

The resulting analysis is of course 

not a ‘full and neutral account of 

a setting or set of interactions’ 

but selectivity and perspective 

inadvertently play a role for these 

findings (Mason, 2002:89). As 

my research is not and cannot 

be independent from my own 

biography, this project should be 

read with an awareness of my 

own context and connection to 

CF. Of course there are tensions 

associated with this, and how I 

interpret findings is affected by my 

double roles as design researcher 

and person with CF. Everyone I 

spoke to during these weeks was 

informed that I live with CF, and 

thus made their own conclusions 

on where I stand relating to the 

healthcare system, which of course 

shaped our interactions. I have been 

both observer and participant for a 

long time when it comes to CF care, 

and even when I reflected on my 

interactions with healthcare more 

in-depth during these 12 weeks 

specifically, clearly much of my 

more long-term experience has fed 

into this project. Being accustomed 

to CF and its care helped me 

gain deeper understanding as I 

could draw on this experience to 

comprehend actions in context 

(Coffey, 2002). My experience of 

this setting is consequently itself 

a reconstruction and I cannot 

assume that it matches that of other 

actors. To avoid misrepresentation, 

I have however complemented 

ethnographic research with 

methods focusing more on the 

experience of others as described 

above (May, 2011:136). I am part of 

the world I aim to understand and 

design for, but this is ‘not a matter 

of methodological commitment, it is 

an existential fact’ as the presence 

of a researcher will always affect 

the research (Hammersley and 

Atkinson, 1995:15). Already being 

part of the scene and accepted 

to some degree could in fact be 

argued to keep this effect at a 

minimum and had other advantages 

as it was easier to get access to and 

build rapport to certain participants. 

29 

30

Ethics 

31 

32

My own connection with CF also 

helped me when approaching 

sensitive topics and conducting 

research ethically. I know the 

risks of cross-infection and only 

engaged others with CF online 

rather than in person, I knew it was 

important to be flexible with time 

and research methods as people 

might be experiencing ill health, 

and I had an idea of what not to ask, 

where to stop, and when to take 

breaks. I am also aware of some 

of the complexities around ways 

of portraying people with CF, thus 

ethical considerations have not only 

been built into my research process 

but also into delivering its results. 

This helped not only to protect 

participants, but also myself. 

I felt it was important to only contact 

people with CF who are very public 

about this online, who act as patient 

advocates, and activists. I engaged 

them because of their connection 

to CF rather than as 'patients' within 

the NHS. This helped to avoid some 

of the problems related to revealing 

identities and attitudes, and using 

private information or patient data, 

but it also enabled this project to 

explore a much deeper and wider 

picture of health and illness. 

Wherever possible, I asked 

participants about any other 

concerns they might have 

regarding ethics and privacy, and 

informed them that they can stop 

the conversation at any point, not 

answer questions, and change 

their mind later about how our 

conversation will be used. I also 

aimed for transparency by keeping 

people updated and asking for 

consent to how their stories are 

used with progress and outcomes 

before publishing this book. This 

was also important to some of the 

experts who work at different and 

potentially opposing ends of the 

healthcare system. 

Still, informed consent is not a 

straight forward issue when it 

comes to digital ethnography. 

Websites, blogs, and forums 

can be considered public digital 

spaces, and being seen and heard 

as someone with CF is part of the 

agenda of many activist patients, 

and they implicitly encourage 

to share their stories. Yet explicit 

consent from every single person 

involved was often not possible and 

data from digital ethnography has 

therefore been anonymised within 

this book. 

In my experience, it can be 

empowering to be asked about 

living with CF, to reflect on this 

experience, and to imagine 

preferable futures. Throughout this 

project, I tried to give opportunities 

to do so as a way of giving back to 

the CF community and participants. 

33 

34

PART 2 

A Journey Through Healthcare 

Here I illustrate my journey through 

the world of cystic fibrosis and 

healthcare, I talk about the context, 

findings and insights of this project, 

and describe how I got from issue to 

opportunity and design response. 

35 

36


37 

38

What causes CF 

The abnormal gene causes the protein controlling the movement of salt 

and water to not work properly. It retains salt, which leads to thick and sticky 

mucus plugs throughout the body. 

FATHER 

One copy of the 

faulty CFTR gene 

MOTHER 



CF is an inherited disease 

and more than 2.5 million 

people in the UK carry the 

faulty gene, around one 

in 25 of us – most without 

knowing. Each week five 

babies are born with cystic 

fibrosis, and there are 

around 10,500 people living 

with CF in the UK. 

airway wall 

Normal airway 

thin layer of mucus 

Airway with cystic fibrosis 

thick layer of mucus 

CF carrier 

CF carrier 

CHILD 

CHILD 

CHILD 

CHILD 

outside cell 

mucus 

inside cell 

Two copies of 

normal CFTR gene 





Two copies of the 


chloride ions 

Does not have CF 

CF carrier 

CF carrier 

Has CF 

39 

(All medical information, statistics, and medical diagrams about cystic fibrosis and its biology have come from the UK CF Trust 

website and publications available at http://www.cysticfibrosis.org.uk) 

40

Symptoms 

This thick mucus plugs up the 

lung, pancreas, and sinus. It causes 

malnutrition, frequent pneumonias 

and inflammation in the lung, liver 

disease, diabetes, and low bone 

density. Eventually CF leads to 

respiratory failure and death as the 

airways collapse or the damaged 

and inflamed lungs become overly 

stretched. At the moment, CF is 

treatable but not curable. Around 

half of the CF population in the 

UK will live past 41, and this is a 

huge improvement from a median 

survival age of around 20 years as 

recently as the 1980s. Still, every 

week two people in the UK die of 

CF, and half those are aged 28 

or younger. 

Lungs 

Frequent productive coughing, 

shortness of breath, infections, 

inflammation, bouts of bronchitis 

and pneumonia 

Pancreas 

Inability to digest food and 

malabsorption of nutrients and 

vitamins, diabetes, ongoing 

diarrhea and stomach pain, 

dehydration and malnutrition 

despite huge appetite 

Skin 

Abnormally salty sweat and salty 

tears, finger clubbing 

Sinuses 

Chronic infection and 

pain, nasal polyps, 

equilibrium problems 

Intestines 

Blockage and constipation 

Bones 

Low bone density, 

osteoporosis, arthritis 

Liver 

Liver damage 

41 

42

What this means 

What this means for most people 

with CF is coughing almost 

constantly, bringing up sticky and 

at times bloody mucus, being 

exhausted quickly, being in pain, 

having frequent infections and 

pneumonia, and dealing with 

indigestion. Many people with CF 

describe how they feel as ‘drowning 

from the inside.’ It also means 

worrying about declining health, 

the future or an early death, and 

managing other people’s worries 

and fears. 

It means taking over 30 pills, doing 

several hours of boring and painful 

physiotherapy, doing regular 

exercise, maintaining a high fat 

diet, and fitting in life in between 

- every day. Some days, it means 

lengthy hospital check ups, long 

hospital stays, pharmacy visits, 

frustrating test results, esxplaining 

your condition to others who 

might dismiss it, conflicts and 

misunderstandings with doctors, 

missing school or work days, tube 

feeding, IV drips, oxygen machines, 

pain and exhaustion, various side 

effects, forgotten treatments and 

feelings of guilt. 

Neither of these is an exhaustive list 

of complications. And both leave 

out the good parts of life with CF. 

For example the excitement of your 

best friends kidnapping you and 

your oxygen machine from hospital 

to go to the cinema. Or feeling 

strong and free like a superhero 

walking by the sea where the salty 

air makes breathing easy. Or the 

sweetness of your first kiss after a 

period of not being able to kiss for 

lack of breath. 

43 

44

Treatment 

Treatment of CF consists mainly 

of methods to remove and thin 

mucus and medications to treat 

digestive problems 

and infections. 

Recently, a new type of 

treatment has given people with 

CF hope. The precision medicine 

Orkambi for the first time tackles 

the underlying cause of cystic 

fibrosis - the genetic defect - 

rather than just its symptoms. 

However, it is very expensive, 

and its long-term value and 

impact are still unsure. So far the 

NHS has rejected to take on the 

costs of Orkambi. 

Physiotherapy 

breathing exercises to 

cough up mucus 

PEP and Flutter 

breathing through 

them creates pressure 

and vibrations in lungs 

to loosen mucus 

Vitamin and Nutrition 

Supplements 

The Vest 

vibrates to 

loosen mucus 

Lung Transplant 

when otherwise 

reaching end of life 

Nebulisers 

inhaling medication 

that helps break up 

mucus or fight bacteria 

Antibiotics and Steroids 

oral or IV, to fight 

bacterial infections 

and inflammation 

High Fat Diet 

to maintain weight 

Tube Feeding 

when absorbing too 

few nutrients from food 

Long-term 

Oxygen Therapy 

when blood oxygen 

levels dangerously low 

45 

46

Healthcare 

47 

48

feel better, 

find a cure, 

live well 

The Healthcare System 

ambiguous 

position and 

interest, many 

stakeholders 

speak out 

PATIENTS 

PATIENT 

ORGANISATIONS 

collaborate 

collaborate 

PHARMA 

INDUSTRY 

sell products, 

make profit 

treats 

exchange data 

appeals to 

sells drugs to 

approves drugs 

treat, heal, 

prolong life 

NHS 

funds 

GOVERNMENT 

lower cost and 

increase efficiency 

of healthcare 

NICE - National Institute 

for Health and Care Excellence 

achieve value for money, 

guarantee safety, make 

ethically and financially 

viable decisions 

mindsets 

expectations 

data 

knowledge 

ownership 

ethical value 

monetary value 

WIDELY VARYING 

DEFINITIONS OF SUCCESS 

Delivering these treatments 

and looking after people with 

CF is a complex task. Recent 

developments have meant much 

better quality and length of life 

for people with CF, yet there are 

still many challenges. Today’s 

CF care is the product of a wide 

range of technologies, decades of 

accumulated medical and clinical 

breakthroughs, pharmaceutical 

research, and political innovations 

required to set up and run public 

healthcare. This map looks at the 

relationships between some of the 

actors involved in delivering care 

and shows how value, attitudes, 

and knowledge moves around 

this network. 

Of course healthcare is more 

complex than this diagram 

can demonstrate. Yet, even 

when beginning to map these 

connections from my research, 

it quickly emerges that its actors 

have very different motivations 

and definitions of success and 

value - sometimes complementary, 

sometimes clashing. Moreover, 

there are power imbalances, and 

often the bigger picture at system 

level does not figure into everyday 

work carried out in isolation. This 

means that change and innovation 

within this network can be 

expensive and slow, and only 

reflect a few particular interests. 

49 

50


To get a closer view of this system and explore different angles 

and viewpoints in more detail, I interviewed a range of people 

involved in diverse parts of the healthcare network. 

As already shown in the system map above, they paint a picture 

of a complex system with many diverse actors, each with 

different interests, knowledge, and definitions of values - who 

sometimes clash, sometimes complement each other, or act 

insularly. They also talked about ways in which their own work 

has been changing and where future opportunities might lie. 

Much of it seems to happen outside the public health realm, 

and in isolation rather than being a coherent effort at moving 

things forward. 

Case Studies 

To find out about emerging trends I also looked at case studies 

within and beyond healthcare, where the traditional onedimensional 

view of how to address disability and chronic illness 

have been challenged. They complicate these questions, break 

down the patient / expert dichotomy, open up possibilites, and 

allow hackability. 

(for more detailed interview and case study summaries see appendix p. 18 - 27) 

51 

52

Emerging 

Trends in 

Healtcare 

To shed more light on where things 

are headed, I complemented this 

with further secondary research on 

what is happening at the cutting 

edge of healthcare and what the 

future might look like in this space. 

This is a summary of interrelated 

emerging trends within and 

beyond healthcare. 

(This is based on readings listed 

in ‘Cystic Fibrosis and Healthcare’, 

appendix p. 9 and analysing case 

studies described in more detail in 

appendix p. 22) 

Precision Medicine 

Medical knowledge is based on 

the average response to particular 

treatments. Today there are more 

and more programmes collecting and 

interpreting genomic data that can 

explain these differences, predict 

patient's responses to treatment, 

and help to develop precise and 

personalised medicine. These tests 

are becoming cheaper, quicker, and 

more portable too. 

Portable Digital Health 

New digital technologies allow 

people to track and analyse their 

own everyday health data through 

wearables and smartphone apps. This 

and other health knowledge can be 

shared with others, or used to make 

lifestyle changes. 

Digital Public Spaces 

Patients demand transparency 

regarding their health records, and turn 

to the internet for advice and support 

from peers. Patient organisations act 

as spaces of innovation and move from 

passive provider of data or fundraiser to 

being actively engaged in the process of 

producing and circulating knowledge. 

Online crowdfunding is used to finance 

clinical trials for rare diseases, and we 

have seen the gamification of treatments 

and healthy choices through apps. 

More Than Medicine 

The importance of healthy lifestyles has 

been recognised within and without 

the medical profession. Giving people 

the skills, knowledge, and confidence 

to improve their health and well-being, 

and emotional and practical support 

to live well with long-term conditions 

has become more important. There is a 

reorientation from clinical professionals 

as expert instructors to partners 

and collaborators. 

To summarise, digital technology 

is becoming increasingly important, 

and this goes hand in hand with 

social innovation and new attitudes, 

needs, and behaviours. Financial 

aspect however, are also more 

and more important, and much of 

this is happening outside of public 

healthcare, in a more private and 

commercial setting. 

Many questions remain 

unanswered, especially in the 

area of consent, privacy, and 

sharing data. As well as around 

the ethics of funding new and 

innovative research, drugs, and 

treatments within a system that 

includes both public health 

and a capitalist market. It is also 

worth taking a critical view on 

the usefulness of more and more 

data gathering, and whether we 

really are producing new kinds of 

knowledge and using it differently 

from before. The role of the 

patient in all of this is becoming 

increasingly blurred and 

contested from all sides of the 

healthcare system, including 

patients themselves. 

53 

54

People 

with CF 

55 

56

Working at 

the Extremes 

The aim of this project is to explore some 

of these questions relating to the future of 

healthcare through the lens of living with 

CF. The complex and life-long treatment 

regime, frequent hospital stays, personal 

involvement in large parts of their own 

care, and new possibilities for precision 

medicine make people with CF extreme 

users of the healthcare system. Thus CF 

is an interesting case to highlight key 

dimensions and to provide deep insights 

(Boyer et al, 2013: 53). 

People 

with 

CF... 

...are usually very involved and 

proactive in their own daily 

care 

...blur and challenge onedimensional 

views of health 

and illness 

...are usually also involved in 

creating knowledge used to 

treat CF 

... work with multidisciplinary 

medical teams to 

manage symptoms 

...cannot meet each other 

in person due to risk of 

cross-infection 

...rely on the internet for 

contact with peers, and there 

is a lively community of 

people with CF supporting 

each other and advocating 

their position 

...are at the cutting 

edge of research with 

new treatments being 

developed and tested, as 

new technologies such 

as gene editing are 

becoming available 

...are at the cutting edge 

of debates and campaigns 

around funding innovative 

drugs with NICE rejecting 

to fund the life-changing 

but extremely expensive 

treatment Orkambi 

57 

58

expertise 

FEELINGS 

KNOWLEDGE 

IDEAS 

TOOLS 

despair 

resilience 

smart phone 

health 

motivation fear apps 

trust 

frustration hope 

success 

experiment 

illness 

confusion 

disability 

doubt 

health 

59 

research 

information 

experience 

data 

advice 

hacks 

internet 

treatments 

online forums 

energy 

support 

time 

lifestyle 

exercise 

diet 

a life 

worth 

living 

money 

treatment 

routines 

pharmacy 

NHS 

HABITS 

RESOURCES 

ORGANISATIONS 

NICE 

(drug approval) 

pharma industry 

CF Trust 

clinic 

team 

employers 

others 

with CF 

workplace 

travel 

PEOPLE 

partners 

family 

friends 

home 

PLACES 

school / 

university 

hospital 

Landscape 

Looking at this system from the 

perspective of someone with CF as 

extreme user, reveals a much larger 

view of what health and illness means. 

It quickly develops into a map of the 

wider landscape someone with CF is 

surrounded by and helps to understand 

deeper impacts. This shows that looking 

at health and care on a macro level and in 

a social context can reveal more insights 

than considering it micro and individual. 

60

Appointment Journey 

When looking at 

the other extreme 

and zooming in, it 

becomes clear that 

there are moments 

of intensity within 

this landscape - for 

example a hospital 

check-up. And yet 

they leave little 

space and time to 

make sense of and 

discuss the bigger 

picture. What do 

these test results 

mean for my job, 

my family, my life 

from now on? Do 

I need to put more 

work into getting 

better or arrange 

myself with the new 

situation? What if I 

feel different from 

what the tests 

suggest? When 

will I die? 

61 

taking 

time off 

preparing 

journey 

to hospital 

speaking to employer 

arranging a day off 

thinking about questions 

preparing notes 

worrying about 

upcoming test results 

waiting 

room 

remembering results 

and comparing to last time 

thinking about 

missed treatments 

called in 

by nurse 

assigned 

room 

see nutritionist 

different 

psychologist 

specialists 

tests 

repeating your 

story to everyone 

trying to sound optimistic 

wait 

told to 

work harder 

pharmacist 

physiotherapist 

feeling blamed 

googling 

new diagnoses 

in real time 

live feed to mum 

and best friend 

most important 

person and least time 

peaking at 

your medical files 

see doctor 

talking while 

giving blood 

more 

tests 

decisions 

decisions about 

further treatment 

trying to understand 

the bigger picture 

resolutions 

and promises 

journey 

home 

tired and hungry 

leaving 

hospital 

wondering what it all means 

for life in the next weeks / years 

looking for 

opinions online 

back 

home 

incorporating changing 

treatments into daily routine 

experimenting 

with different 

treatments 

62

A total of 85 people 

completed the 

questionnaire. There were 

more females among the 

respondents than males 

(61.2% versus 38.8%). 

Respondents ranged in 

age from 16 to 65 and the 

median age was 30. The 

majority of respondents 

(73%) were aged 20-40. 

71% of individuals had 

sought information on their 

life expectancy from sources 

other than their doctor/CF 

care team. Over 25% of 

respondents had sought 

information on their life 

expectancy from each of 

the following sources: 

“Reports from the Cystic 

Fibrosis Trust/the Cystic 

Fibrosis Trust website” (41%), 

“Research literature” (39%), 

“Patient websites/forums” 

(29%), “Other internet 

sites” (26%). 

25% of individuals said that their 

doctor/CF care team had provided 

them with information on their life 

expectancy as part of their routine 

care, while 66% had not been 

provided with such information and 

9% were not sure. 

27% of individuals had actively 

sought information on life 

expectancy from their doctor/CF 

care team and 74% of those had 

actually received some information. 

73% of respondents reported that 

they would like to receive more 

personalised information about 

their life expectancy. Of these, 40% 

would prefer to receive this 

information only from their 

doctor/CF care team, 32% would 

prefer to receive it only by 

themselves, for example via an 

online tool, and 27.4% would like to 

receive such information 

both/either from their doctor and 

by themselves. 


In fact, many people with CF 

would like to know more about 

their life expectancy. To illustrate 

this, Dr Ruth Keogh, Associate 

Professor at the London School 

of Hygiene and Tropical Medicine, 

has kindly allowed me to include 

a preview selection of her results 

from a survey to understand what 

people with CF would like to learn 

about their life expectancy and 

other outcomes. 

Knowing about life expectancy 

can be a useful resource in the 

pursuit of a life well lived, and 

there are more and more options 

to arrive at reliable estimates. Yet 

these more human questions 

often remain difficult to discuss 

with doctors and within the 

healthcare system with its focus 

on diagnosis and treatment. 

(for more information see appendix p. 28 or http://blogs.lshtm.ac.uk/ruthkeogh/ 

cf-online-questionnaire/ for details of the questions and upcoming results) 

63 

64

Living With CF 

birth 

hospital stays 

and regular 

checkups 

early years 

early health problems 

and diagnosis 

everyday treatments: 

pills, nebulisers, exercise, 

physiotherapy, diet... 

rebellion 

non-adherence 

puberty 

first partner 

taking over care 

from parents 

education and 

career choices 

delayed puberty, 

scars and skinniness, 

telling your partner or friends about CF, 

more awareness of shortened 

lifespan and implications 

20th birthday 

moving out? 

having 

children? 

challenging what is possible for someone with CF, 

wondering what is possible for someone with CF 

getting 

married? 

oxygen therapy? 

lung transplant? new treatments? 

end of life? 

Life 

Journey 

It is however these questions that 

matter when it comes to managing 

a whole life with CF as this example 

of a life journey illustrates. Ill health, 

early death, extensive treatment 

regimes, and frequent hospital 

stays quickly become part of all 

important decisions. With time, life 

turns into an ever bigger question 

mark, and into a negotiation with 

your body and the institutions 

looking after it. It might be difficult 

to discuss this with anyone without 

breaking taboos, or causing fear 

and worry to loved ones. Making 

decisions and thinking about the 

future can thus be characterised by 

loneliness and uncertainty. And yet, 

there is plenty of creativity, courage, 

resilience, and resourcefulness to 

be encountered in lives with CF. 

65 

66

The CF 

community 

online 

People with CF increasingly connect 

to each other and the ‘CF community’ 

has changed and developed 

considerably over the last years. 

Increasing life expectancy, and the 

advent of the internet and social 

media - where people can connect 

without meeting physically and risk 

cross-infection - have created new 

options for peer support within an 

adult patient community. Digital 

ethnography can reveal glimpses 

of this online world, and this is an 

impression of how people make 

sense of their lives with CF in the 

digital public space. 

This online space is mobilising 

an adult patient community who 

increasingly use their experience 

and clinical knowledge to make 

themselves part of the networks 

of experts dealing with CF. Patient 

organisations like the CF Trust 

increasingly move from fundraiser 

and passive provider of data to 

becoming engaged in the process 

of producing and circulating 

knowledge that is critical to 

people with CF. 

These developments are not 

without conflict, resistance, and 

limitations, but overall patient 

organisations often innovate 

the relations between citizens 

and research, public health, and 

industry. They work within these 

systems to imagine new appraisals 

of their causes and conditions 

and this constitutes a new form of 

citizenship based on the collective 

production of knowledge. 

(For examples, quotes, and summaries from exploring the digital spaces around CF 

see appendix p. 34) 

67 

68

Close-Up 

To explore in more detail how digital and non-digital 

interactions between people with CF might look 

like today, and what difference they make within a 

life journey, I interviewed Oli Rayner who lives with 

CF. This is of course only one case, but it provides a 

close-up view of the issues mentioned above. 

It shows that being in touch with others with CF is a 

complex issue and has both upsides and downsides. 

It can be extremely upsetting, especially when it 

has been mediated through media with its own 

interests in portraying people a certain way. Recent 

developments have meant a more inspiring, positive 

impact is possible with longer and fuller lives, more 

direct connections, and continuously changing 

possibilities. Still the balancing act of living with 

CF but not letting it take over life completely, also 

applies to connecting to others with CF. 

(for full transcript see appendix p. 30) 

69 

70

Design Response 

71 

72

What if...? 

What if connections 

between people 

with CF became an 

important resource 

for understanding, 

inspiration, and 

support? And help 

people with CF 

to help others, to 

make a valuable 

contribution to 

someone else's 

life, and to leave 

a legacy. 

What if 

spontaneous 

and one-off 

connections could 

complement 

personal 

relationships so 

that editing and 

sugar-coating how 

you feel to not 

upset loved ones 

does not become 

overbearing? 

Collecting more 

health data can be 

useful. But how 

might this data 

be used to create 

knowledge, or even 

meaning? What if 

it could help us to 

live adventurously 

and remarkably? 

What if it could 

help us accept 

uncertainty, but 

encourage us to 

make decisions 

reflecting hope 

not fear? 

Medical and 

pharmaceutical 

improvements 

are essential to 

CF care, but there 

are a number of 

questions they 

cannot answer. How 

might we instead 

acknowledge, 

encourage, and 

make use of the 

resourcefulness, 

resilience, courage, 

and creativity 

people with CF live 

their lives with? 

73 

74

A Possible 

Response 

COMPASS 

A WAYFINDING APP 

Compass - An app for wayfinding. 

This app will let people with CF get 

in touch with others who live with 

similar health challenges. A phone 

call provides a direct, personal, but 

non-committal way of contact. 

It also lets people explore logs of 

other people’s journeys with CF and 

beyond. And reflect on and log their 

own journey. 

Compass bridges the gap between 

medical and measurable data, 

patient activism, and research - 

and the more human layer of 

well-being, sensemaking and 

wayfinding through storytelling 

and personal contact. 

1 

2 

3 

4 

Share (some of) your 

data with Compass, 

You can also add 

a question. 

Based on this, Compass 

will point you to others 

who had or are having 

a similar experience, 

challenge, or question, 

or live their lives in a 

body similar to yours. 

It will offer you the 

possibility to start a 

phone call with this 

person. It is spontaneous 

and what you make of it, 

no strings attached. 

5 

6 

You can also view a 

mapped trajectory 

of this person's life, 

a brief log of events, 

experiences, ideas. 

If you would like to, you 

can register your phone 

number with Compass 

to also be available for 

calls. To share (some of) 

your health data. And to 

log your own journey. 

1 

2 

4 

5 

6 

3 

75 

76

COMPASS 

A WAYFINDING APP 

COMPASS 

A WAY FINDING APP 

ASK A QUESTION 

OR TYPE AN ISSUE 

CONNECT OR 

I want to become a mother 

ADD HEALTH DATA 

CALLING 

ELENA 

THIS IS 

SOMEONE 

SIMILAR 

Genetic Profile 

Lung Function 

Call 

View Trajectory 

COMPASS 

EXPLORE 

Weight 

Mood 

HANG UP 

Add or 

connect 

health data 

Ask a 

question 

Find 

someone 

similar 

View and 

add to 

your log 

Register as 

taking calls 

COMPASS 

Connect 

to FitBit 

Connect to 

CF Trust Registry 

COMPASS 

COMPASS 

COMPASS 

77 

78

gave 

birth 

EXPLORE 

TRAJECTORY 

very 

tired 

HELENA’S JOURNEY 

FEV1 

up! 

trans 

plant 

hope 

LOG YOUR 

OWN JOURNEY 

YOUR JOURNEY 

add add add 

REGISTER TO 

RECEIVE CALLS 

Ute 

CONFIRM 

What data should be 

revealed to whom? 

What does / did it mean 

for daily life, and for 

the bigger questions? 

What is a life well 

lived? What is possible? 

What is important? 

More 

Questions 

Compass does not intend to 

provide answers, but show possible 

trajectories, challenge what might 

be seen as inevitable or impossible, 

and open up discussions. 

This applies to living with CF, 

as well as to broader issues of 

sharing medical data, of how 

health knowledge is defined and 

controlled, and what it means for 

quality of life. 

COMPASS 

COMPASS 

COMPASS 

What gets me through? 

What keeps me happy? 

What difference did 

something make? 

These are some of the questions 

people with CF might ask when 

using the Compass app. 

79 

80

Testing and Reflection 

To prototype and test this design 

concept, I e-mailed a blogger who 

also lives with CF and is around the 

same age as me. I briefly outlined 

the idea, and pointed out that 

there is a question close both of 

us seem to ponder frequently in 

relation to CF: What about doing 

a PhD? I knew this from her blog 

posts, and we arranged a phone 

call. The phone call lasted 

11 minutes and 32 seconds. I asked 

her to e-mail me her thoughts after: 

81 

"The first thing 

I noticed is that 

you make the 

same noise midsentence, 

the 

one when you 

take a strategic 

breathing 

pause and clear 

your throat of 

annoying mucus. I 

didn't know other 

people did this! It 

was such a strange 

experience 

recognising this, 

like hearing a 

lost sibling." 

"I felt free. I 

didn't have 

to hide or be 

overly positive, 

and I could 

just mention 

potentially 

dying young. 

In fact, I didn't 

really have to 

mention it or 

spill it out, we 

both know. It 

was a relief to 

talk like this." 

"We came up with 

some new points 

I hadn't thought 

of before. But the 

main thing I loved 

was that actually 

we didn't talk all 

that long about if 

it is possible, we 

quickly moved 

over to HOW it 

could be done. 

And wondering 

who might have 

done it, and what 

their health 

was like." 

"I was less worried 

you might laugh 

at my ideas or 

just make that 

worried face and 

tell me it will not 

be good for my 

health. My doctors' 

and family's 

opinion is really 

important to me, 

but sometimes you 

just need someone 

to understand that 

there are other 

things you need 

to be happy not 

only healthy." 

Of course this is at best an 

approximation of the concept 

described above, but I was excited 

to test it and curious about my own 

and my phone partner's experience 

and reaction. And it was very 

positive, for both of us. It would be 

interesting how this concept could 

integrate with new developments 

like the CF Trust Registry (appendix 

p. 18), or their initiatives around 

digital health. Given more time, it 

would be interesting to find out if 

Compass connected people with 

similar life expectancy estimates, 

as well as to hear how other parts 

of the healthcare system relate 

to this idea. And how the idea 

behind Compass could apply to 

wider healthcare contexts where 

relationships are changing, and 

where data is playing an increasing 

role, to add a layer of meaning, 

sensemaking, and wayfinding. 

82

Appendix 

This includes references to other 

people’s work that shaped this 

project, as well as some of the data 

I collected during my own research 

in more detail. 

83 

84

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Image Credit 

IAN PETTIGREW 

http://www.ianpettigrew.com/ 

Photographer Ian Pettigrew - who has CF himself - took 

portraits of women with CF for his book Salty Girls. It 

turned into an incredibly inspiring and powerful project 

that has made a huge difference to how I see myself 

as a person with CF and enjoyed worldwide attention. 

Ian generously allowed me to use his photos within my 

work. I am very grateful to him and the salty girls Bailey 

(Book 1, p. 16), Erin (Book 1, p. 19), and Amy (Book 1, p. 33). 

Salty Girls 

Imagine what it is like growing up as a woman 

in today’s society, where the media demands 

perfection, and where body-shaming has become 

all too prevalent. It is a constant struggle to maintain 

the concept of ‘beauty’. In this book the Salty Girls 

challenge this norm, and strive to put an end to body 

shaming. They embrace their body’s scars and all, 

to inspire women everywhere to do the same. These 

women truly are the epitome of remarkable strength, 

enormous resilience, and unique beauty both inside 

and out. Not only is this book about raising awareness 

for Cystic Fibrosis, but it can truly reach all females 

who have ever felt this way. 

89 

90

Expert 

Interview 

Summaries 

91 

92

93 

94

Case Study 

Summaries 

European 

CF Society 

ecfs.eu 

CF Research News - Medical 

papers in plain language 

CF Research News publishes plain 

language versions of scientific work 

from the Journal of Cystic Fibrosis in 

pdf format. They aim to bridge the 

gap between people with CF and 

the researchers investigating CF and 

how best to treat those with the 

condition. They hope to reach 

patients, parents, relatives, friends, 

and caregivers. 

Nesta 

nesta.org.uk 

Computer games that heal you 

Imagine if you could play a computer 

game that healed you as you played. 

Sounds far-fetched? Computer 

game therapy is a growing field that 

is still finding its feet. But my 

prediction is that 2016 will be the 

year that doctors start prescribing 

games to patients. 

Post Biotics 

post-biotics.com 

Post / Biotics Toolkit - What if 

the next antibiotic is in 

your backyard? 

A new toolkit called Post/Biotics is 

designed to let citizen scientists 

—including elementary school 

students—help in the process of 

discovering those new drugs. It 

includes a small pop-up lab that 

anyone can use to test samples and 

then send results, along with a photo 

and GPS location, to an online 

database. Citizen scientists test their 

samples against non-pathogenic 

bacteria strains provided with 

the toolkit. 

Mia Cinelli 

miacinelli.com/The-Weight 

Mia Cinelli’s limb like 

weighted blanket is designed 

to ease feelings of grief 

Following the death of a loved one, 

American artist and designer Mia 

Cinelli created this ‘weighted 

comfort object’ that could simulate 

the feeling of being hugged. 

95 

96

NHS & Scottish Opera 

breathcycle.com 

Breath Cycle - Singing and 


Scottish Opera and Gartnavel 

General Hospital Cystic Fibrosis 

Service have been working 

together since early 2013 to 

explore whether learning 

classical singing techniques, 

including breath control, can 

improve the wellbeing of cystic 

fibrosis patients. Due to the high risk of infection for those with 

cystic fibrosis, the project also explored how patients might 

interact safely with each other, using the internet as a means 

of meeting, learning and building new communities. 

Quantified Self 

quantifiedself.com 

Quanitified Self 

- self knowledge 

through numbers 

A movement consisting of 

user communities of 

self-tracking tools. They 

aim to build a culture of 

access to one’s own 

personal data and of 

exploring the benefits of 

shared self-collected 

data to solve complex 

health challenges. 

E-Patients 

e-patients.net 

E-Patients - because health 

professionals can’t do it alone 

A movement advocating and 

facilitating participatory medicine. 

This is a model of cooperative health 

care that seeks to achieve active 

involvement by patients, 

professionals, caregivers, and others 

across the continuum of care on all 

issues related to an individual's 

health. Participatory medicine is an 

ethical approach to care that also 

holds promise to improve outcomes, 

reduce medical errors, increase 

patient satisfaction and improve the 

cost of care. 

CF Unite 

cfunite.org 

Cystic Fibrosis Priority 

Setting Partnership 

In CF care there are many situations 

where we do not know which 

treatment is best. Over 300 

important research questions are 

currently unanswered. Presently 

researchers choose their projects 

because they are fashionable, of 

personal interest or of interest to 

funders including the 

pharmaceutical industry. The 

priorities of patients, carers and 

clinicians are often overlooked. By 

involving in producing a priority list 

of uncertainties important to them, 

this projects aims to change this. 

The Blazer Experiment - 

On how police uniforms 

represent their relations 

with the community 

In 1968, the police department 

in Menlo Park, California 

decided to reform the 

department. Its chief wanted 

to rebuild trust with the 

community — and one of the 

most ground-breaking and 

controversial changes was the 

new blazer-style uniform he 

implemented. It tried to 

change how police are seen 

and see themselves. But can a 

new uniform really change the 

culture of a whole police 

department? 

Menlo Park Police department 

99percentinvisible.org/episode/the-blazer-experiment/ 

US National Insitutes of Health NIH 

medstarhealth.org 

‘Making Health’ - a celebration of 

how tinkering, technology, and 

design tools are transforming 

healthcare 

An event bringing together clinicians, 

scientists, inventors, and makers to 

explore how do-it-yourself, design 

tools, and technology can quickly 

transform ideas to working 

prototypes and innovate healthcare. 

Open APS 

openaps.org 

Do it yourself pancreas 

- we are not waiting 

Using a raspberry pi and publishing 

the DIY blueprints, Dana Lewis has 

built her own artificial pancreas 

system. Tapping into the potential of 

patient innovators and independent 

researchers, she started a movement 

of DIY pancreas builder who refuse to 

wait until similar technology has been 

FDA approved and commercialized 

through traditional processes. They 

often mean expensive solutions that 

do not take the dignity of the patient 

into account. 

Swedish Tourist Association 

theswedishnumber.com 

The Swedish Number - 

get connected to a 

random Swede and 

talk about anything 

An initiative by the 

Swedish Tourist 

Association, this project 

encourages people to 

find out more about 

Sweden in a playful and 

personal way. With a total 

of 187632 incoming calls 

in the 79 days it was open 

for, it has proved to 

successfully tap into 

people’s curiosity. 

97 

98

A selection of results from the “Online survey to gain 

understanding of what people with cystic 

fibrosis aged 16+ would like to learn about their life 

expectancy and other outcomes” 

99 


DR RUTH KEOGH 

http://blogs.lshtm.ac.uk/ruthkeogh/ 

Dr Ruth Keogh - researcher at the London School of 

Hygiene and Tropical Medicine - is doing very interesting 

research to understand what people with CF would like 

learn about their life expectancy, how they would like to 

do so, and how things are at the moment. 

It was very encouraging to find out about a thought 

provoking and considered project dealing with the more 

social but just as challenging side of life with CF. Dr Keogh 

kindly provided me with a preview of the results from her 

survey (Book 1, p. 38), and details of the questions and 

upcoming results can be found here: 

http://blogs.lshtm.ac.uk/ruthkeogh/cf-onlinequestionnaire/ 

A total of 85 people completed the questionnaire. There 

were more females among the respondents than males 

(61.2% versus 38.8%). Respondents ranged in age from 

16 to 65 and the median age was 30. The majority of 

respondents (73%) were aged 20-40. 

25% of individuals said that their doctor/CF care team had 

provided them with information on their life expectancy as 

part of their routine care, while 66% had not been provided 

with such information and 9% were not sure. 

27% of individuals had actively sought information on life 

expectancy from their doctor/CF care team and 74% of 

those had actually received some information. 

71% of individuals had sought information on their life 

expectancy from sources other than their doctor/CF care 

team. Over 25% of respondents had sought information on 

their life expectancy from each of the following sources: 

“Reports from the Cystic Fibrosis Trust/the Cystic Fibrosis 

Trust website” (41%), “Research literature” (39%), “Patient 

websites/forums” (29%), “Other internet sites” (26%). 

73% of respondents reported that they would like to 

receive more personalised information about their 

life expectancy. Of these, 40% would prefer to receive 

this information only from their doctor/CF care team, 

32% would prefer to receive it only by themselves, for 

example via an online tool, and 27.4% would like to receive 

such information both/either from their doctor and by 

themselves. 

100

Interview with 

Oli Rayner who 

lives with CF 

Are you regularly in touch with other people with CF, 

and if yes, how? (E-mail, messages, phone calls, in 

person...) 

I was born in 1975 and so when I was growing up 

we did not have the internet, social media, skype or 

mobile phones. I only started using email when I got to 

university in 2004. Even when new technology came 

along I avoided talking to other people with CF outside 

the hospital environment because all the people with 

CF I’d got to know when I was younger (whom I had met 

at hospital when less was known about cross-infection 

and segregation was not so strict) had passed away and 

I found it extremely upsetting. Also, the only time I saw 

anyone else with CF was either when they were sick 

in hospital or when there was some media coverage 

of a very poorly child with CF who was desperate for 

a transplant or access to some service/medication. 

I thought any contact with others with CF would just 

depress me. In the last 5 years or so, I think things have 

changed enormously. People with CF are living longer 

and fuller lives. Social media has made it easy to get 

to know lots of other people with CF of all ages and all 

101 

backgrounds and see people doing really well at things 

as well as not so well. It is not all bad news now. I am 

now in regular contact with others with CF and I use 

different media for different purposes. Typically, I would 

probably “meet” new people with CF through social 

media and then, having developed a level of trust and 

mutual interest, I would also use email, telephone, text, 

WhatsApp and Skype-like tools. 

If yes, why do you keep in touch and what difference 

does this make to you? If no, why not, or what holds you 

back? 

I talk to others with CF because it helps me to understand 

my disease and what it means. I suppose I am always 

trying to figure out “what is the CF” and “what is me”! I 

also like to try to help other people with CF (and young 

parents of children of CF) where I have some experience 

or perspective that might be relevant to them. It is always 

good to share problems to see if it is a more general 

issue that we can solve together or, indeed, find out if 

someone else has already come up with a solution and 

can share know-how. I also do some patient advocacy 

both independently and with the CF Trust and building 

relationships with others with CF and understanding 

how they feel about things is really important because 

CF affects different people in different ways and it is 

important to know what really matters to peers and 

whether views are representative or more subjective. If I 

am in a meeting or at an event (and I am the only person 

with CF able to be there due to cross-infection) I often 

feel a heavy responsibility to represent a wider point of 

view rather than just my own. 

I suppose I do hold myself back a bit because I don’t 

want CF stuff to dominate my life too much and I suppose 

I am still reluctant to get to know anyone with CF too well 

because of my earlier experience of CF friends passing 

away. 

Do you have any 'CF idols' - people with CF you know 

about and you look up to? What does this mean to you? 

I never used to know anyone with CF who was doing well 

when I was younger. In the last 5 years I have become 

aware of several pwCF who are doing really well and I 

do admire what they do. I would not call them idols but 

sometimes they do inspire and reassure me. Seeing 

people with CF do well makes me feel stronger. I also get 

a lot of pleasure from seeing others with CF doing well 

in life because it seems to signify progress and I love the 

idea of progress! I won’t name names but some of them 

have become friends. Some of them are professional 

sports people, fitness gurus or champion bodybuilders 

which is fun to see but the ones I really admire are those 

who have built a life for themselves and managed to 

integrate a career, family and taking care of their health. 

I think those people are the most impressive. I hate to 

think kids with CF see the bodybuilder types and are left 

with the impression that they can do well with CF but only 

if they become a bodybuilder. I hope one day kids with 

CF can look around and see that CF is compatible with 

normal life as long as they are sensible and prepared to 

work a bit harder that others. 

How do you make or have you made decisions 

concerning your future? Do you consult doctors / 

friends / other people with CF / ... when you think 

about what is possible when living with CF? 

I have never really thought about what is possible living 

with CF. When I was born my parents were told I would 

not make it to 10. When I was 10, we were told I would 

not make to 16. When I was 16, my CF consultant told 

me I would be lucky to get to 25 and that I would need a 

heart and lung transplant by 21. Based on this, the pace 

of medical progress and my experience of how different 

people are affected differently, I don’t think anyone can 

say with any confidence what life with CF will be like. I 

have always just tried to understand what I can do and 

what I cannot do and I use that to plan what I will do. 

When my capabilities change, I try to figure out whether 

it is a new normal or just a bad patch and, if necessary, 

I change my plans. I have had to adapt my life/work 

several times over the years, especially since CF started 

to affect me much more from my early 30s. I talk to my 

CF team, family and close friends. I had some useful 

discussions with tutors at Uni. I have also had some very 

useful conversations and advice from work colleagues 

over the years – I have always been very open with 

employers about my CF. I don’t talk to others with CF very 

much about persona decisions/plans because none of 

them know me well enough. 

102

Impressions 

from Digital 

Ethnography 

103 

104

“However, it is difficult to be an adult - to be married, to 

work, to better myself, and to plan for the future - all 

while managing a complex and time-consuming chronic 

disease with no guarantees. I fail more than I succeed, 

but I plan to enjoy every single day I wake up with breath.” 

"Even if you are 

in pain, often 

the physical pain 

is less than the 

psychological 

pain and fear 

that comes 

with dreading 

what the future 

might bring." 

“The photo reminds me of a 

lesson I need to be mindful of 

every single day. That lesson is 

the notion that we can plan or 

dream of the way we want our 

lives, our time, or our energy to be 

spent, but in reality sometimes, 

our ideas will never come to 

fruition despite our efforts.” 

105 

"You are not 

completely healthy 

at this point on 

the horizontal axis 

of time. Yes, your 

body has weird and 

unusual chloride 

channels lining its 

epithelium. But is 

your brain 'sick'? Is 

your heart 'sick'? Are 

our bones intact? 

Can you see? Are 

you breathing? Can 

you love?" 

"The CF Trust is 

focused on getting 

the magic pill, but 

in the process, 

has it neglected 

and ignored what 

we would call the 

rest of our 'quality 

of life'". 

"But life is not all about the 

numbers of tomorrows... it is 

also important to think about 

the quality of those tomorrows. 

If I can't spend my 'tomorrows' 

deciding for myself how to live, 

then what is the point exactly?" 

“Acting as my own head 

nurse, I decide when to 

hook-up, what to eat, 

where I can and cannot 

go, and who to see. I 

govern the controllable 

that inpatient care can 

unfortunately strip away 

from its guests.” 

“I have learned over 

the years to go into 

appointments with 

little expectation, that 

way I am able to focus 

on the positives of 

a bad appointment 

or celebrate the 

victories of a good 

appointment without 

feeling weighed down.” 

"Do I like taking a bazillion 

drugs? No. Do I like poking 

myself with little needles? 

Um, no. Do I fight fatigue? All 

the time. Do I always feel like I 

am forgetting something? You 

betcha. There are definitely 

moments where I want to 

throw my hands up, cry, and 

give up. It's exhausting to do 

this everyday. It is even more 

exhausting to do this and act 

like I am normal. Breaks do 

not exist and CF never packs a 

suitcase to go on vacation. I ask 

the Lord each day to help me 

find joy in those moments and 

thank him for 

the ability to live 

a remarkable life 

in the midst of a 

failing body. 

He grants it." 

"It is in these moments that 

I realize how little control I 

have in my own body. How I 

spend my days strategizing 

and how some days that 

perfect strategy doesn't 

even come close to fruition. 

It is discouraging. I want to 

keep up with my husband 

and prove that I am fine, that 

CF plays such a small role 

physically that I am able to 

push on. In reality, this is far 

from the truth and my supply 

of oomph empties long 

before the project is finished 

usually." 

“I adapted to dying, and 

adapted well. I had after 

all, spent my entire life 

adapting to every possible 

circumstance where most 

were out of my control.” 

"Our lives 

will always 

be slightly 

different than 

our peers in 

similar stages 

of life. Our 

priorities and 

goals have to 

be focused 

and planned 

in an effort to 

experience it all 

despite CF, and 

sometimes, our 

goals will be 

rewritten." 

"Sometimes I open the drawer with my daily medications and 

just stare at it. I can feel my body wanting to shut the drawer, 

erase the responsibility from my mind, and walk away to 

pursue something else spontaneously, instead of doing 

another round of therapy or choking down another handful 

of pills. I also know that if I did this and ignored my schedule, 

I wouldn't live. Weeks filled with schedules, lists, and mental 

alarms are a matter of life and death for me. So, I comply, 

sometimes begrudgingly and with an ungrateful heart." 

106

"Parker J. 

Palmer wrote 

that, 'The 

human soul 

doesn't want to 

be advised or 

fixed or saved. 

It simply wants 

to be witnessed 

- to be seen, 

heard and 

companioned 

exactly as it is.'" 

"As a young girl, 

I was acutely aware 

of the difference 

between being 

treated as a 

patient and being 

treated as a 

human being. I had 

always wanted 

to be treated as 

a person who 

had something 

to contribute to 

society, not just as 

a disease. When 

you're a body in a 

bed, your sense 

of identity is often 

stripped so far 

back that you 

don't recognise 

yourself." 

"I knew it was time. It was time to take the next 

step in my care and that meant a portacath. The 

idea of having a port always weakened my soul 

and I was disappointed in myself. A port meant my 

body would be altered on the outside and I would 

physically look irregular. It meant I was really sick 

and my disease was in fact progressing. It meant 

I lost control and the force I battled to hold off 

everyday was gaining ground. It meant CF was 

winning and I was ultimately losing. Ports were 

for very sick cancer patients, certainly not for me." 

107 

"Salty Girls has 

played a big part 

in this change. In 

April, I posed for a 

photo book about 

women fighting 

CF and the many 

challenges we 

face physically, 

mentally, and 

emotionally. It 

was my first time 

directly meeting 

other women with 

CF and knowing 

that we had similar 

scars, schedules, 

thoughts, fears, 

and never ending 

coughs. After 

the shoot, I got 

in the car with 

my husband; my 

heart felt full and 

I smiled, 

‘They all 

coughed 

like me.' It 

sounds silly 

now, but 

that brief 

sense of 

community 

has changed 

me forever." 

"'Sorry we haven't been able to get you lungs. i'm sorry 

we can't save you.' I knew he had done his best and I 

appreciated his candour - something that had been so 

sorely lacking with the team who were looking after me 

at the hospital. That he had shared his humanness with 

me, as opposed to just being my doctor, meant a lot." 

I planned my 

funeral. Not a 

common thing for a 

21-year old to do, but 

it had been rolling 

around my head since 

I was a little girl. 

For me, getting that 

out of the way so I 

could focus on living 

was essential in 

getting on with life 

while I still had it." 

"The people who 

did talk about dying 

and death were my 

nurses. There was 

this no BS thing 

between us, and 

I could talk and 

make inappropriate 

jokes about my own 

death to my hearts' 

content. But no one 

ever came to talk 

to me about dying, 

and for me that 

was disappointing 

because what was 

unfolding was really 

quite remarkable. 

And so it was 

something I had to 

do on my own. 

"The people who did talk about dying and death were my 

nurses. There was this no BS thing between us, and I could 

talk and make inappropriate jokes about my own death to 

my hearts' content. But no one ever came to talk to me about 

dying, and for me that was disappointing because what 

was unfolding was really quite remarkable. And so it was 

something I had to do on my own. I planned my funeral. 

"I believe I have 

used optimism to 

shield people I care 

about (including 

myself) from the 

reality and pain 

of CF. Because of 

this, the majority 

of the people I 

surround myself 

with have little 

understanding of 

what having CF 

actually looks like. 

They see the sugarcoated, 

sunny 

explanation that I 

allow them to see, 

but not the dark, 

isolating side." 

“When 

you have 

CF, you 

grow up 

dying." 

108


Design Innovation and Citizenship 

2015 / 2016

Salty Lives - Unravelling Healthcare Through the Lens of Cystic Fibrosis

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