THE VIRTUAL DONATION CHALLENGE How might we increase the understanding of each other’s wishes on organ donation?

Erik Rydell

Master Programme in Interaction Design at Umeå Institute of Design Mentor representing the Interaction Design field: Kent Lindbergh, Interactive Institute in Umeå

External mentor: Bengt- Åke Henriksson, Sahlgrenska University Hospital in Gothenburg

Examiners: Niklas Andersson Programme Director and Lecturer, Stina Jonsson, Senior Interaction Designer and Mike Stott, Pro- fessor of Interaction Design.

THE VIRTUAL DONATION CHALLENGE

How might we increase the understanding of each other’s wishes on organ donation?

Credits: Bengt- Åke Henriksson | Peter Desatnik | Anders Rydvall | Kent Lindbergh | Niklas Andersson | Stina Johnsson | Malin Haglund | Pernilla Abrahamsson | “Elin” | “Elin’s” daughter “Sanna” | “Sanna’s” friend Emanuel | “Elin’s” son “Ville” | “Anna” |

Jennifer Sarich - Harvey | Nirvana Soltani | Yangchen Zhang | Priyanka Kodikal | Johan Grönskog | John Vikström | Tara Mullaney | the staff at Umeå Institute of

Design | Kalavrytinou Roula | Emina Averin | my family and friends

“I WOULD LIKE TO DEDICATE THIS REPORT TO ALL HELPFUL PEOPLE I’VE MET DURING THIS PROJECT AND ALL ENGAGING PEOPLE WHO ARE TRYING TO

SPARK DEBATE WITHIN THE ORGAN DONATION FIELD”

ERIK RYDELL

Credits: Bengt- Åke Henriksson | Peter Desatnik | Anders Rydvall | Kent Lindbergh | Niklas Andersson | Stina Johnsson | Malin Haglund | Pernilla Abrahamsson | “Elin” | “Elin’s” daughter “Sanna” | “Sanna’s” friend Emanuel | “Elin’s” son “Ville” | “Anna” |

Jennifer Sarich - Harvey | Nirvana Soltani | Yangchen Zhang | Priyanka Kodikal | Johan Grönskog | John Vikström | Tara Mullaney | the staff at Umeå Institute of

Design | Kalavrytinou Roula | Emina Averin | my family and friends

ABSTRACT

Fifty percent of the Swedish population is not aware of their relatives’ wishes on organ donation. It happens that some family members use their veto when they are asked to confirm their dead family member’s wish on organ donation and thereby preventing a potential transplant. If more people would be aware of this issue and tell each other what their standpoint is, we could help the health care to identify more organ donors and thus help more people to a better life. The project lead to an educational and physical exercise based application for tablets aimed for sixteen years old pupils where they by walking around in the physical space, learn about the organs and get physical exercise at the same time. The app is meant for schools since the school has the responsible to educate the pupils about different types of physical exercise and lifestyle. Moreover, tablets are becoming increasingly common in the schools.

I was influenced by an application called Zombies Run that focuses on creating a story by collecting virtual supplies while being running outside. Some statements from the research influenced me. A lady stated that she used to take her daugh- ter out to walk the dog as much as possible because her daughter was at risk of becoming overweight. A Donor Coordinating Doctor stated a thoughtful sentence during a workshop “Would you be willing to receive an organ if you needed a transplant? Donate your organs after death so it is possible”

The Virtual Donation Challenge is an application aimed at sixteen year old pupils for educational purposes. The school is responsible for giving the students educa- tion about lifestyles, different types of exercises and CPR education, I found it most appropriate to link the application to the Physical Education subject or even Natural Science subject. The application is a quiz and the questions are linked to local GPS coordinates which the users have to visit in order to answer the ques- tions about organ donation and how the interdisciplinary processes in the body work.

TABLE OF CONTENT

CREDITS 2

ABSTRACT 3

TABLE OF CONTENT 4

COLLABORATOR 5

PROBLEM DEFINITION 6

RESEARCH 7

HOW TO DOCUMENT ONE’S WISH 8

Family Awareness 8

Donationsregistret 8

Who can become an organ and tissue donor? 8

Donation Cards 10

Test: to ask for donation cards at pharmacies 10

The Declaration of Istanbul - Curbing Organ Trafficking and transplant tourism 11

What it means with organ trafficking and trans- plantation tourism 11

INTERVIEWS 12

Anna - liver transplanted woman 12

Elin - kidney transplanted woman 13

Peter Desatnik, Donor Coordinating Doctor 14

Mini Workshop / interviews 16

Bengt- Åke Henriksson, Donor Coordinating Doctor 19

THE FUTURE OF ORGAN TRANSPLANTATION 20 Ted Talk - Anthony Atala: Printing a human kidney 20

Successful corneal surgery 20

Meeting with a nurse at the local blood central 21 Det vita arkivet - The White Archive 22

SURVEY 22

INSPIRATION/ BENCHMARKING 25

Sum up from research 27

IDEATION 28

BRAINSTORM- SESSION 29

Early concepts 31

MID- PRESENTATION 33

ITERATION 34

How a hospital campaign can look like 34

Bridge the “Gap” 35

Doctor’s game for Children 35

An Idea of Temporary Tattoos 36

Walkthrough of the Temporary Tattoo concept with three people 37

FIVE WEEKS BEFORE PRESENTATION 38

CHECK UP MEETINGS 39

DEVELOPMENT 42

EDUCATIONAL CONTEXT 43

TECHNOLOGY 43

GRAPHICAL USER INTERFACE 44 EXISTING EDUCATIONAL APPS FOR CHILDREN 44 SCENARIO AND WIREFRAMES 44 Walkthrough of the wireframes with the Donor Coordin- ating Doctor, Anders Rydvall 64

THREE GRAPHICAL STYLES 65 FINAL DESIGN 67

SERVICE JOURNEY 68 Screenshots of the final design 68

Site Map 75

EXHIBITION @ SCHOOL 76

REFLECTION 77

REFERENCES 78

LIST OF ABBREVIATIONS 80

APPENDIX 81

COLLABORATOR

I have contacted a number of authorities, organizations and individuals in order to put together a group of experts and experienced people for collaborations and information gathering. After some searching and email correspondence with dif- ferent organizations and authorities. And then, I got in touch with Bengt- Åke Henriksson who works as a Donor Coordinating Doctor at Sahlgrenska University Hospital. Moreover, Bengt- Åke is a scientific advisor for the Swedish Council for Organ and Tissue Donation. Bengt- Åke will with his knowledge assist me as pri- vate person/ mentor in this project. For the financial issue, I applied for a research grant by the organization Scandiatransplant [4].

39%Knows

46%Do not know

15%Uncertain/

do not know

18%Knows

54%Do not know

28%Uncertain/

do not know

4%Knows

44%Do not know

52%Uncertain/

do not know

17%Knows

77%Do not know

6%Uncertain/

do not know

11%Knows

47%Do not know

42%Uncertain/

do not know

HUSBAND/ WIFE/

PARTNER PARENTS GRANDPARENTS CLOSE FRIEND CHILDREN IN ADULT AGE

PROBLEM DEFINITION

Studies shows that eight out of ten Swedes are positive to donate their organs after death [1], nevertheless the number of people who are waiting for a transplanta- tion is increasing [2]. There are not yet possible to grow artificial organs and it is not ethical correct to transplant organs that comes from animals such as pigs or chimps. Therefore the health care is strongly dependent on people from the society who wants to donate their organs after death. A prerequisite to identify a potential organ donor is that a deceased patient has made a standpoint or has relatives who can interpret the dead patient’s desire if the patient’s desire was not made explicit.

See a later chapter for more information how to explicit or document ones desire and also who can become an organ donor. If the family members have to take standpoint due to not knowing the patients desire, they are often likely to use their veto and prevent a donation.

The illustration shows how many people in Sweden that knows their nearest’s desire [3]. The majority of respondents in all groups don’t know how their loved ones want.

In my Master degree project I try to educate the public about the importance of organ donation and offer a platform for people to register their wishes in an acces- sible way.

Compilation of the survey Synovate conducted for the Swedish National Board for Health and Welfare, in 2010. Statistics of how many that are aware of their family members/ close friend’s wishes.

RESEARCH

HOW TO DOCUMENT ONE’S WISH

You can make your desire clear in different ways. It is always the de- sire that is dated the last that is valid, no matter which method that was used.

Family awareness

It is important to make sure that family members and close friends know your desire. It does not have to be a relative, it could also be a close friend ac- cording to the National Board of Health and Welfare. As I mentioned in the introduction, most people are not aware of their relatives wishes. How- ever, 52% of those who know how to make their wishes known have reg- istered themselves according to the opinion poll company Synovate.

Donationsregistret

The image shows the confirmation message I got when I registered my de- sire on the national database for organ donation (http://www.donationsreg- istret.se). A made a film clip from the process which can be seen at my blog [5]. I have also published a flow chart of the online registration process at my blog if you are interested in to see how it works. It is easy to register an indi- viduals wish by using a BankID program on your computer. If you don’t have a BankID program installed on your computer, you can still register.

Then, you need to manually type your name, personal number, and address.

Who can become an organ and tissue donor?

Brain death is an irreversible condition when the brain has no activity but the other organs are intact and have normal blood circulation via ventilator treatment. A per- son is considered dead when all the brain functions irreversible have been omitted [6]. The brain cells are, as all other human cells, dependent of oxygen. The blood transport oxygen from the lungs to the neurons of the brain which needs the oxy- gen in order to work. If the brain get expose by hard violence, the brain swells up.

As a result of that, the blood vessels in the brain will be compressed (because of the scull’s inability to expand) to the point that no oxygenated blood gets through to the brain’s neurons and the brain will stop work. When it comes to cardiac arrest or cessation of breathing, it will still be a question of a death caused of hypoxia because the brain does not get the oxygen it needs in order to work. All organs have in those situations been exposed to hypoxia, and they are therefore not suitable for transplantations.

i

ii

iv vi iii

v vii viii

Patients who are treated in ventilator at the ICU after a brain injury, notes dead after two clinical neurological examinations. The other organs still gets oxygenated blood through sustained ventilator treatment. Not until now, an investigation of whether the patient is appropriate for donation or not can take place. This process have to be made within 24 hours after the declaration of death when it comes to organs. Or- gans has to be transplanted within five minutes after the ventilator has been turned off [7] whereas tissues are not that sensitive, they can be transplanted after a longer period of time. If the patient is declared dead, according to the approach above and the investigation has been made correct, it is up to the responsible doctor to initiate a dialogue together with relatives about the deceased’s attitude or ask a Transplant Coordinator for making a search against the person in the database. Thereafter, a Transplant Coordinator and a transplant surgeon will take decision about which or- gans that are possible to use for transplantation based on individual criteria for each of the organs and finally will receivers for those organs be contacted. This means that a potential donor’s life style doesn’t stop you from signing up as an organ donor.

It is the deceased’s attitude which determine whether a donation can take place or not. Studies have shown that Swedes are most positive among all EU countries to donate both their own organs and their family member’s organs after death (82%). However, the family members are just aware of each other’s wishes in half of the cases. The community have a basic attitude which is that the deceased is positive towards organ donation, if his or her wish was unknown. The rela- tives have the final voice and have right to say no to donation if the deceased’s wish was unknown. A common result of this ignorance is that relatives prevents a possible donation by expressing their veto. Therefore, it is important for indi- viduals to make their wishes known either by register on the database, on a do- nation card or discuss the issue with the family members. It will automatical- ly lead to a donation if the deceased’s wish is unclear and the family member can’t interpret how the deceased wanted it to be. The reason to this is that the majority of society is positive to organ donation. Read more about this later.

PERSONAL DATA PROTECTED BY THE PRIVACY LAW

Data from the database are carefully protected by privacy law (Personuppgiftsla- gen, PUL 1998: 204). A restricted amount of qualified hospital personnel and the National Board of Forensic Medicine who works with biological material from de- ceased people have access the data on the database. It is not until someone comes up for a possible donation that staff log on to the database to search for names of individuals that are treated for the irreversible brain death condition.

Organs and tissues that can be transplanted today.

i) Cornea (tissue).

ii) Heart and heart valve (tissue).

iii) Lung.

iv) Pancreas.

v) Liver.

vi) Kidney.

vii) Small intestine.

viii) Tissues (skin and bone tissue).

Eight organs can be transplanted, but three to four organs are trans- planted in most cases (see ref. 34).

Donation Cards

Most pharmacies, hospitals and health centres in Sweden provides donation cards that you sign with date, your name, personal number, your wishes and put it in the wallet. The National Board of Health and Welfare claims in a press release that they try to get all pharmacies, hospitals and health centres to order donation cards.

They also claim that the donor cards should be clearly visible and accessible.

Test: to ask for donation cards at pharmacies

I visited three pharmacies in the town Köping to see if they had donation cards.

I brought a video camera and recorded the process undercover. Two of three phar- macies provided cards but only one had the cards visible and accessible in the store. The second pharmacy that provided donation cards stored them behind the checkout counter, the video is accessible at my blog (see reference 5). At the phar- macy where they stored the cards visible in the shop, a person I knew helped me to find the cards. She asked how may I needed. She gave me three cards. At the other pharmacy I visited in Köping (that offered donor cards) plus a phar- macy in Umeå that I visited to make the same kind of test, they just gave me one card. I feel that many people discuss this topic with their loved ones before they make a decision to write down their wish on a donation card. With other words;

I expected them to ask how many cards I needed.

The Declaration of Istanbul - Curbing Organ Trafficking and transplant tourism

What is important to mention in this context is the organ trafficking which is a re- sult of the shortage of human organs. Trading in human organs is illegal in virtu- ally all countries of the world. A group of international medical experts met each other in Istanbul 2008 in order to frame strategies to stop organ trafficking and transplant tourism and the work has since then been broadened out and devel- oped. The Declaration of Istanbul have been signed by 80 different international organizations and authorities. The group have among other things, worked out a document about risks for both buyers and sellers of human organs in general and kidneys in particular [8].

What it means with organ trafficking and transplantation tourism

Organ trafficking and transplantation tourism means that money or other mean- ingful material compensation is paid from the receiver to the donor. Money is often transferred from the buyer and the seller between an intermediary, who earn most of the money for the “service” that he offers. The price is often higher com- pared with a legal kidney transplantation from an living donor and the care offered is generally worse than in countries that offer legal transplantations. There are more cons than pros with organ trafficking and both donor and receiver exposes to unnecessary risks. The risk of complications is higher if those operations are performed illegally because most hospitals where such operations are performed doesn’t meet current safety requirements. The follow up of illegal donations are usually also deficient. The illegal trade with human organs pose a threat for legal organ donations development in both the receiver’s homeland as well as the coun- try where the receiver travels to buy the organ. Trading in organs is a threat to the health of both donors and recipients and can not be justified either medically or ethically. A persons economical situation must not be dependent of that he or she sells their body organs.

INTERVIEWS

The image shows the message I wrote on a social network to a woman in her mid -life who recently had got a liver transplanted. The following chapter contains in- terviews with three receivers and three Donor Coordinating Doctors.

Anna - liver transplanted woman

I connected to a group on a popular social network where people could discuss organ donation questions. I responded on a post made by a woman who had gone through a liver transplantation, the woman was open for questions so I presented my self and my project and she replied that she wanted to help me. She answered my questions over e-mail and this is her story.

Anna is around fifty years old, living in Stockholm. She has the most worse type of hepatitis C. Anna went through the transplantation in November 2011, after fourteen months of waiting time. Anna has the blood type A Rh negative. Women who have A Rh negative gets a vaccine that prevents the next child from getting jaundice. When Anna became pregnant, either in 1978 or 1980, she got this vac- cine (called Anti D) which was developed by blood taken from a donor who most likely was infected by Hepatitis C. Hepatitis C is a insidious disease which has been known for not longer than 23 years, and that is the reason why it almost took 30 years until she found out the diagnosis. Anna started an Interferon treatment in January 2011 but had to stop three months later because it didn’t help. Anna had discussed the question about organ donation with her family members before she got the diagnosis, but the discussion was not that deep and it didn’t lead to a “final decision”. She felt immortal, the whole topic was unfamiliar for her and moreover, her initial thought was that no one should cut in her body. She has discussed the topic with her loved ones after her transplantation; she brought a bunch of donation cards from the hospital which she got friends and family to sign. Now, Anna goes on a life long medical treatment and she has to avoid certain fruits which, if she eats it can repel the organ. Anna is expected to start work again in November 2012, one year after her transplantation.

Elin - kidney transplanted woman

I also got the opportunity to interview another woman, we can call her Elin and she is a bit younger than the previous person I interviewed Anna. Elin has diabe- tes which first damaged her pancreas and later even her kidneys. She lives in Umeå and is unemployed, much due to her poor vision and the time she used to set off for dialysis before her transplantation. Elin has tried to study at the University but she felt that it was too much because that she had to go on dialysis. In July 2006, she got the message from the doctor that her kidneys were in such a bad condition that she needed dialysis treatment. She went for dialysis three to four times per week in two years before the health care found a donor that matched her blood type which lead to a kidney transplantation in October 2008. She has annual health check-ups of the kidney. The kidney was the only organ that could be transplanted from the donor and the kidney’ condition was 29%. Elin didn’t want to donate her organs before the diabetes destroyed her organs, she wanted her dead body to be in one piece without any scars. Moreover, her husband don’t want to donate his organs even though Elin got a new life from a donor. However, after her kidney transplantation, she changed her mind completely. The only organs that she still don’t want to donate are her eyes, partly because of her eye disease and partly because she think that she might need them if there are another life after death. Elin believes that the new organ gives her parts of the donor’s personality. This came to Elin’s mind right after the transplanta- tion because she got back her period right after the transplantation, which she lost when she started the dialysis treatment. She stayed at the hospital for two weeks of rehabilitation and after that. The norm is that ware a mask and avoid contact with other people for one month. Elin got the opportunity to write a brief and anonymous message to the donor’s family. She expressed her thankfulness and wrote some lines of how her life has changed since the transplantation. She thinks that parents should talk about this topic with their children as soon as they get aware of their desires and starts wonder what happens after death. A good situation to talk about what each family member has done during the day and even bring up questions such as organ donation, is when the family is gathered together around the kitchen table eating dinner. Elin have to eat medicine and she must avoid the same type of fruits as Anna for the same reason. It is important to drink two litres of water per day and to avoid big amounts of alcohol in order to keep the kidney in a good condition. In the writ- ing time, two years and three months after the transplantation, the status of her only kidney is down at 20%. Elin believes that she needs a new kidney within two years of time, if the status of the kidney keeps falling like this.

Peter Desatnik, Donor Coordinating Doctor

I met Peter Desatnik who is a Donor Coordinating Doctor in Skåne Regional Council.

Within Skåne, there are 14 hospitals with Intensive Care Units and there are 1,6 mil- lion residents in that area. Each year they can identify between 20 -25 potential organ and tissue donors. Skåne Regional Council participated in a project called ETPOD;

European Trading Programme on Organ Donation [9] and I was curious to hear how their work had change since then. The aim of ETPOD was to develop the quality of identifying organ donors, Skåne was the only council from Sweden that participated and it involved staff from the intensive care units and transplant surgeons. The result that they achieved from the participation of the project including other work they have done has made the staff more confident in critical situations such as when they have to approach family members and inform them about difficult conditions related to the patient’s health and even death certificates. If the staff feel secure and act se- curely in the communication with the relatives, the chance will increase that the rela- tives also will feel confident. The staff’s attitude has changed from being a bit hesi- tant to understanding the importance of identifying organ donors and to incorporate that into their work. I used the article written by Bengt- Åke Henriksson as a template for a flow chart (which is shown at page 16) and showed it for Peter who reviewed it and gave me some feedback (see reference 6). Last but not least, I introduced him to the Stakeholder Map which consisted of a set of laser cutted characters made of acrylic. I wanted Peter to place the characters on the table and, from his point of view, state their roles and relationship with each other. There is an illustration of how Peter sees the next page and the appendix [10]. A video of it can be seen at my Vimeo- ac- count [11]. Peter liked the concept with the acrylic characters; he saw a potential to use this method together with the staff at the intensive care unit in order to develop their relationships. In the end, we discussed different ways to go in the project; Peter suggested to focus on making the health care’s process of identifying potential organ donors more visible and transparent by creating a flow chart that could be inspired by the human organs such as the image of the human organs as a subway map created by Sam Loman [12]. Peter could also imagine a 3-D model of a torso showing organs which could be donated such as the website www.recycleme.org [13]. Moreover, he mentioned the importance of discussing the question with their family members in the middle of people’s lives when people are in their right minds. A platform where

Internal stakeholders

External stakeholders

Receiver Receiver - I.C.U.

Government - I.C.U.

Family member - I.C.U. I.C.U. - public

Designer - I.C.U. Pharmacist - I.C.U.

Donor - I.C.U.

Colleagues - other I.C.U. staff I.C.U.

Socialstyrelsen - I.C.U.

Government Pharmacist

Other staff members at

the I.C.U. Colleague

Designer/

Web Designer

Transplant surgeon

Socialstyrelsen (The National Board of Health and Welfare)

Transplant surgeon - receiver

Brief video- clip of the Stakeholder Mapping at: https://vimeo.com/36686525 Long video- clip of the Stakeholder Mapping at: https://vimeo.com/36686526

Mini workshop / interviews

I invited two participants for an interview or workshop session at school. The partici- pants were Anders Rydvall who is a Donor Coordinating Doctor at Norrlands Uni- versity Hospital in Umeå and Malin Haglund, the Vice Chairman and Secretary of the Kidney Association in Västerbotten [14]. The aim of this meeting was to discuss and cover eventual gaps of my research. Malin was born with a kidney disease and she got a new kidney in 2002. She is open for discussion about this topic. I let them play two role plays; the first was between a donation manager and a family member [15]. A patient had just died and the doctor (Anders who played himself in the role play) had to inform the deceased’s family member about what just had happen. What I wanted to know was to hear how he expressed himself and how the family mem- ber received the message. It was a bit odd for them to picture the critical situation, especially for Malin who played the deceased patient’s relative. However, the doctor did it well, he used simple words in order to get the message right. The discussion led to how the staff at the Intensive Care Unit works in general. If a patient has got special medication, the doctors have to make a cerebral angiography examination of the brain to verify total brain infarction (see flow chart). Then it could be necessary to move the patient to a bigger hospital that has the equipment to do this examination.

The doctors have to ask the family members of the patient’s attitude to organ dona- tion in order to know whether the patient can be transported to the next hospital to perform the examination, declare the patient dead, look the wish up and then maybe donate the organs. The option is to skip the transportation of the patient and turn off the ventilator so that the patient’s heart will stop. The current law forbids the health care to ask family members or even search in Donationsregistret for the patient’s wish until he or she is declared dead. The legislation says that a ICU treatment that doesn’t benefit the patient’s health condition must be turned of and since the patient’s attitude to donation does not count as a benefit for the patient. This is a problem for the Intensive Care, most of the staff want the politicians to change the law so that the health care can treat patients who wants to donate their organs and tissues until the ICU can identify the patient as a potential donor (according to Peter Desatnik).

Furthermore, many doctors wants a change in the law that gives them permission to search for names in the register before the patient can be declared dead. Anders is one of many doctors who are critical to Donationsregistret because of this. However, he

START

Accident with brain injury

An ambulance takes the injured person to a hospital.

In the emergency depart- ment it is decided if the patient need intensive care or can be treated elsewhere

Hospital Journey

The patient’s condition deteriorates The patient is

treated in the I.C.U.

and on ventilator

The patient is treated in the emergency department or somewhere else but without ventilator

First when the two clinical neurological examinations has showed that the patient doesn’t have any reflexes, the next step is to ask if the patient has taken any special medications and the brain is medically or pharmacologi- cally affected, a cerebral angiography must be done to verify total brain infarction

NEXT

ROW

NEXT

ROW

Is it necessary with cerebral angiography?

Declare the patient dead if/ when the cerebral angiography test shows that there are no circulation The patient can’t be declared dead if the cerebral angiography test shows that the patient still has circulation

Search for the patient’s wish in Donationsregistret (from the new hospital) and take the final decision wheter a dona- tion can be performed or not Yes

Negative to donation = stop the ventilator

The patients wish was not registered at Donationsregistret

Positive to donation. Go to bottom row on next page

The relatives says no. Stop the ventilator

The patient was negative to donation. Stop the ventilator The relatives believes that the family member wanted to donate so they says yes to transportation to another hospital and perform the cerebral angiography test Cerebral angiography device exists at the

hospital. Perform the cerebral angiogra- phy and declare the patient dead

Ask the patient’s relatives whether they knew the patients wish

Cerebral angiography device does not exist at the hospital. The doctors asks the patient’s relatives whether they allow the healthcare to transport the patient to another hospital for making the cerebral angiography and to donate the organs

No, it is not necessary to perform a cerebral angiography. The patient is declared dead. Talk with the family members and search to see if the patient’s wish is registered in Donationsregistret (the database of the Swedish Council for Organ and Tissue Donation)

It is suspected that the patient has developed a total brain infarction. To verify a total brain infarction two clinical neurological examina- tions have to be performed. This can be performed at every hospital

No, negative to donation = stop the ventilator

The patients wish was not registered at Donationsregistret.

Go to the first row on next page

Positive to donation. Go to bottom row on next page

Go to the first row on the next page

STOPReceiver(s) to the / those organ(s) will be contacted

If the receiver are in need of a kidney: he/she will first get dialysis, shower and other preparation before he/ she arives to the operating table No = Stop the ventilator

Yes = a transplantation coordinator and a transplant surgeon decides which organs that could be transplanted The doctor who had

reponsible for the treatment of the deceased patient makes the decision if a donation can be made The wish was not known/ could not be identified

If the patient had not registered his/ her desire at Donationsregistret, start read from here

The family member(s) tries to interpret the family member’s wish.

Doctor asks: ”How do you think ... would have want it?”

No = stop the ventilator Veto = No = stop the ventilator

Yes = enables for donation No = stop the

ventilator

Veto = No = stop the ventilator Yes = enables for donation Family member(s) don’t know

No =

stop the ventilator

Yes to organ and tissue donation

Doctor asks: “Do you let us donate the organs if we decide that it should happen?

However, you still have the opportunity to say no”

The wish was known/

documentated

Kept a donation card in the wallet

Oraly spoken to the family member(s)/ close friend(s)

NEXT

ROW

According to the Swedish law of presumed consent; 8 out of 10 Swedes are positive to donate their organs and tissues after death. The groundwork that lead to the Swedish Transplant Act, the 1st of July 1996.

Many families are using their veto when they havn’t been aware of the family member’s wish.

Bengt- Åke Henriksson, Donor Coordinating Doctor

I got different viewpoints and feedback on the flow chart depending on which one of the three Donor Coordinating Doctors I talked to. I guess that is because of their experiences and personalities. One doctor wrote me an e-mail with just text of what I had to change, another doctor suggested that the two of us should talk over phone and the third one asked me if I could send him a file that he could add comments on. I de- cided to print three copies of the flow chart and send an example to each one of them.

I had the opportunity to go meet my external mentor Bengt- Åke Henriksson in per- son the 23rd of March. We discussed the process of my flow chart I had sent him and we also corrected some steps and a few language mistakes in the document. I also presented some very early sketches that I thought could lead to some concepts.

However, I didn’t get any feedback from Bengt- Åke, when it came to the ideas. But it might not be up to him to determine that and I didn’t ask.

THE FUTURE OF ORGAN TRANSPLANTATION

I briefly want to mention how the scientists think that they can solve the problem of the shortage of human organs that is today. The biggest challenge for scientists seems to produce solid organs artificially. There are a brief and informative Ted- talk video that explains how scientists are thinking and what they are working on and what’s already possible to do artificially. Here, I am presenting a brief section of the video.

For more information please visit the Ted- talk’s website [20].

Ted Talk - Anthony Atala: Printing a human kidney

Scientists are now working on how to print human organs in order to save lives ba- sically by using bio materials and cells together. There are three major challenges;

namely to design the materials that can go in to the body and do well over time.

The second challenge is to certain cells can’t be grown from patients, these cells are from liver cells and nerve cells. The third challenge is the vascularity, by that means the supply with blood to the organs, ones the organs has been generated. As the title reveal, the video address some printers, especially a printer that can produce an artificial kidney layers by layers that the scientists develop. However, the kidney structures are early prototypes that are being studied experimentally and they are years away from functioning and clinical use.

Successful corneal surgery

In 2007, ten people with different types of corneal diseases and damages had a cor- neal surgery and got back their vision [21]. This happened in Linköping, Sweden.

The solution is a biotechnology, it is corneas that is produced by the body itself and artificially by using stem cells. However, it remains a lot of tests before the technique can be adopted on a larger scale with people who have other eye diseases. Partly be- cause it takes long time to develop and partly because the shortage of tissues makes it

Meeting with a nurse at the local blood central

I visited to the blood centre at Norrlands University Hospital asking a nurse some questions about blood donation to see if I could get some interesting similarities with how blood donors and organ donors think. As a background; my father introduced me to the blood central when I was 18 years old, and I have been a blood donor ever since.

When I just entered the blood centre, I saw a box with donation cards (the same cards as the pharmacies offer) on the reception desk next to some flyers about the national register for possible stem cell donors [16]. The staff at the blood centre thinks that all organs are important and all existing possibilities to donate needs to be promoted.

The blood centre gets help from the local newspapers in Umeå when the pages has to be filled up with information. An other big campaign is a trail running competition called “Blodomloppet” which is a collaboration between the blood centres, Korpen, which is a sports organization and a big grocery chain Ica which sponsors the race (in form of a free picnic bag for all those who participates in teams of five runners [17]) and offers their stories as a meeting point where people some times can stand to so- licit new blood donors. The blood central are also trying to solicit new blood donors at the university area three to four times per year. There is also a national group that works to solicit blood donors and also the World Blood Donor Day (the 14th of June) when Swedish blood centres are planning to arrange a big campaign.

Blood donors thinks that they do an important thing by with their gift and the most loyal donor is a person who have had a family member who have got much blood.

The nurse I talked to thinks that the general attitude towards blood donation is some- thing like: “someone else can do it, I don’t need to do it.”

On the question: why blood donor campaigns seems to be more frequently than organ donation campaigns, the nurse answered “The tradition of donating blood is longer than the tradition of donating organs”. I got the same kind of perception at the meet- ing with Peter Desatnik when he mentioned that the staff changed attitude to identify- ing donors. Moreover, organ can only be donated one time while blood can be donat- ed repeatedly. The nurse continues; “some people fear the needle especially younger men I have noticed”. The most common excuses not to donate blood are “that is up to some one else, not me” and fear of the needle. “A blood donor is a person who are thinking of others, they are solidarity, and a little bit of idealists”, she says.

Det vita arkivet - The Withe Archive

The White Archive is a document that undertakers provides helping people to docu- menting their last wishes, like a testament. They uses a card where the user writes his or her name and where the booklet with the user’s wishes is stored. The booklet could be stores either at the persons home or at the undertaker Fonus without any cost.

SURVEY

I decided to create a survey for the public [18]. I decided to use social medias as a tool to get reach people from different countries. I sent the survey to people I have or have had contact with before via email and I even got hold of email addresses to some of my parent’s colleagues. Moreover, I got the opportunity to ask a group of pensioners (consisting of ten former teachers at Umeå municipality). I used Google Documents in order to create the questions. Even though the survey is not statistical significant, it reveals people’s experiences and their opinions in these questions. I asked 51 peo- ple of their thoughts and experiences, some of their statuses were: students, nurses both at intensive care units and general nurses and pensioners. The respondents were between 20 and 85 years old. Most of them were born in Sweden and still living in Sweden but there were also some who grew up and lived in other countries as well.

The participants were both “normal” people who both had and had not thought about these questions before. There were also people who have gone through organ trans- plants themselves, relatives to people who have died due to too long waiting queues for organs. There were also some respondents who worked as hospital nurses and ICU nurses.

The following two pages are a sum up of the survey I handed out to a number of people in the beginning of the project. If you want to know more details from the questions, see the complete answers form the survey or read comments I got from the staff survey I handed out, please read appendix number 7. The same questions are presented there too as traditional pie charts.

Male

39%

Female

61%

20 - 85

Years old

Countries where the respondents was born:

Sweden: 33 respondents

Denmark: 7 respondents

U.K: 2 respondents

Norway, Canada, China, Iran, Brazil, Lithuania, Lebanon, New Zealand and U.S.A:

1 respondent from each country

51

In total: respondents

No:

12%

Yes:

88%

No:

67%

39%

Don’t remember:

6%

Yes:

21,5%

No:

78,5%

Yes:

55%

2) Do you think it is important to discuss this issue with your family members / partner at all?

Yes:

33%

3) Do you see any obstacles to discuss the topic with other people?

4) Have you ever been in a situation either personal or family related when you feel it is important to talk about organ donation?

5 a) Are you a registered donor in your country/

province/ state of recidence?

For both:

55%

online:

29,2%

state online database:

in person:

23,6%

a donation card:

other:

relatives/

family members:

I don’t know:

For transplant:

46%

For medical research:

6) What options did you have for registering organ donation in the country where you were born?

7a) If you are a registered organ donor, what process did you go through to register yourself in the database?

5 b) If yes; what kind of organ donor are you in your country/

province/ state of recidence?

4% 12,5%

Other:

6%

19,5%

I haven’t register but I have given my family permission to decide

22%

23,6%

19,5%

23,6%

13) Do you think people compare themselves with their family members when they try to make up their minds about organ donation?

3:

37%

4 (Yes,

very much):

31,5%

11,1%

INSPIRATION/ BENCHMARKING

Before I entered the ideation phase, I needed some inspiration, so I searched for existing or previous products, campaigns or network platforms. I publish more inspiration materials at my thesis blog (see reference 5).

The image at the top is a set of vinyl characters made by David Foox [22]. The toys can be ordered online and they come in a blind box concept which means that is a surprise which organ you will get. This reflects the reality because as a receiver, you never know in which condition the organ you are waiting for will have and I like that item of the concept. The face that is covered by a note is a poster made by Brazilian Association Of Chevrolet Dealers [23]. The piece of paper has a message saying: “YOUR USED ONE ACCEPTED - year, colour, model not important. Can even do without additional features.” They use the same kind of under lying mes- sage namely that it is unclear how the organs you receive are, but it does not care since it save lives which is the most important. The two screen shots of the topless man is a really nice and interactive website called Recycle Me (see reference 9).

The website is filled with information about organ donation such as fact about or- gans and it offers people to register as potential donors. The background is covered with names of people which I assume have registered their desire. The illustration that looks like a map over a subway network is a poster called Transport for Body (see reference 8). The map uses names of organs and body parts instead names of stations. It is nice because it is transparent and some how shows how everything is connected.

No:

12%

Yes:

88%

No:

67%

39%

Don’t remember:

6%

Yes:

21,5%

No:

78,5%

Yes:

55%

2) Do you think it is important to discuss this issue with your family members / partner at all?

Yes:

33%

3) Do you see any obstacles to discuss the topic with other people?

4) Have you ever been in a situation either personal or family related when you feel it is important to talk about organ donation?

5 a) Are you a registered donor in your country/

province/ state of recidence?

For both:

55%

online:

29,2%

state online database:

in person:

23,6%

a donation card:

other:

relatives/

family members:

I don’t know:

For transplant:

46%

For medical research:

6) What options did you have for registering organ donation in the country where you were born?

7a) If you are a registered organ donor, what process did you go through to register yourself in the database?

5 b) If yes; what kind of organ donor are you in your country/

province/ state of recidence?

4% 12,5%

Other:

6%

19,5%

I haven’t register but I have given my family permission to decide

22%

23,6%

19,5%

23,6%

1 (No, I don’t think so):

13) Do you think people compare themselves with their family members when they try to make up their minds about organ donation?

14%

2:

17,5%

3:

37%

4 (Yes,

very much):

31,5%

11,1%

Amit Gupta is a South Asian guy (South Asians are severely under-represented in the bone marrow pool) and he have leukaemia. His friends gathered together and cre- ated a website called Amit Gupta Needs You (www.amitguptaneedsyou.com). The aim was to connect with people, swab them and register them in the bone marrow pool in order to find a donor with the same blood type. This initiative was success- ful, eventually they found a person who had the same blood type and were willing to help Amit Gupta which saved his life (the left image on the top row). Geblod.nu is a national website for blood donors in Sweden with local information about each county’s blood centrals (the right image on the top row). They publish different types of information, reportage, competitions and so on.

OpenIDEO challenge has made a project in collaboration with Haas Centre for Pub- lic Service at Stanford University to explore new ideas for encouraging bone marrow donation worldwide [24]. For example, South Asian people are dramatically under- represented in most of the bone marrow registries. Take all of me (www.takeallofme.

nu) is a local campaign which is an initiative of the local Kidney Association in the County of Västerbotten, in northern Sweden (the right image on the second row).

The local population is prompted to make their standpoint known for their loved ones. According to Malin Haglund, the vice chairman of the Kidney Association of Västerbotten, the campaign has cost a quarter of a million Swedish Kronor to realize.

A bandage kit (www.helpineedhelp.com) doesn’t just help people to stop a wound from bleeding, it also offers people to link each other with people who needs bone marrow tissues. With other words, you stop the wound from bleeding and get your bone marrow data at the same time (the left image on the third row). Mayo Clinic (the right image on the third row) has a web page with transplant patient stories [25]

different people tell their stories in text as a way to make it a bit more personal and emotional.

Notankers.ca (left bottom row) is a website with a video with a very simple message which is to take action against the oil spill that ends up in our oceans every year.

Black paint in form of a tanker covered a message. The rain washed out the paint so that the message got visible. Donate Life (www.donatelife.gov.au) is a national network for health care sector in Australia with a lot of good information published including how to start a family conversation about this and so on (the right image on the bottom row). They have a theme called “DonateLife family” which means that

Sum up from the phase

Sum up from research

• Two of the transplanted people I have spoked to had to rehabilitate between fourteen days and one year before they could start work again after their trans- plant. Moreover, the woman I call Elin had to stay for two weeks at the hospital to rehabilitate after the transplant and then ware a mask in front of the mouth for one month. She had also an eye disease which made her incapable of work. However, she has been engaged in the Swedish Association of the Visually Impaired. The woman I call Anna was willing to share her story as soon as she returned from the hospital. I don’t know how long rehabilitation time the third transplanted woman that I spoked with had. However, she is Vice Chairman and Secretary of the Kidney Association in Västerbotten. She is open for discussion and her contact information is visible on the Internet.

• Lack of information was one of the most common argument why people who answered my survey have not yet registered themselves as organ donors.

• Some people (from the survey and one of my interviewees) stated that they would not donate their organs because they think it is scary that some one will open up their body when they are dead.

• Donation cards is usually not visible at pharmacies. The customers has to ask the staff if they have cards and sometimes the staff doesn’t even know if they offer donation cards.

• Blood centrals work more actively to solicit blood donors, they arranges different advertising and campaigns such as the trail run competition called Blodomloppet and they have a big famous grocery chain as main sponsor for the competition.

They stand at the university in Umeå three to four times per year. The most dedi- cated blood donor is a person who have had a family member who has been in need of blood. Answers from my survey suggest that it works the same when it comes to people’s attitudes to organ donation.

• The food chain Ica is an important sponsor of the trail run competition called Blodomloppet which is held ones a year in 14 cities in Sweden. It works as a cam- paign to solicit more blood donors. 85.000 participants run the Blodomloppet race in 2011.

IDEATION

BRAINSTORM- SESSION

I arranged a one hour long brainstorm session in the middle of the seventh week of the project, six students from different countries and who studied different pro- grams at Umeå Institute of Design participated. The participants were asked six questions, however, some of them where quite similar to each other so the ideas I got from the different questions were quite similar. To see all of the notes from the brainstorm session, please see the reference list [26]. The brainstorm session generated many ideas; both ideas I already had thought about and new interesting ideas. After the brainstorm, I processed all post-it notes and made new mind maps with the ideas that I got from the brainstorm session (see the collage of mind maps on the next page). The ideas in each new mind maps are connected to one and an- other by a jointly word and as a bigger picture; each mind map are connected with each other in different ways. For example, I think the “family board game” idea in the game- cluster is related to the ideas in the family- cluster.

Early concepts

Follow the direct link to my blog in order to see my very initial ideas that I pre- sented at the mid-presentation but didn’t proceed with [27].

CONCEPT 1, PERSONAL CAMPAIGNS AND CO- CREATION

The idea that is presented here is a co- creation campaign and a competition at the same time, see it on In this concept, people are encouraged to create their own campaign from a pharmacy website with manifests or messages to the citizens to take standpoint. The citizens can either vote on the posters/ campaigns or create their own posters/ campaigns too from the pharmacy’s website. See the film clip on Vimeo for more information [28]. I printed out posters [29] and put up four of them at different legal poster walls in Umeå (at Kungsgatan, Vasaplan, at the city library and at a wall between Östra Strandgatan and Kungsgatan). I wrote legal be- cause it is the only places in Umeå where the citizens are allowed to put up posters in public spaces. My posters were A4 size, gray scale and I used a needle to make holes in the paper in order to make the organs easier to pick. The maximum poster size is A3 and you are allowed to put up one poster per wall, this is not respected as the image shows [30]. I visited all billboards the day after and realized that my posters were either taken away or hidden by new posters. The aim of these post- ers were first and foremost to get people to read the printed message which was to discuss their wish with their family members so that no one need to interpret you wish if you victim of an severe brain injury. I put my telephone number there and a link to my degree project blog for people to respond either by SMS or by writing a comment (either when they had raised the question or any comment). My conclu- sion is that this method is not very efficient, no one responded to me, no one had taken any organ/ link to my blog and it was almost impossible to tell if the posters resulted in more blog visitors.

CONCEPT 2, AN APPLICATION THAT TRIGGER YOUR FRIENDS TO FIG- URE OUT/ GUESSING WHAT YOUR WISH IS

The main idea with this app was to engage family members or friends by asking them if they could figure out one’s standpoint. The image shows the first and sec- ond edition of the app. See a video clip where I show a low fidelity prototype of the app [31]. An important thing to mention is that the process you go through in order to make a standpoint in this topic may take (or should take) more time than it takes for updating something on the move like an app is suitable for.

CONCEPT 3, PUBLIC ORGAN COUNTER

Umeå Kommun runs a program to develop the infrastructure for bicyclists and pedestrians. The municipality has made a web survey where the citizens had the opportunity to give their opinion of what they wanted to be improved. The result from the survey shows that the citizens wants the municipality to plan the infra- structure for bicyclists and pedestrians, they want safer roads to schools and they want the municipality to clear the bicycle roads from snow and grit as fast as possi- ble during the winter months [32]. The bicycle counters that are placed at different locations in Umeå are a part of the Kommun’s bicycle and pedestrian developing program. I made a quick search and find out at the National Society for Road Safety, NTF that approximately. 30,000 cycling gets injured each year, that means almost 100 people each day. Common causes of accidents are among other things stress, slipperiness and loose gravel [33]. More than half of those who die would have survived if they have worn a bicycle helmet. and severely head injuries are prerequisite for becoming an organ donor.

In this concept that I presented, the public organ counter could count how many organs that pass by per day and per year (eight organs per person). It could some- how also show how many that are positive to donate their organs after death. Fur- thermore, the risk that each Västerbotten inhabitants has to become an organ donor (in 2010: 0,003%) [34] could be displayed and also the amount of people stand- ing in the waiting list to receive one or more organs in the country could also be displayed (over 700 in 2010) [35]. I made a movie clip that explains this concept.

MID- PRESENTATION

I presented the three concepts at the mid- presentation but I felt that none of them were good enough to develop further. I got feedback i.e. these questions from a class mate: “is it to motivate individuals to talk about it with their family?” and the answer is yes. “Are `families`as whole involved in the engagement process?” and the answer is yes, partly. The idea with the project is to make people aware of each others wishes, it could be between siblings or between parents and their children.

The feedback I got from the programme leader and the tutor is as follows.

“A challenge to do it without ending up just with posters. Therefore, pick a target group”.

“When is it suitable and good to talk about it”?

“Maybe at this ... age, the kids understand and can decide”.

“Competition part? Be careful and think about it more, you might lose people along the way”.

“How to make it in an honest way so people don’t do it for money or are tricked to do it”.

“How to tackle the emotional aspect”.

“Your research and flowchart is excellent. You have a really good base. The solu- tion is simple; yes/ no´”.

Important: “It should be accessible, if you want to make a standpoint you should be easily able to do it visible for the family”.

“A complex process might lose people/ users along the way”.

Concept: “Organ counters; more direct, it’s is a nice try a more direct way”.

“Be careful with the touch point with the cycle counter”.

By showing the transformed bicycle/ organ counter for the community makes it closer and people can relate to it”.

“The perfect place to think about it is at hospitals”, however, not at the emergency unit or at the ICU because the doctors tries to save patient’s life.

“Most important is; you will die. Second of all take action”.

“Galas or events; call and donate organ”.

After the presentation and the discussion, I decided to decide target group and go back and iterate the ideation part in order to create more holistic ideas.

Public Healthcare

Public Healthcare

ITERATION

In order to create a wider range of ideas, I decided to go back a bit in the process to get a bigger picture and to see other approaches I could choose.

How a hospital campaign can look like

I tried to understand how hospitals use to create campaigns nowadays. The image shows a newspaper article [36] which explains a campaign that the hospital in Karl- stad has made in order to make people take a standpoint in the question. The left banner carries a statement from a man who has taken standpoint towards organ dona- tion and the right banner has the message from a man who got new corneas (which are tissues). One Donor Coordinating Doctor and two nurses stands in between the two banners.

I have illustrated the way of how I see the communication between the health care and the public below. What I feel is missing is a closer and more emotional touch point between the health care and the public. I thought; “why not engage people who are not trained as doctors but still have experienced the process?” By doing so, the gap could be bridged between the public and the health care and the great mass of the population might feel more emotional and empathic.

Bridge the “Gap”

This idea was based on what I wrote about on previous page, namely a closer touch point between the public and the health care. What if some transplanted people, by their own free will, would gather together and approach people in the street, asking them to take a standpoint (and tell their loved ones about the stand- point) in the question as a gesture to give something back to the health care? What would they use as a treat to get people to stop for a while? Would they focus on different age groups and choose different strategical locations to get the best pos- sible attention? Would transplanted people even want to go public and discuss about their past, what consequences does it mean for these people? What is the hospital’s view on this approach? Additionally, this method feels too mainstream nowadays; many companies and organizations apply this model and I personally try to avoid them in the street. I found that the idea had too many cons and which could be too controversial if I developed it any further.

Doctor’s game for Children

The idea about making a game for young children came from a statement from the woman Elin. She stated that it is good to start talk with the children about death as soon as possible (see page 15). After a quick search on the Internet, [37] I found out that children get aware of death for the first time between the age of five and nine. I phoned the elementary school Hagaskolan in Umeå and talked to the teacher Katarina Lind who teaches kids in the second grade. She stated that each year, the second year pupils has a project that is about audio, light, the body and the health [38]. They learn what the major organs do, they do some experiments, they watch films and write questions that they will answer later on. Based on that information, I started to sketch on an idea of a doctor’s game with a stethoscope for children in the age around seven or eight years old. The stethoscope could include a pair of earphones and a rfid device in the other end. A puzzle shaped as a human being with removable organs could be a carrier of rfid tags. The organs with the rfid tags could store a person’s organ story, a sound of how the organ sound like or something else. The organs could be handed out to grand parents, siblings or other relatives. If a grand parent dies, the organ puzzle piece could be passed to another person as a gesture of being an organ donor. This idea was not good enough to continue with, mostly because of the target group was too young;

they have the ability to change focus between different topics very easily.