Researching death: The journey of a human-centered service designer

As part of RISE’s Clinical Innovation Fellowship, my team members and I were tasked to research the journey(s) of palliative patients and their caretakers in Lerum Kommun and Alingsås hospital. The purpose of the project was to understand the palliative patients’ experiences by including perspectives and needs of all stakeholders, while using Stanford’s BioDesign method. Looking into the lives of terminally ill people from human-centered perspective, while immersing into a clinical healthcare environment was an intimidating undertaking. My head was full of doubts and questions. Do I have enough courage to temper with the subject of death? How can I be both professional, strong and yet empathetic and respectful towards the life situation of palliative patients? What does need-driven innovation looks like in the field of palliative care?

I turned to what I know best, and that is ethnographic field research. It feels like solving a rewarding puzzle. While it takes a lot of time, identifying and categorizing piece by piece large amounts of research data from interviews, shadowing, meetings, and home visits, I am always curious and excited about meeting people. In our case, we were given unprecedented access to all the important stakeholders around palliative patients. 

We met some incredible healthcare professionals who were open and engaged. Over the course of our immersion, we interviewed and observed the work of medical and non-medical personal at the Alingsås hospital and Lerum kommun (including dr., surgeon, assistant nurses, nurses, dietician, pharmacist, priest, and social workers). Most importantly, we talked to many patients themselves, whether at their own homes or elderly home facilities.

While one can never understand the existential loneliness and sorrow of a terminally ill person, we got pretty close to getting to know the primary stakeholders – spending days and nights at the hospital and elderly home, listening to their stories and seeing them at work. We saw small gestures of kindness – how nurses gently moved patients to avoid bed sores, held their hands to soothe anxiety or crushed pills to make them easier to swallow. The most memorable encounter was witnessing how an assistant nurse watched over the needs of a palliative patient during her last hours alive. She expressed nothing but love for the patient, taking every wrinkle, sigh and heavy, bubbly breath seriously until the very end. Extraordinary moment.

What I have learned from this immersion is that stakeholders around palliative patients are made of distinct professions attentending to the whole of a person. They might have complementary yet competing perspectives and priorities (i.e. medical vs. patient) which can be a challenge. Members from the same palliative team, for example, can have different understanding of and relationship to a patient, whether it is a dr. or a priest.

Team collaboration is a must in the palliative care, because the quality of collaboration directly affects patient care. Looking at all the stakeholders under the umbrella of the same project helps to identify gaps and barriers in the system (i.e. IT, law, priorities). The challenge is to identify needs and opportunities for improvement via perspectives of the palliative persons and their families though. Empathy becomes part of strategic criteria.

When meeting nurses and assistant nurses specifically, it was vital to be clear and transparent about the goals of our research project. We were there to listen and learn rather than inspect and criticize, I said many times to assistant nurse. It was equally important to show respect, remember people’s names and stay humble, which in return, helped to break the ice and get answers to crucial questions. 

And I learned that the palliative care is about living rather than dying. 

Amina Kadribasic

Team Gothenburg, CIF 2019

Nightshift experiences

Night at Alingsås hospital 2019-05-22

The clock is ticking away as Amina and Marcus arrive for the night shift at the surgery & palliative ward.

Shortly after taking a report from the evening shift nurses and administering medication to the patients, the nurses sit down in front of the TV to chat and relax. We are six people in the room, sitting in a circle. The ward is otherwise quiet and calm, quiet a big difference between the day time, when hallways are full of medical personnel, patients and visitors. 

Our tasks at hand is to experience the ward at night, raise a few questions and most importantly, understand the perspectives of the nurses. Who are these dedicated professionals, who work at night? What can they tell us about the palliative patients, when the doctors are away? How are their perspectives, routines and needs different from the day? 

“How long does it take to knit a sweater?,” asks Amina a nurse in order to get the conversation going. The night atmosphere is casual and informal, which is why it is important to start slowly and build trust. “About a week” she answers with a soft smile. Alarms beep here and there as the night staff attends to the patients’ needs. We follow after these night keepers, trying to observe and learn from them. It is a quiet night according to the staff. Later towards the morning Marcus asks, “How long have you worked during night shifts?” “27 years” she says. Both her colleagues and I are astonished. “That’s a lot of sweaters” Marcus comments. 

Marcus Bilgec & Amina Kadribasic

Night at Lerum municipality 2019-06-04

We’re almost halfway through the clinical immersion phase of the fellowship.

Today my team member Amina and I had an opportunity to shadow the on-call homecare nurses during their night shift. Stationed in the center of Lerum, the nurses receive all kinds of calls from family members, patients and assistant nurses working for different home care facilities throughout the municipality: Lerum center, Floda, Gråbo – wherever and whenever they needed support.

The shift started at 9:00 in the evenight and stretched until early in the morning at 7:00. A very interesting 10 hour shift full of visits, which ranged from giving medications to helping assistant nurses take care of people with terminal diseases. The purpose of our observation was to gain a better understanding of the night time and capture challenges and benefits of working night shifts. Having done observation at night, we knew that we would have more time to ask questions and learn.

The first visit was to help an elderly patient, starting dialysis treatment by connecting the person’s blood system to a dialysis machine to filter the blood from excess water, solutes and toxins. A nice example of a lifesaving invention.

The most memorable experience of the night was to witness the last few hours of a palliative patient’s life. She left just before sunrise while a dedicated and loving assistant nurse was by her side.

We learned a lot from this night.

Adnan Albuhtori

Team Gothenburg, CIF 2019

Mental health – challenge for Vårdcentral’s patients

In the last days of our clinical immersion in the Vårdcentral we summarized our experience, sorted observations and started to see patterns. One area that caught our interest was psychological aspect of illness. How a single event, e.g. back pain, sometimes leads through long-term discomfort into sick leave due to mental disorder…

Pain – a vicious circle

Let’s begin with a patient, who sought help in Vårdcentral for a back pain. Pain can be related to occupation, e.g. bus driver has to sit and hold the steering wheel day after day, which after some years might lead to pain in back, arms and migraines. Unless he or she changes occupation, it could lead into chronic pain. When the pain is so bad that you can’t sleep, you get exhausted. This leads to increased stress, strain of your muscles, more pain, sleep deprivation, chronic stress and eventually mental disbalance or disorder.

Pain causing sleep deprivation reinforces through stress

Mental disorders are most common reason for sick leave

In the last five years the most common diagnosis for sick leave was mental disorder, accounting for 53% of all cases for women and 41% for men. It is more common in people under 50 years old (1). In the group of mental disorders the “adjustment disorder” and “reaction to severe stress” increased the most and are responsible for half of the sick leave cases (2). These disorders don’t always need to be solved by medication and TioHundra has a strategy how to manage this: start to tackle anywhere, pain, sleep or stress, but only use pills as the last resort. It is harder to stop using medication, people might become psychologically dependent: “If I don’t take the painkiller, my back will hurt again”. There are tools to try first, learn the right exercise to relieve muscle pain with a sjukgymnast, learn to manage stress with mindfulness.

Cause of sickness leave in December 2017.
Source: Försäkringskassan, Social insurance in figures 2018 (1).

A way out: exercise for body and mind

Mental disorders have the longest sick leave periods but the disorders related to stress have better prognosis of coming back to work (2). That is encouraging and can be helped by rehabilitation and attending TioHundra’s mindfulness groups.

To explain concept of mindfulness I borrowed words from an MIT stress-professor Jon Kabat-Zinn:

” We are sorely lacking, if not starving for some elusive but necessary element in our lives. We might even have a strong intuition on occasion that what is really missing in some profound way is us – our willingness or ability to show up fully in our lives and live them as if they really mattered, in the only moment we ever get, which is this one – and that we are worthy of inhabiting life in this way and capable of it.”

“Mindfulness is actually practice. It is a way of being, rather than merely a good idea or a clever technique, or a passing fad.”

Jon Kabat-Zinn,
Boston, Massachusetts, December 2010
Foreword for a book “Mindfulness a practical guide to finding peace in a frantic world.” by Mark Williams and Danny Penman

Petra Szeszula,
CIF 2019

Carpe diem – seize the day
Image: courtesy of Maciej Szeszula

More information

What is mental disorder?

Försäkringskassa explains: Psykisk ohälsa är inte samma sak som sjukdom


(1) Social insurance in figures 2018. Försäkringskassan.

(2) Korta analyser 2017:1. Psykiatriska diagnoser. Lång väg tillbaka till arbete vid sjukskrivning. Försäkringskassan.

Palliative care – what does it really mean?

The past three weeks of immersing in palliative care have been intense. We started off by meeting the key stakeholders of the Lerum commune’s elderly and home care unit, followed by an early morning meeting with one of the night nurses.

We spent the following week immersing into the world of palliative care at the Alingsas hospital. Though many consider palliative care as the last phase (i.e. days-weeks-months) before dying, we could see that these are the moments when patients feel most alive. The intensity of the emotions that we have witnessed would it be in palliative ward or following the team on home visits, has been beyond our expectations.

Having no prior experience in the palliative care, we learned that medical procedures and treatments are only small parts of the care. The psychological, social and existential side of the care are as important, if not more valuable than medical. Doctor typically has “the talk” (called brytpunktssamtal in Swedish) with the patient at the same time as he provides support to spouses, children, and young family members. We have observed how nurses, social workers and assistant nurses engage in excellent team work in Alingsas hospital. Our clinical immersion thus far has taught us a lot.

At the same time, we managed to identify several needs that we will continue to investigate. We would like to observe further many of the other routines and procedures that the palliative team performs. During the next few weeks, we plan to observe other departments in order to have a better understanding of the patient’s journey starting from a diagnosis through treatment to palliative care phase.

Igors Berkovics

CIF 2019

Primary care – the first encounter with patients

Entrance of Norra primary care center in Norrtälje.

STOCKHOLM – one fourth of the observation phase in the primary care centers, Norra and Södra Vårdcentral at Tiohundra in Norrtälje, has already passed. We are mapping out and observing both staff and patients, each day we get more insight into the primary care systems and flows, and the incredible width and skills needed to run a vårdcentral.

What is primary care – Vårdcentral?

•be the population’s first contact with the care •be easily accessible to the population during the daytime hours •responsible for preventive work, diagnostics, treatment and rehabilitation for the most care needs
•responsible for emergency health and medical care that does not require hospital care •refer to other care when needed and coordinate and integrate the care offered to the patient •see to the patient’s overall conditions and needs (SOU 2016: 2 p.43).

The mission for primary care according to the Landsting:

Tiohundra does well

We are very impressed by the close cooperation we observed between Tiohundra’s different units, hospital and vårdcentrals – no surprise that Tiohundra won the Bridge Builder Award now in 2019!

The motivation for awarding Tiohundra: “To endorse new chains for patients between care, primary care and hospital with endurance and holistic view. This year’s bridge builders have shown that persistent cultural change, interprofessional working methods and patient collaboration, and have the potential to address society’s greatest health challenges on a larger scale. ”

Besides from Norra and Södra primary care centers we also visited Bergshamra this Tuesday. The beautiful weather accompanied us and we were excited to be able to observe the way of working in this smaller and more remote vårdcentral.  

First needs identified

In the coming week, we will dig deeper into the local needs that have the potential for further development and implementation. These needs will be presented to a reference group consisting of staff and experts in primary care to undergo an initial inspection.

For more updates, stay tuned and keep on reading our blog,
Annelie Hultman

CIF, 2019

Introducing Team Gothenburg 2019

GOTHENBURG – Today marks the first week of clinical immersion for the Gothenburg team.

Who are we?

Meet Team Palliative.

From left to right: Amina, Igors, Adnan and Marcus.

We might not have the most impressive team name you’ve ever heard. Does it sound as cool as Gangster Squad, The Avengers or Fellowship of the Ring?Maybe not, but it’s more about the contents!

We are a team consisting of four people with four very different backgrounds and skillsets.     

Amina Kadribasic a human-centered Service Designer, who is passionate about design-driven innovation in healthcare. She pursues the life of a multi-disciplinary collaborator, practicing teaching, design thinking, conflict mitigation and business design.    

Igors Berkovics is an Entrepreneur with a background in medical devices and digital health. He has several innovation programs in his backpack, and has until now been busy running his own startup.        

Adnan Albuhtori is a Medical Doctor with an entrepreneurial mindset and enthusiasm for innovation in healthcare. He started his residency in Anasthesiology in his home country. Years later he left, pursuing a new life in Sweden. At the side of getting a Swedish medical license, he worked on improving his business-oriented skills in digital healthcare through hackathons, courses, events and working in startups.   

And me, Marcus Bilgec, is a Registered Nurse and Mechatronics Engineer with a passion for product development. I have experience working in a hospital and caring for patients with neurodegenerative diseases and stroke. For the last two years, I have worked as a Mechanical Developer at Cellink, a start-up that develops products for 3D bioprinting.

The mission

Our mission is to develop a product during these eight months that can make it to the healthcare market. We have worked together for three weeks so far, preparing for the steps in the bio-design process. Last week, we started our clinical immersion at Alingsås hospital and Lerum municipality, researching needs of various stakeholders.    

What does palliative mean? Palliative care is medical care of people with terminal illness. Not only does the palliative patient face physical health problems like anxiety & panic, nausea, breathlessness, confusion; furthermore, they face many psychological health issues like fear, anxiety, sadness and depression.     

Something that might be missed by the healthcare are the social challenges the palliative patient is going through, like the financial problems that the person’s family faces of losing income, managing complex relationships and the person having to say farewell to everyone. Besides all this, having a terminal illness often is connected to an existential crisis.    

To be continued. Stay tuned to see how it goes!   

Marcus Bilgec    

CIF, 2019

Clinical Immersion Day 1

Pictured at RISE in Umeå, Sweden. From left: Dr. Petra Szeszula, Ph.D. Molecular biology, Dr. Essam Sharaf, M.D., Annelie Hultman, designer from Konstfack, and Dr. Anna Melker, Ph.D. Materials Chemistry. The four members of Team Stockholm are starting their Clinical Innovation Fellowship at Karolinska Institutet, KTH Royal Institute of Technology, and RISE Research Institutes of Sweden.

STOCKHOLM — Today we started our clinical immersion at the Norrtälje Vårdcentralen, Tiohundra. Our team includes a medical doctor, a designer, an engineer, and an economist/biologist. We bring experience from founding startups in digital health and diagnostics, and inventing personalized 3D printed objects for Parkinson’s patients. Together we represent four countries: Egypt, Czech Republic, Sweden, and the United States. We share a common passion for changing healthcare to be more patient-focused. Watch this blog to follow our journey from observing the clinic to founding our company to bringing healthcare innovation to life.

About the fellowship program: Based on the Bioinnovation program started at Stanford University, the Clinical Innovation Fellowship brings together a multidisciplinary team to solve the critical challenges in healthcare. With funding from the Erland Persson Stifelse and support from Karolinska Institutet and KTH Royal Institute of Technology, the fellows are hosted by the Swedish national research institute, RISE, providing assistance with cutting edge product development to the team.

Will applied mathematics help Elhabib to elaborate an optimal shooting strategy?

To shoot, or not to shoot, that is the question.

Elhabib warming up before the game.

During the traditional wheelchair basketball game, clinical innovation fellows are constantly faced with the choice of whether to shoot for the hoop or to hold on to the ball and hope a better opportunity will arise. Right before the game, Elhabib, our expert in optimization, tried to use his knowledge to elaborate an optimal shooting strategy without the help of a computer.

Did the strategy work?

Considering the final score, the current strategy may need some refinement.

Stay tuned, for more update!

Clinical Innovation Fellows 2017-2018


Simulation and Role Playing for Hospital Physical Environment Design

Patients falling in hospitals are a major problem in healthcare that usually goes unseen. Statistics show there are about 70,000 – 100,000 cases yearly in the U.S. Falling in hospitals results often in medical consequences that include fractures and bleedings, including internal bleedings. This makes preventing falls a priority when designing hospital physical environments. Technology today brings new possibilities for stakeholders involved in the design of hospitals and understanding different requirements for different user groups.

Semra takes the time to take a picture during her role play with a walking aid.

Battery recharged – Let’s invent!

The beginning of December has been really intensive for team Rehab. We concentrated our energies to get a deep knowledge on our unmet clinical needs and to recruit four master students, which will help us to provide local improvements for the Highly Specialized Pain Rehab Clinic at Danderyds hospital.

Luckily the holiday season came right in time to help us recharging our battery. Some of us opted for recharging at lower temperatures, like Jenny and Akvile, while Raoul, and me chose warmer charging stations.

The Golden Gate Bridge (Photo credits: Giampaolo)

Frozen lake in Dalarna (Photo credits: Jenny)

Most interestingly, while in San Francisco I got the chance to meet the Director of Global Strategic Marketing and Innovation for Johnson & Johnson. He screened our clinical needs and provided great feedback that will help us to determine which need has the greatest potential to take forward into invention.

Team Rehab is (almost) ready to invent!


Keep you posted!