Eye-opening Immersion Experience: What’s Behind The Scenes of Saving Children from Heart Diseases

Since 2016, I’ve been working as a nutritionist at the Children’s Cancer Hospital 57357, one of the world’s largest, most diverse, and dynamic facilities for treating pediatric cancer and the clinical host of the Clinical Innovation Fellowships’ first cohort in Egypt. There, during my work last year, I saw the fellows 2020 at our workplaces, observing and experiencing our daily activities by themselves. Their persistence to spot challenges encouraged me to apply for the program in its second year in Egypt; I was sure that I’d observe and learn about medical perspectives that I’ve never encountered before. And yes, that was true!

Through my participation in the program,  I have had my first time dealing differently with patients. It was my first time putting myself in their shoes and feeling their suffering from critical diseases. This was during our six-week immersion experience that took place at Al-Nas Hospital, one of Egypt’s and Africa’s renowned medical centers specializing in Pediatric Cardiology.

As a healthcare professional with experience of more than 12 years, mainly in pediatric oncology, the Clinical Innovation Fellowships Program allowed me to touch the real life of healthcare in Egypt for the first time by witnessing the backscenes of its operations. During the clinical immersion period, I have learned to observe and track the patient through their journey following the Stanford Biodesign methodology. But even more, I saw a significant difference between the healthcare professional perspective and the patient perspective.

We are a transdisciplinary team of four fellows with different educational backgrounds. Being part of such a team has been a value-adding to my whole career path!

At first, we worked in pairs; I had the chance to work closely with Nada our Product Designer, together we explored the hospital’s environment from the Cath-labs to the Outpatient Department. Then I discovered with Ashraf, our Software Engineer, how the hospital’s integrated systems work. With Mahmoud, our Business Development expert, I could see possible solutions for the real challenges we observed. 

Together, we interviewed the patients, and each of us saw the patient journey from a different point of view – and this was extremely interesting! After each interview, we had a discussion to show our insights and exchange knowledge. And I was always impressed with the small details my colleagues noticed – which are hard for a medical background person to pay attention to during the daily routine work.

From my side, I was keen to deliver the medical information in a simple way to my teammates, explaining each process, acronym, or medical term mentioned by the hospital staff during our interviews. On the other hand, we had periodic reference meetings with a group of representatives from each of the hospital’s departments to validate our insights. They were more than supportive of us! 

All healthcare service aspects are in focus

In fact, following the Stanford Biodesign methodology allowed me to gain hands-on experience in how to effectively keep an eye on patients, their relatives, and healthcare professionals to compile appropriate insights that could be translated to real needs and thereby transformed to tangible solutions.  

Especially for the immersion phase,  this revealing experience, it’s been a new window for me as a medical person to observe and try to solve the impact of a disease on different parties – the patients, the healthcare professionals, and the whole of the healthcare system.

However, I feel optimistic because, together with our different backgrounds and collective efforts, we can innovate a solution that can make a difference in the patient journey and enhance the healthcare systems!

Hadeer Hegazy, CIF Fellow 2021

The Journey to Identify if Patients Really Need this “NEED”

Our process of validating and shortlisting a myriad of clinical needs for a better healthcare service provision.

After having an intensive one-week workshop to understand the Stanford Biodesign methodology and how to implement it, we started our Clinical Immersion experience, which took six weeks in the Medical Informatics department at 57357 Hospital. It is a cross-cutting department, responsible for the implementation, maintenance, and support of the health informatics system (HIS), Enterprise resource planning (ERP), Patient portals, and other homegrown software that serves patients and other stakeholders.

We were lucky to be immersed in this department; it serves nearly every stakeholder in the hospital which enabled us to go everywhere inside the hospital and talk with everyone to hear more about their needs, pain, and thoughts.

We gathered a lot of observations and needs – to be precise: 985 observations and 234 Needs. Then, we faced a new challenge: We had tons of Data, but we needed to know which of them is desirable, viable, and feasible.

So, it was time to move to a more critical and analytical mindset. We went through a complicated process that was guided with the Biodesign process and we were able to build around it our own tactics to identify the valuable needs, which was a blend of qualitative and quantitative measures.

Working in a multidisciplinary team had a great impact; there was always someone that either has the answer or at least has the basic knowledge that he can with some research build on to find the answer from his perspective. To make use of that and assure that each one of the team gives his opinion about each need, by the end of each stage the ranking was a collective process, each member makes a quick pitch for the needs assigned to him and advocate for his ranking and afterward the rest of the team start building their own ranking.

Our need screening process was divided into 4 stages:

First stage

Our goal was to go from 234 to 120 needs we did so by applying the following.

  • eliminating replications
  • merging the needs that can fit together.
  • and rewriting the needs to make sure they are clear and to the point.

Second Stage

To go from 120 to 80 needs we started by doing a quick high-level research on each one of them to build basic perception and start grading and ranking them according to their feasibility, desirability, and viability.

Third Stage

To go from 80 to 50 needs – the time for digging deeper by doing more in-depth research and identify more specific criteria about them like

  • identifying the impact on the patient, the caregiver, and the clinical team.
  • how much each of them is technologically and regulatory globally and locally feasible.
  • identify how much local and global market size and spending.
  • not only that but we didn’t forget about adding criteria that reflect how much each one of the team would be excited to work on each of those needs.

Fourth and Final stage

To go from 50 to the top 20 needs and identify the topmost 3 or we call it 1+2) that we should start working on for the next stages. Our approach to making sure that the needs were carefully examined, we did intensive cross research; Each one was doing intensive research for needs that were examined by another member in earlier stages to make sure the results are correct, covered in more depth, and not biased, then reranking took place according to the new inputs.

Now, we know what matters the most and it’s our turn to channel all our power, experience, and knowledge to do something that might relieve some of the pain people are suffering and are willing to do it.

Amr Yousef
Team Bioinformatics, CIF 2020

Sliding through the Journey of Clinical Innovation

The immersion in the Children’s Cancer Hospital Egypt 57357 (CCHE) was really eye-opening for me. Coming from a design background with an interest in the medical field from a young age, getting to experience clinical care was such a treat. It allowed me to see firsthand how a hospital works to provide clinical care to its patients. It also allowed me to talk with patients and guardians directly and understand their experience of a vicious disease such as cancer and how they navigate the healthcare system in Egypt.

Design as a discipline taught me how to effectively empathise with the patients and their guardians to be able to collect proper and actionable insights that could be translated into needs, the heart of the Biodesign methodology. I was very pleased to employ this knowledge in a real-life situation and one with that kind of importance.

But what was even more rewarding while sometimes becoming draining, was speaking with the patients’ guardians. Listening to their stories and the difficulties they face was the driving force for our work. One can’t help but feel utter respect for their resilience and strength they continue to show despite the adversity.

Afterward, we moved to the needs screening phase. This phase is when we really started to crunch our on-ground research findings. It’s when we got to apply our critical thinking and collective knowledge as a team to coin our own screening process. We tried to employ both meticulous grading structures with the more organic team discussions and decision rounds to get the best of both worlds and finally reach the top needs that are backed by enough evidence and we are happy with, as a team.

Next, was the concept generation phase, the phase when the fun really begins. It’s when we get to work on the top needs and try to come up with the best solutions. It’s when I get to have the most fun! Definitely the most enjoyable part for me. I get to be playful, focus on using creative methods, mention all kinds of ideas, even the stupid ones. How I see it is this is when you move from the research and giving form to those findings. I get to sketch, use all kinds of design tools while having some childish fun!

Throughout the fellowship, we, as teammates, got to know each other better as individuals on both the professional and personal levels. And as it’s always the case, it had its ups and downs. Having so many discussions, many of them on the heated side was bound to create conflict, but that also shows the great passion that each member has. And once we sat together and talked, we were able to resolve matters and understand each other better, making the communication process better and better moving forward. Having said that, those discussions are among my favorite parts of the process. It’s those discussions that allow us to come up with the best concepts by building on each other’s ideas. Moreover, it’s important to have teammates to rely on in an unstable process such as the innovation process. It’s a road filled with uncertainties and obstacles, hard to go through alone. I’m grateful I found that kind of support in my team.

I must say, I’m utterly grateful for this experience as a whole. I got to follow my passions, learn new things, meet amazing people, and these are invaluable things, really hard to come by.

©Media Team of the Children’s Cancer Hospital in Egypt 57357

Sherin Helmy
Team Bioinformatics, CIF 2020

In the Footsteps of Thomas Edison

A lot has happened since our clinical immersion at the Children’s Cancer Hospital Egypt (CCHE 57357). During our 6 weeks at CCHE, we witnessed 678 observations, which helped us identify 314 unmet needs. After pinpointing all these needs, we faced a perplexing conundrum: how can we choose only ONE need to try to solve when each need presented an opportunity for us to innovate and improve? Also, how can we prevent ourselves from falling in love with one of the needs and remaining attached to it prior to fully understanding each of them?  And, most importantly, how can we validate whether that need truly is THE most important one to tackle?

Where the Needs Screening stage falls on our timeline.

And so we embarked on a journey to choose just one need through a rigorous, objective process of screening to identify opportunities and challenges…

We studied the disease state fundamentals of the needs…

We analyzed existing solutions…

We mapped the influence and interest of the stakeholders involved…

We evaluated the market…

And we challenged ourselves repeatedly…

We challenged ourselves to not be biased towards a need…

We challenged ourselves to not jump into coming up with solutions…

We challenged ourselves to postpone inventing…

We challenged ourselves to reject the misconception that innovation depends on magic…

In order to complete this journey though, first and foremost, we had to accept and appreciate our difference in opinions and points of view that stemmed from our different backgrounds; as our team is composed of a diving medicine specialist and technology guru (Amir), a clinical pharmacist turned business developer (Shadi),  a product designer with an interest in healthcare (Mayar), and me, a dermatology consultant and a healthcare management specialist (Dina); united together by a common passion for improving healthcare services in Egypt. Stepping into the intersection of our disciplines allowed us as a team to examine each need from multiple perspectives.

As a physician who has been working in the healthcare sector for more than 10 years, it was a unique opportunity and an eye opening experience to see how those from other disciplines view how things are done in healthcare. Despite working in healthcare for so long and witnessing and trying out new technologies and treatments as they entered the market, it was my first time to be in the “inventor’s seat”. This presented as a personal challenge as I had to disassociate from my preformed ideas about the status quo and to accept that I can influence the way things are done. In order to do so, I tapped into my innate curiosity and allowed myself to ask my favorite question more frequently (namely “why?”); and I intentionally became a more active listener as I wanted to hear and learn from the opinion and experience of my team members.

From right to left: Amir, Shadi, Mayar, and Dina.

Through an intense process, we progressively dived deeper into the needs that have the most potential. We narrowed down our 314 needs to 120 needs, then to 50 needs, then to 20 needs. We relied on different methodologies to do so; namely our intuition at times and detailed research at other times. Eventually, we arrived at the five most promising needs which—if we can solve—will have a major impact on healthcare.

Our top five needs were: a way to prevent chemotherapy induced hair loss to improve the quality of life of those receiving chemotherapy, a way to minimize the unutilized drug in the vial to decrease drug waste and save millions of pounds, a way to decrease the patients’ reliance on memory to decrease errors and improve health outcomes, a way to ease peripheral venous cannulation to improve the patients’ experience, and a way to deliver services remotely to traveling patients to increase access to care. We did not expect that choosing one need out of these top five would be the most challenging part of our journey in the needs screening stage.

Now that we have clearly identified the clinical need (the problem, the affected population, and the desired outcome) that we will work on solving, I look forward to starting Phase 2 of the Biodesign innovation process… It is now time to INVENT!

“I find out what the world needs, then I proceed to invent it” – Thomas Edison

Dina ElDisouki
Team Clinical Pharmacy, CIF 2020

From Curiosity to Empathy: Discovering People and Processes in the Children’s Cancer Hospital 57357

Just a few months ago I was watching the donation ads for the Children’s Cancer Hospital Egypt (CCHE 57357) on TV unaware that one day I would be standing under its big glass dome and surrounded by its people moving like bees in a hive. And as much as I loved presentations and enjoyed being on stage, the realization of me being there got my hands to be a bit shaky while presenting.

“What does that mean?” was probably the most frequent thing I said throughout the first couple of weeks during our orientation lectures and tours. One of the most important tools that a designer should have is curiosity; to ask and not take things for granted. I once heard that a baby’s brain collecting data is like a sponge absorbing water. And so, it was time to think like one! 

I am thankful for my team, Amir, Dina, and Shadi, who constantly educated me and sometimes explained to me medical terms and procedures even before I had the chance to ask about them. At first, it wasn’t easy and there were times when I felt overwhelmed by the amount of knowledge I had to acquire to be able to keep up with my team. Nevertheless, step by step, everything started to make more sense like combining puzzle pieces together to get a meaningful image.

Our immersion started in what initially felt like a marathon to fulfill a certain target. We couldn’t believe we would record so many observations in such a short time. Gradually, we realized it was possible and started to be more focused on certain areas in the hospital such as the Day Care Unit (DCU) where patients receive their IV infusions and chemotherapy, the Clinical Pharmacy where life-saving medications are prepared and checked before their delivery to the patients’ rooms, DCU, or the dispensing pharmacy.

At first, we quietly observed both different procedures and various interactions between the healthcare team members, the patients, and their caregivers. Then, we transitioned from being a fly on the wall to getting a first-hand experience in the complex fabric of the hospital’s operations. One memorable experience for us was entering the IV Mix, where drug compounding takes place, in our caps, gowns, overshoes, and masks.

Although we couldn’t try out the compounding process ourselves, having such a close look into the journey of the drug -from being just a label to being created in the glovebox and finally handed over to be checked and packaged with other drugs before reaching the patient- was simply inspirational. Not only because of its moral value but because the complexity of operations in this department acts as the nucleus to every success in this hospital.

During the last two weeks of the immersion, we focused more on the DCU and its patients. Based on a collection of observations and hypotheses, we felt that it needed a closer look on how things worked -specifically- from a patient’s perspective. I headed to the DCU reception to say hello to Mr. Ahmed and ask for help. He greeted me with the same smile he shows to everyone and that I have witnessed since day one at the hospital. With his guidance and better judgment, I was introduced to a mother whose daughter was to receive chemotherapy that day.

The mother, Arwa (the patient), an older sibling and me -shadowing them- started our journey from that reception desk, passing by several checkpoints such as Radiotherapy, Radiology, DCU and different assessment points in these departments. The 6-hour long journey involved a lot of challenges such as miscommunication between departments, long queues, waiting periods, keeping the children entertained… etc. I strongly believe that the hospital is offering all its best to its patients and their caregivers. However, it is almost certain that an over-populated hospital will have a hard time to pay full attention to and address the patient and the caregiver’s experience and feelings.

Empathy, in many design thinking approaches, is considered the first stage to understanding the patient and accurately identifying problems. And this experience required all the empathy I could generate. I was lucky that Arwa and her family were open about expressing their emotions and did not alter their attitude with me around them and soon enough, I myself was in sync with their mood levels. I was no longer a shadow and was trying to help them navigate obstacles as much as possible. And my notebook became a sketchbook for Arwa during long waiting periods when there was no other option for entertainment.

Despite the long day, the fatigue and occasional incidents of frustration, all went well. I went back home and even though I was quite tired and emotionally burnt out, I was content with the outcome and was looking forward to the next phase.

Mayar Morsy
Team Clinical Pharmacy, CIF 2020

Understanding cancer through empathy

The Clinical innovation fellowship landed in Egypt with an exciting collaboration between RISE, enpact, and EIT Health. On a personal level, this piece of news was very exciting to me. I knew about Stanford’s Biodesign process and I was interested in the fellowship’s implementation of the process through taking a transdisciplinary team from a need in healthcare to business creation.

Our team is a composite of diverse competencies representing the tech industry, design and the medical field. I felt right in place to complement these competencies with my skillset in health research, innovation, and business.

After an intensive bootcamp to get the teams up and running about the Biodesign process, the teams were ready to begin their six weeks clinical immersion in the Children Cancer hospital in Egypt 57357 (CCHE)

Beforehand, our team sat down and discussed our strategic focus. It was fulfilling to see how we all collectively strive to provide value and to innovate for health equity and accessibility.

All the fellows were looking forward to the clinical immersion, we started sharpening our research toolkit and we tried to open our minds to that new realm. We knew that being immersed in an advanced cancer hospital to observe how this giant being function is going to be a novel experience for us.

Our team was hosted by the medical informatics department in the hospital. After receiving a very warm welcome from the hospital’s staff and listening to the hospital’s story by the Chairman himself, the medical informatics team took us in a comprehensive introduction to get a good grasp of the role and responsibilities of the department.

The medical Informatics system in any hospital generally provides electronic health recording (EHR) of its patients and clinical decision support for its healthcare staff. The department is responsible for the implementation, maintenance, and support of the health informatics system (HIS) in the hospital. The informatics system includes Cerner HIS system, Oracle platform, and in-house developed software.

Our team was impressed by the advancements inside the system and the extent of complexity of different hospital functions and how all the pieces of the puzzle fall into place to provide clinical care for cancer patients.

We knew from our first week, that if we want to innovate for the patient, we must empathize not only with the patient but also with all stakeholders around the cancer patient (including guardians, relatives, doctors, nurses, management, and the hospital’s staff). This took shape in several forms, talking deeply with them, walking their walk sometimes and observing like a fly on the wall the other times. 

Personally, I spent the first part of the immersion trying to understand the HIS itself. I realized that it is the most sophisticated implementation of modern age technology in clinical care. Moreover, it is a land of opportunities for the future of clinical care. 

On the other hand, empathizing with the healthcare staff led us to understand their day-to-day work, the challenges they face, the emotional low points of the workday, and the most fulfilling parts of their job in their noble mission to treat cancer and relieve pain.

The second part of the immersion for me was all about the patient, the core of the system that everything revolves around. I spent time with in the team deliberately observing and interviewing patients receiving the clinical care and caretakers accompanying them, we tried to capture every single detail that affects their experience and emotions.

During our interviews, we met with the psychology team and they welcomed us into one of the group therapy sessions they did for their patients.

In the session, every patient took the chance to talk freely about their experience with cancer, the struggles, and the social and cultural challenges they face. We learned a lot through their words and their detailed description of how illness shaped their lives. For example, they described the havoc that the chemotherapy caused on their well-being and how difficult it was for them to get back to society after years spent in treatment at the hospital.

Moreover, they all mentioned feeling hopeless and lonely at some point and how this tightly knitted group of friends from the hospital kept them going.

For us, that was an eye-opener and caused a storm of strong emotions. It inspired us to try to make a positive difference for cancer patients in our approach to the rest of the innovation process.

We concluded our clinical immersion with a mind full of learnings and insights, we had the chance to capture the whole health system represented in the hospital and more importantly the human as the core of that system who deserves human-centered innovations to attain the best quality of life possible.

Hesham Shaltout
Team Bioinformatics, CIF 2020

Concerning Urinary Catheters.


A lot has happened since clinical immersion at Alingsås hospital and Lerum commune. 

One of our identified needs from the clinical immersion have been on our mind for a while to solve. It causes a lot of suffering for people and expenses for the healthcare organisations around the globe. 

Today, let’s talk about urinary catheters. 

A catheter is a flexible tube that is inserted into a body cavity or channel to remove or add a fluid. A urinary catheter is a tube with one end in the urinary bladder, and is used for draining urine. One of the most commonly used type of catheters are “foley catheters”, or indwelling catheters. Please see the illustrative figure below. A catheter is inserted into the urethra, and kept in place in the bladder with a 10 ml balloon (a) inflated via a port (d). The two holes in the crossectional picture of the tube in figure b are fluid channels for the balloon and the urine. The catheter is connected via a junction (c) to a drainage bag (f) which is strapped to the wearer’s leg. Urine is collected in the bag, and emptied from a drainage port (g) several times per day into a bottle or directly into the toilet.

And no. They are not comfortable to wear.

Why are urinary catheters so important? 15-25% of all hospitalized patients get an indwelling catheter during their stay at the hospital [7]. Some need it because their natural ability to urinate is temporary not functioning properly because of neurological dysfunction (e.g. after a stroke), anesthesia after surgery or because of obstructing scar tissue or tumors, etc. Assuring a proper flow of urine and thus a proper kidney function is vital [8]. From a palliative care perspective, a catheter gives terminally ill people and frail elders a better quality of life through a higher sense of integrity and dignity, when the alternative is to wear an adult diaper or having to struggle going to the bathroom several times per day and night [9].

The biggest issue with urinary catheters are that they get dirty (big surprise!). As time pass, skin and bowel bacteria start to grow a biofilm on the surface of the catheter, spread and cause urinary tract infections (UTI).


So, what is biofilm? Remember the last time you went to the dentist? And the dentist said: “You should floss. Flossing is good.”  And then you said “Yeah , okay. I’ll floss.” And then you went home and flossed your teeth and removed a bunch of white goo from between your teeth. That’s biofilm! Biofilm is basically a shelter made out of secretory products which are released by bacteria to protect them from bactericidal substances like antibiotics and the immune system. It also protects bacteria from naturally being flushed away by urine. Biofilm is a supervillain in a hospital setting, next to multiresistant bacteria. Biofilm grows and spreads on the surface,  “ascending” up the catheter to the bladder or urethra and infects the mucous membrane [10]. 

The risk of getting a urinary tract infection increases with 3% – 7% for each day when you have an indwelling catheter [2][1]. Catheter-associated urinary tract infections (CAUTI) are inevitable after a month of use! CAUTI’s make up more than 30% of all hospital acquired infections [1]. 

Not only does the infection cause patient suffering with symptoms like fever, chills, abdominal pain and smelly urine, but it takes time and effort to treat for the hospital [11]. What if we could save time from the nurses, doctors, the hospital lab? What if we could shorten the hospital stay with a day or two? [12] What if we could prevent a few of the 13000 annual deaths related to complications of UTI? [2] 

Another issue with CAUTI is that the treatment requires antibiotics, which contribute to the global problem of antibiotic resistance [4]. In some countries where use of antibiotics is less regulated, patients with catheter are given antibiotics preventively [5].

Are you convinced yet that CAUTI is worth trying to fix?

Our mission in the past weeks have been looking into ways to prevent bacteria from traveling inside the catheter from the drainage bag to the bladder and cause a symptomatic infection.

We are far from the first to learn that this is a problem, catheter manufacturers and innovators are developing antibacterial catheters. With that in mind, any innovator in this field need to find an edge. You need a specific piece of insight and resource that no one have had before. 

There are many different catheters that might reduce incidence of CAUTI. In recent years, antimicrobial technologies have been tested [6]. Why are they not being used instead of the catheters that contribute to CAUTI? You might ask. One problem is the higher cost compared to a non-coated, regular silicone catheter. Another reason is that the doctors and the people who make financial decisions at the hospitals are skeptical about new technologies. There just isn’t enough valid data on the long term effect of the new tech. A third reason might be rigid purchase agreements that hospitals have. Not all hospitals in Sweden have the opportunity to buy silver alloy coated catheters, even though silver coating have shown significant efficacy to reduce formation of biofilm [13].

So, how do we find a solution that meet the needs of all stakeholders around this device? Not only does it have to be simple enough for care staff to actually want to use compared to the benchmark product, but cheap enough to manufacture and bring to the market for hospitals to purchase. It has to be safe enough for the patient to use.  

Just like the airplane, the current design of catheters haven’t changed much since the 1930s. It might be a dogma issue. The current solution is well proven. It simply works. 

Marcus Bilgec


  1. https://www.who.int/infection-prevention/tools/core-components/CAUTI_student-handbook.pdf
  2. https://www.cdc.gov/nhsn/PDFs/pscManual/7pscCAUTIcurrent.pdf
  3. https://www.cdc.gov/infectioncontrol/guidelines/cauti/background.html
  4.  https://www.nature.com/articles/nrurol.2012.68
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4043103/
  6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5316300/
  7. https://www.cdc.gov/hai/ca_uti/uti.html
  8. https://alfresco.vgregion.se/alfresco/service/vgr/storage/node/content/25447/Bl%C3%A5sscanning,%20bl%C3%A5stappning%20och%20KAD%20-%20v%C3%A5rdhygien.pdf?a=false&guest=true
  9. Interview with nurse in palliative team.
  10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298070/
  11. https://www.healthline.com/health/catheter-associated-uti#symptoms 
  12. Mail interview with Urologist Henrik Jonsson at Alingsås Lasarett.
  13. https://www.nursingtimes.net/archive/can-silver-alloy-catheters-reduce-infection-rates-23-07-2011/

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.