Surviving a pandemic 11,000 kilometres away from home
By Fernandos Ongolly – July 2020
Surviving a pandemic 11,000 kilometres away from home
What does it feel like to be a researcher locked down for months in a city 11,000 kilometres away from home? I never knew that is the kind of experience that I was going to go through when I moved to Ireland early this year. I packed my stuff in a town out of Nairobi and was dropped by my family at Jomo Kenyatta International Airport. I recall that rainy afternoon how I left in a hurry to catch my flight to Addis Ababa knowing that come May I will be able to fly home without any hassle. That day I did not see anything strange at the airport in Nairobi but when I got to Addis, I noticed thermal cameras all over as I searched for the next terminal where I was supposed to board my connecting flight to Dublin. I wish I knew what those cameras meant at that time, at least I would have prepared myself psychologically for what was coming to unfold in February for the whole world. I arrived in Dublin the next day in the morning where I was welcomed with a kind of weather I had only experienced in the movies. Fast forward, it has been four months, I have neither been able to fly back home or my family been able to visit me in Ireland. How did I keep sane in a foreign country?
I had amazing people around me
Working with colleagues that are supportive can make you feel at home even when you are miles away. They play a big role in ensuring that you know corners that ideally would have taken you months to know within a pandemic. There are many people that have never heard from their workmates since they last saw each other in February in the office, but the fact that my team meets regularly makes it easy to share what everyone is doing with their life in lockdown. For us we have never social distanced but just kept physical distances. My colleagues introduced me to their friends that we are friends now and has helped me to expand on my network of friends outside our corner office. Through such networks I have been able to engage in more than academia. I will also be lying if I do not recognize the efforts of my housemate in making life easy for me, through him, I became street smart!
I stepped out
The beauty of being new in a place is that the environment is also new to you hence there is a lot to see every day you step out! You will be amazed with how satisfying your neighbours’ flowerpots and kids playing around can be such entertainment for you. You will discover new physical features, species of birds, plants, and behaviours. I had never seen seagulls until I moved to Ireland! Looking at these amazing birds fly deep in land and taking long walks in the bushes of Blessington and Dublin kept my weekends going. There was always a new place for me to go every time I stepped out. At some point, my brain was so engaged with discovering new places that I forgot I was in this ‘alone.’ This also gave me the chance to reboot my brain after a long week of just being me with my computer.
I never planned to travel home
To avoid disappointments, I stopped planning for any travel back home or for any chances for my family to visit me in Ireland. Every time I thought of a plan, the government in Kenya or Ireland extended the travel restrictions and this could always end up with great disappointments. I learnt that the best time to plan is when you are on that flight back home or your family is on that flight to join you. However never celebrate until you are out of that airport gate; because you never know where you will spend your next 14 days. So, stop planning, relax, and enjoy the weather!
I became a Cook
I never knew how good a cook I was until this pandemic came. I discovered how draining it can be to sit behind your computer the whole day only for you to eat foreign food at the end of the day for dinner. At that point I had to figure out how to start making the kind of food I was used to eating back home. My wife sent me local recipe books and I could consult my mother too on how to cook some sophisticated meals like traditional mushrooms. After a month, I had become an expert and was cooking without referring to the recipes and I just fell in love with this new activity. Other than working and walking, I had something else productive to take at least two hours of my day. It was important to find a way of keeping off my computer.
I learnt to be a virtual dad
During this time, a lot of water passed under the bridge. My son turned one and I missed his birthday, he started speaking, and he is walking now. All this I missed! However, I had to do my online research on how to become a dad in this era of zoom, skype, facebook etc. I practiced all sorts of kid songs, recorded myself and shared with him. I made many virtual calls to keep in touch with him. The best moments for me is him being able to learn from me despite the distance. I had to innovate on how to keep in touch with the family. However, my 86-year-old granny does not understand why I have not been home for so long.
Am I longing to go back home?
Just like all of you reading this blog, we are all longing for that time that we will be able to see our family members again, we are longing for the time that the pubs will be open, we are longing for the day that we will meet our friends and colleagues, and that day that things will get back to normal. What will you do when the day comes? What if this is our normal? I have learnt never to anticipate anything and not to have any expectations for now. I will wait and enjoy what this beautiful country has to offer.
The Invisible Threads in Project Management
By Gemma Watts – June 2020
My life has changed considerably over the past few months with COVID19, and these changes have given me time to reflect on one aspect of project management that is not as visible as the operational day-to day tasks, but I realise now are as just as important. This key aspect to project management is the connections that you make in your role as a project manager. The relationships and networks that you engage with and become an integral part of, that adds to your sense of fulfilment in your daily working life.
I work remotely from home now, as many of us are, and the “office” has become a slightly faded memory. The office is now no longer a place for people to congregate, to work together as a team and to share ideas and thoughts. The social aspect of work too has greatly diminished. The many planned and scheduled ZOOM calls do not give the same exposure or experience as those impromptu corridor chats. That opportunity to just stop and say hello has gone and in turn taking away that feeling of being part of a larger community. To some the “office” has become a place of fear with that dreaded commute to work, and having to share work space and workplace facilities again in the aftermath of COVID19. For others, the desire to return back to a life before lockdown and to a shared work place again is strong. Perhaps that community feel and the social aspect of the work place is a driving force in this.
As a project manager, I know that it is important for the team to engage with key stakeholders, not just for disseminating the research findings, but to have conversations and share knowledge with, that will have a lasting impact and make a difference to society. At the end of the day, that is what we strive to achieve with research, it is about making a contribution and that, as a project manager, I wholeheartedly support.
But I am just realising how important networking or relationship building is to the actual project manager. Managing a project can be a lonely quest, as you are usually the only administrator on the project with a unique set of skills and attributes from that of the rest of the team. But through building relationships and friendships with other project managers, you get to feel connected to people who understand your role and what you do. Who have the same challenges and obstacles. These shared experiences and stories unite us in our journey to deliver a project to the best of our ability and help us to feel part of something bigger. These relationships provide a safe forum to discuss issues, to ask for help and to pool knowledge and insights. This peer to peer learning is an essential and invaluable resource that I am only now realising the importance of.
Project Officer (PO)
All European Commission (EC) projects use an online portal called the “Participant Portal” as a 2 way communication and document repository tool. But, in addition all projects are given an EC contact, a person that is responsible for assisting with any project related queries known as the “Project Officer” (PO). The PO can become a great source of help and provide much needed clarity when circumnavigating the EC requirements. Sometimes unforeseen circumstances can occur during the management of a project, such as COVID19 for instance, and by having that relationship with the PO in place, you have another source of support and guidance to assist you in your role as project manager. Building that relationship early on in the project makes it easier to contact the PO when you need to, rather than avoiding the PO because of other reasons, such as you don’t want to put the project on the PO’s radar, or because you are not sure how to go about it. Of all the POs I have dealt with, emailing them directly has been my preferred choice rather than using the formal communication channel of the participant portal.
The ethical element has to be successfully navigated prior to data collection and this involves liaising with the internal ethics office in order to gain the much needed institutional ethical approval. However this is only the first step in the process, as the EC will have stipulated requirements that need to be met and approved by a dedicated EC Ethics Advisor. Again the relationship built with both the institutional office of ethics and the EC Ethics Advisor is so important in meeting these requirements and negotiating any deviations or deadlines.
Data Protection Officer (DPO)
In order to ensure compliance with the General Data Protection Regulation (GDPR), a working relationship had to be established with the UCD DPO. This involved demonstrating to the DPO that our project clearly addressed and conformed to GDPR, such as the 7 principles, Data Impact Protection Assessment (DIPA), and had a website privacy statement. Again, the relationship built with the DPO positively affected the progress and outcome of this engagement. These relationships do take time and commitment to develop, but they are essential in enabling the project to move forward and deliver against key project milestones.
The UCD librarians have always been a great source of support and help in managing a project in areas such as the Data Management Plan (DMP) and the ‘FAIR’ (Findable, Accessible, Interoperable and Reusable) principles. They have also provided assistance in meeting the EC’s desire for free online access to the project’s peer reviewed articles and/or research data by way of the UCD research repository. Linking to Open AIRE has been slightly problematic, and it has been a combined effort of both the librarians and I to overcome the hidden obstacles and be victorious in our endeavour. Our relationship has, and hopefully will continue to, stand the test of time.
Last and most importantly, in the hope of not sounding like an acceptance speech, I just want to thank all those invaluable connections, networks and relationships that I have been lucky enough to make in my journey as a project manager. The above is but just a few of these invisible threads that help tie together a project and I look forward to many more interactions.
African Solutions for African Problems: What I have learnt from COVID 19 Back Home
By Fernandos Ongolly – May 2020
So, I have been following news of COVID19 as they unfold in Africa. Being an African researcher living far away from home there were reasons for me to worry about my ‘country people.’ I made calls home every day to check on my family, but they seemed to be more worried about me than I was about them. Every evening if I did not make a call, they would call just to help me keep on track with the number of cases in Ireland, at a time when Ireland had around 1000 cases. There were no cases recorded in my country Kenya yet if am not wrong. This to me was because there were no efforts to test for COVID19 at that particular time in March – of course you cannot get what you have not gone out looking for. Business in Kenya and other African Countries continued as usual.
In my opinion one of the reasons my country people were not overly worried was that several folk theories were going round on who can contract COVID19 and how. Coming from trusted people in the community mostly through uncontrolled social media, these created a sense of security among not only Kenyans but most Africans who they thought that they were safe and COVID19 will never get close to their homes. Passenger flights from all over the world continued landing in most African nations as far as mid-March and some originated from hard hit areas with COVID19. Business went on as usual on the following grounds:
Africans cannot contract COVID19
This brought an assurance to Africans worldwide; at one time I was almost convinced by this theory too. When the first cases were being reported back home, they were all imported cases originating from Asia and Europe and none from within Africa. Africans on the continent never braced themselves early enough for a rough ride through lockdowns because they considered themselves ‘uninfectable’. In Kenya, the minister of health kept on assuring locals that they were safe since most of the cases that had been reported were imported. The government decided to fly back the National Carrier’s Boeing 787 from JFK from New York to Nairobi;’ I was tempted to go down to New York from Dublin to fly home in the highly popularised ‘Last Flight.’ All I know is that the pilot of that flight succumbed to COVID19 a few weeks after it touched down in Nairobi. We were never told how many people on that flight were infected. Mark you, the pilot was an African born and raised in Kenya. Can Africans contract COVID19 now?
Africa is too hot for COVID19
In one of the press conferences in the US, President D. Trump said that the virus is a flu that will pass when winter is over. Africans back at home celebrated because they never experience winter and considered themselves very safe from the virus. Other rumours went round that the virus cannot survive in temperatures above 20 degrees Celsius. Almost all African countries have an average temperature of above 20 degrees; this was another point of reassurance. Nothing major continued happening to contain the virus. However, cases were being reported in North Africa where temperatures go as high as 40 degrees Celsius.
Africa had Ebola and HIV experience
Some Africans looked at this as someone with the experience of complex writing skills being given vowels to read. Most people claimed that they had faced more than COVID19. To most Africans COVID19 was nothing close to Ebola and HIV. It was nothing to scare them based on the experience with these diseases, Africans felt reassured through fact that the continent survived deadly diseases before and that COVID19 was ‘just’ a flu that will come and go.
Africans are hardy and survivors
We Africans have passed through many hardships and we have survived. Before COVID19 there was a major invasion of locusts in Eastern part of Africa that caused a lot of damage to crops, somehow it came and passed. There have been drought and floods reported in some parts of the continent that were well survived. With the hardy mentality most knew that they are strong enough to withstand the infection when it comes and the only preparation that was put in place was ‘waiting for Corona to arrive.’
We were given faulty test kits
When some countries like Tanzania that had not put in place any serious preventive measures started testing for COVID19, they recorded far more cases in a day than what their neighbours had reported in a month. The conclusion was that the kits were faulty and unreliable. In Tanzania people were allowed to continue gathering in groups; going to church and other social activities that exposed them to the virus. By that time it was confirmed that Africans can also contract COVID19 but they were still complacent with executing preventive measures. Who bewitched us?
We have herbal remedies
This reminds me of an entourage that flooded a small village called Loliondo in Tanzania some time back when an old man announced to the world his concoction that cured all sorts of diseases. The condition was that you were to go and take it on location for it to work. The concoction was sold at an average price of 50 cents USD and people travelled from all corners of the world to queue for weeks to take their dose. Patients suffering from cancer, HIV among many other diseases were his number one clients. This is no different with COVID19 when Madagascar launched its COVID-Organic preventive drug with an ambitious goal to scale up all over Africa. Did we forget the Loliondo concoction? I’m not against COVID-Organic, if it works, I will be glad to have a bottle!
Light at the end of the tunnel
Despite the struggles and inefficiencies, there have been excellent measures put in place to contain the virus by most African countries. We are proud of Senegal as the first African country to come up with locally manufactured test kits that costed as little as one USD, hence opening an opportunity for mass testing. African nations have realized that it is possible to locally manufacture medical equipment and PPE materials and cut their dependency from their big brothers in the west and handouts from Asia. This has opened an opportunity for faster supply of medical equipment when needed at affordable prices. Other nations have constructed infrastructure such as wards and added their ICU capacities by over double to what they previously had, which will benefit more people post-COVID. This was done in record time. It may not be possible to effectively implement social distancing in Africa, but the spirit of Ubuntu has brought some sense of self-reliance among African nations that can be taken advantage of to strengthen their health systems long term. If there are positives from this current crisis, then I would think that COVID19 will leave health infrastructure footprints that will be useful in the future long after it has passed.
On libertarians and the UK pandemic doctrine
By Théo Bourgeron – April 2020
When the Covid19 virus was exclusively hitting China, much was written on how this pandemic event would be the “Chernobyl of Xi Jinping” and the Chinese Communist Party. Since it has been affecting almost exclusively Europe and Northern America, much is being written on the collapse of globalised neoliberalism and the success of the Chinese model. Over the past few days, I have been trying to substantiate some of these reflections by studying more deeply the UK doctrine to pandemic events. Detailed with great clarity by Prime minister Boris Johnson’s talk on 12 March and Chief Scientific Adviser Sir Patrick Vallance’s radio interviews, this doctrine consists in channelling the circulation of viruses, rather than repressing it, in order to build “herd immunity” in the UK population.
Although it is far from being exhaustive, my study shows that:
- This approach is far from being isolated. The Netherlands explicitly abide by the same approach, with Prime minister Mark Rutte talking about it in his 16 March speech. Except for Italy (ironically), which tried to aggressively prevent the spread of the virus from the onset of the crisis in China, in the first weeks of March there was an underlying ambiguity in the discourses of other European countries regarding whether they were following the UK or the Chinese approach.
- There are strong links between governmentality systems and the management of epidemic episodes. Michel Foucault has shown how the evolution from medieval governmentality to modern governmentality has involved a shift in the two main events that used to destabilise governments during centuries – epidemics and food shortages. The neoliberal order that rose in the 1980s also involved its own epidemic doctrine under the management of the WHO, with the support of the most powerful Western nations. Unfortunately, this organised neoliberal order is arguably coming to an end as several Western nations now openly promote the rise of a new world order based on post-neoliberal ideas – inspired from an authoritarian-flavoured libertarianism.
- Built between 2010 and 2017 by the UK Department of Health, the UK pandemic doctrine deeply reflects:
- The thought of the libertarian think-tanks of Tufton Street that already influenced the UK conservative party on many topics, ranging from Euroscepticism to climate change denying.
- The findings of behavioural economists that compose the Nudge Unit set up by David Cameron in 2014 in the Cabinet Office, including David Halpern, who participates to framing the response to the coronavirus crisis.
- This approach is not a deliberate choice by Prime minister Boris Johnson or the UK government. It also results from the state of the UK after several decades of reforms. It is described as a constrained choice by policymakers, given the configuration of the UK economy and the UK society – as such, it is a structural shift that reveals how epidemics will be treated in a post-neoliberal, libertarian-inspired world.
In my perspective, as the current late neoliberal accumulation regime is evolving, this pandemic event makes clear the tensions between people’s suffering (as people have to accept, in Boris Johnson’s words, “the early loss of loved ones”) and economic structures based on the maximisation of capital returns. In the same way as the current environmental, social and democratic crises, it is already resulting in social unrest situations that will require new modes of government.
More details on these reflections can be found in the April issue of Le Monde Diplomatique. Also available in English soon.
Wait, did you just call me a plumber?
Some inner ramblings of an amateur Actor Network researcher.
By Sula Awad – October 2019
An introduction to me
Ok, I owe you an explanation about the plumbing. But now that I have your attention, let me first tell you a little bit about me. I am Sula. Foodie, wannabe exerciser, avid snacker, reader, and obsessed with navigating “health”. Why on earth have I decided to study “Healthcare Market Failures” for the next 4 years? Well, let’s take it back a notch. I have always been fascinated by the notion of “Health”. What defines health?, Is it a state or destination? Is it achievable or earned through our lifestyle choices? Is it just another loaded 5 letter word that we bash around, oh so flippantly? Is it even linked to diet or is that what “they” want us to believe? Can what we eat trump any medicines healing powers? Or even better; is food medicine? All of these inner ramblings have consumed my brain for as long as I can remember.
My interest in the study of health married with business began during my undergraduate degree in Business Studies and extended to my master’s in Strategy. The pursuit of both my degrees led me to conduct research projects such as “Assessing the Attitudes of Women Aged 18-25 towards their Sexual Health; shaping women’s health services to address psycho-social barriers”. And “A Critical Analysis of the Causes and Alleviators of Mental Health Related Presenteeism in the Workplace in existing empirical research”, and “A Stakeholder Analysis of Sustainable Health Enterprises”.
Clearly, my long lived flame with “health” encompasses many facets. Inherently, becoming a member in a project that was researching “healthcare markets” was a dream come true. Except there was one caveat; a significant theoretical knowledge gap presented itself to me. The empirical contexts of ‘MISFIRES’ work was really cool to me, however, I was anxious and clueless of the theoretical framings used here. However, the more I have read and mumbled juvenile questions to the team, the more familiar I have become with the range of theoretical stances that can be taken to explore this kind of research. This notion of “theoretical stances‘ nicely leads me on to the part of my blog I have been so very eager for you to get to – the “Wait, did you just call me a plumber” bit. The title of this blog is really the phrase that illuminates to me what my role as a researcher in this project will encompass.
To really understand a market and its intricacies, navigating the “plumbing” first is a really crucial aspect. In one of our early reading groups, Susi, the project leader, mentioned that we are like “plumbers” when it comes to studying markets. I can reassure you that she did not mean the image of “plumbing” that you have embellished in your head right now. By definition, a plumber is “A person who fits and repairs pipes, fittings, and other apparatus of water supply, sanitation, or heating systems”. The key word in this definition is systems, and by systems, this means that the plumber attempts to examine/fix the components that make up these systems, rather than just their overarching functionality. The plumber does not just examine the macro level issues and forces that make up a water, waste or sanitation system, rather; she delves deeper and looks at individual components that meld with one another to make this system function as it does.
By focusing on the finer, more granular elements and how these interact with one another, she accrues a more tangible idea of what is happening. She can literally point her fingers at what is creating issues and breakdowns within that system. As a MISFIRES researcher, I aim to emulate this. However, instead of putting my plumbing kit on to examine pipes, fittings, apparatus/ fixtures, I use my conceptual and methodological plumbing tools to study “market actors”, in the hopes that they will shed light on the inner workings, interactions, issues and breakdowns of healthcare markets.
Another definition of a “Plumber” is “a person whose job is to connect and repair things such as water and drainage pipes, baths, and toilets.” The key word in this definition is “connect”. So, when I study different market actors and examine their interactions with their wider environments, my plumbing toolkit also demands that I draw logical connections between these interactions. The analogy I have provided above attempted to unearth what theoretical stance my research will take: an Actor Network Theory Approach.
Yet, plumbers and researchers, despite our similarities, also share differences. Plumbers fix systems, while researchers cannot. We can hope that our work can shed sufficient light on the inner workings of these healthcare systems so that the system may be better informed of how it works itself. This aspect of research can be frustrating at times; however, knowing that my work is contributing to knowledge and has the potential to be shared with others passionate in my area sparks so much excitement within me. Also, it may be important to note that, while a plumbers role may be unappealing or “unsexy” to some, it is fundamental. Perhaps this is another similarity between plumbers and researchers in this space.
So what am I actually researching?
Yes, the above reflections may seem highly conceptual, but these have been catalytic in shaping where I want my research to go. I am now researching how patients form and give life to markets when they feel as though mainstream medicine has failed to provide them with sufficient patient care. The empirical context I am hoping to explore this in is; diseases/illnesses that are often contested by orthodox medicine consensus.
So, I look at what and how actors are disturbing the markets mentioned above. I ask myself questions such as: are the market actors only humans? Is there material forces that are shaping how these patients are able or unable to disrupt these markets? How do the actors go about becoming fundamental parts of the system? What happens when different actors have conflicting narratives surrounding the existence of these markets in the first place? These are questions that I will continue to ask myself for the next while, but if you wish to know more about the answers to these questions, stay tuned for my next ‘MISFIRES’ blog series contribution. Analogies and inner ramblings will assuredly feature! 🙂
The Underestimated Horizons
By Dr Ilaria Galasso – July 2019
A complicated question
One of the most complicated questions I can be asked – and unfortunately, like most people, I have been asked that question many times – is what I do. Or what my job is, what my field is, what my background is. The complexity of this question is not (only) related to the fact that the world of academic research is still quite esoteric, so that people who are not part of it often do not have clear ideas of what researchers do. In my specific case, it is complicated because, in any contexts, answering this question requires a series of specifications, of clarifications, and even of justifications.
The odd one out
I cannot just answer by mentioning the institute I am affiliated to. This would only generate confusion and misunderstandings. Currently I work at the UCD School of Business. Before that, I worked at the European Institute of Oncology. Before that, among others, I attended classes at the Department of Physics . And the most (apparently) odd thing is that, originally, I studied philosophy.
You can imagine the puzzlement of people I have not had contact with for a while, who remember me studying philosophy, when they find me in a molecular medicine institute. Or when they find me at a School of Business if they remember me at the European Institute of Oncology, or at the Department of Physics, or at the Department of Philosophy. Any of them. This is indeed something that requires some explanation. Am I desperately fickle? Well…maybe! But not in this case anyway. Then, am I a sort of “know-it-all”? I wish! But not at all. Quite the opposite: one of the main difficulties of my “tortuous path” is exactly that I have always been a sort of “do-not-know-anything” about the different subjects I was at different times immersed in, at least with respect to the people I was surrounded by. In all these contexts, I (and a few other people with me) have always been the different one, the odd one out.
Not to be mistaken for somebody I am not, I cannot be, and I do not even want to be, means that every time I have to specify my diversity, both outside and within the institutions I have been based in: I am at the Business School BUT I am not in the field of business. Actually, I studied philosophy. I was at the European Institute of Oncology BUT I am not an oncologist or a molecular biologist. I studied philosophy…I was attending classes in physics BUT I am not a physicist. I was studying philosophy…
Philosophy is useless
To explain what I do by starting the other way around – which is, by first saying that I originally studied philosophy – does not make things much simpler. If most people are puzzled about finding a person with a background in philosophy in a molecular medicine or in a business institute, it is because most people have an incomplete idea of what doing philosophy means.
This is not the case with all people, and this is demonstrated by the very fact that programs to include people with a philosophical background in hard sciences classes and in biomedical and business institutes actually exist.
However, the widespread idea is that doing philosophy means to spend the whole life thinking, and thinking of totally abstract things, questions that can never be definitively answered and/or questions that have no concrete relevance. Questions like “does this chair exist? ” or “how can I know I am not dreaming? ” or “are concepts independent objects or mere names?”. Philosophers are often seen as a sort of very romantic poets, fascinating and picturesque but useless characters, dreamers totally disconnected from the real world, living in the clouds and falling in wells for looking at the stars .
So, when explaining what I do I start by saying I do philosophy, I feel obliged to “justify” myself by immediately adding “I do philosophy BUT I also attend classes in physics and other hard sciences, I do philosophy BUT I work in a biomedical institute, I do philosophy BUT I work in a school of business”, which is a way to say: I do philosophy BUT I do not spend my life disconnected from reality with absurd and useless ravings!
Stop justifying: it’s not “but”, it’s “because”!
I think it is very important for all human beings at some point in their lives to interrogate themselves on such not immediately or concretely useful issues as the definition of existence, but I understand that in the face of the big and small problems of our world, metaphysical reasonings could sound to someone as a non-priority.
However, once and for all, philosophy is not (only) this. Even if most times the effects of philosophical activities are not visible in the short term, the most effective contributions to the most concrete problems stem exactly from a philosophical approach – not necessarily the approach taken in the philosophy departments, but by anyone who, independently from their academic background, is committed to questioning and justifying even the most basic assumptions, in any field. It is then by following a philosophical approach that we can question, and possibly determine, vital issues such as priorities in resource allocation, methodological reliability, deeper meaning and long term consequences of scientific discoveries, entitlement of all human being to the same rights and the extension of this entitlement to animals, wrongness of totalitarianism and the very meaning of wrongness.
Philosophy proceeds side by side with other disciplines: it benefits by learning from them, but it also questions their very concepts and assumptions, and it contributes to their advancement by sketching new frontiers.
I have been researching on conceptual and ethical issues around social equity, health equity, and the connections between the two. This has included learning from, as well as questioning: scientific foundations and methods; the mechanisms at the interplay between biological and societal factors for health and illness and the strategies to address them; the market dynamics and the negotiations influencing healthcare innovation and accessibility. This is the long and apparently tortuous path that conducted me from one field to another, and to MISFIRES.
The crucial point, and the most complicated thing to explain when I am asked what I do, is that actually I have not been at the Department of Physics, at the European Institute of Oncology, at the School of Business ALTHOUGH I do philosophy. It is exactly BECAUSE I do philosophy.
Becoming a Patient Researcher
By Dr Emma Stendahl – June 2019
Life is changing.
It was summer and I had just finished the first year of my master’s studies at Stockholm University. I was tired, weak and had lost a lot of weight. Over a three-week period, I had lost about 12 kg, if not more. I remember one day looking at myself in the mirror and I started to cry. I was crying because I didn’t know what was happening to my body. Crying because I no longer recognized the person I saw in the mirror. Around the same time, my vision started to become blurry. So blurry that I had to hold on to chairs and tables or whatever I could grab on to when moving around in the house. And I was extremely thirsty. An indescribable never-ending thirst. My mum forced me to go and see the doctor. At this point, I was so weak that I had to be carried to the examination room. My GP briefly examined me and sent me home with the message to rest; “Listen,you’ve been studying hard the last couple of months, you just need to relax for some time and give both mind and body a break”. However, my GP’s diagnosis could not have been more wrong. Later that evening I collapsed at home and was rushed to the emergency department at Karolinska Hospital. When I woke up, I was told that I had suffered from ketoacidosis, which is a severe life-threatening complication caused by extremely high blood sugar levels. On June 11, 2011 I was diagnosed with type-1 diabetes (T1D) at the age of 26.
T1D is an autoimmune disease in which a person’s immune system attacks the insulin producing cells of the pancreas, and it can no longer produce insulin. Insulin is essential for life because it delivers glucose -blood sugar- which all cells in the body need to function. Too little insulin leads to many problems including increased blood sugar levels which can cause heart disease, nerve damage, kidney damage and pregnancy complications to mention a few. However, if the blood sugar gets too low it may lead to insulin shock, which is life-threatening if not attended to. Managing T1D is an exhaustingjob. No days off. No vacation. It requires attention all day, every day. Whether it is a meeting, eating at restaurants, travelling, partying, exercising, or going through a stressful moment, my diabetes is always ticking in the background. It forces me to constantly be prepared for interventions to respond to high or low blood sugar levels. It has been a lonely journey living with this disease and because I’m the only one with T1D amongst my family and friends, I had no one close to me that fully understood my struggles, frustrations and fears of living with T1D. However, things were about to change.
In October 2018, after finalizing my PhD in Business and Management studies at Stockholm University, Sweden, I moved to Ireland to be part of MISFIRES at University College Dublin. Funded by the EU Horizon 2020 Programme, the research project examines failures in healthcare markets and studies how participants in these markets address and voice these failures to industry and government. As part of MISFIRES, I study T1D. Patients, caregivers, healthcare professionals and device manufactures are becoming ever more adept at understanding T1D and its cause and reactions, which means they are more technically able to fine-tune treatments. Despite this progress, patients are still not able to process and act upon their own data – for instance how your blood sugar reacts over the course of the day to certain foods you eat, or certain stress factors. This data is commonly locked into the devices, with no or limited ability to share across devices, and the analytics required to process such data are complicated. My research examines the interlinkages between digital activism, open data movement and user innovation for improved diabetes care. I focus on an open source community of T1D patients, caregivers, diabetes activists and entrepreneurs and I study how this community attempts to change the traditional diabetes healthcare market. They do this by reverse-engineering existing medical devices and collectively develop platforms and apps and cloud-based solutions to better suit personal medical needs and improve quality of life.
Becoming a patient researcher and diabetes advocate.
I never used to tell people that I had T1D because I was embarrassed of my chronic disease and I didn’t want to be labelled as a ‘diabetic’ or ‘patient’. I kept quiet also because I was sick and tired of dealing with comments and questions such as: “How can you be a diabetic, you’ve always been eating so healthily”and “What?! So you have to take injections four times a day, I wouldn’t be able to do that!”or “I have heard that women with T1D have difficulties getting pregnant, how are you dealing with that?”As I mentioned earlier, things were about to change. Researching and engaging with the open source diabetes community has encouraged me to stand up for my disease and take part in the collective fight for innovation in the T1D healthcare market to reduce both the physical and mental burden of living with the disease and to ultimately improve my own and millions of other T1D patients’ quality of life. My role as aresearcher, T1D patient and now turned diabetes advocate encourages me to focus not only on knowledge production (writing academic papers) but also invites me to make ‘real’ impact to the daily issues and demands among T1D patients. To be honest, it’s not always been an easy journey, because there is no ‘hiding’ from the disease if you not only live it but also research it. But, on balance, it definitely brought me closer to it. I am very excited and proud to be part of MISFIRES aiming to make innovations in healthcare markets such as T1D more collaborative and participatory as well as pushing for innovation policy to better achieve patient interest.
“Why don’t people like you?”
By Stephen Nicola – May 2019
As blog titles go you would be forgiven for thinking you had ‘accidentally’ clicked through to the latest self-help article, or the next wave of exposés outlining some random celebrity’s daily routine (see Mark Walberg) that ‘inexplicably’ continue to permeate your filter bubble. Alas, for those souls in search of clues as to why you have ended up alone, hapless and hated by the vast majority of people you encounter – “these aren’t the droids you’re looking for”. And if you smiled at that reference, that might be something worth reflecting upon.
Regrettably, this blog can’t provide you with the five exercise routines to boost your likeability auras, and no it doesn’t provide the seven mantras Tom Hanks swears by to achieve universal likeability – I would actually quite like to read that one. – As the “you” at issue pertains to a more specific audience and is in reference to the very question being asked of five major biopharmaceutical companies during a panel discussion at Forbes’ 2016 Healthcare Summit by journalist and panel moderator Matthew Herper.
For a panel titled “Pharma All-Stars: Restoring Pharma’s Reputation” the five panellists – representing Gilead Sciences, Pfizer, Eli Lilly & Company, Astellas Americas and Regeneron – would probably have prepared for a potentially rough ride. Marked by one dismissive shrug and a few accompanying sniggers that allayed the questions impact somewhat. However, the pertinence of such a question, posed to an industry that fundamentally exists to help people, is a bitter pill to fathom let alone swallow. One that, if asked of me, would certainly send me into an abyss of self-reflection and on a quest for answers.
Now, you may be wondering why I would revisit a panel discussion that happened over three years ago? Surely if someone asked why no one liked you last week you would have hopefully moved on by now. Well, for one you have obviously never met me, but more importantly the controversies used to emphasise the justification in questioning the biopharmaceutical industry in such a way are still woefully relevant today.
Back on the 2016 “All-Stars” panel, and first out to defend the biopharmaceutical industry – note, defend rather than directly answer – was Gilead Sciences. A company that, as Herper describes, had an “interesting experience in this arena”. ‘Interesting’ was putting it mildly. In 2014, Gilead Sciences launched the medication Sofosbuvir, a drug able to effectively treat and potentially cure Hepatitis C. A launch that should have been met with fanfare and reverence. Unfortunately, this new medication would cost $84,000 per course of treatment and left the vast majority of patients without access. Cue scorn and derision.
Not wanting to let the team down, another member of the 2016 “All-Stars”, Eli Lilly & Company, courted its own controversy about the price of its diabetes medication. One that intensified after US senators investigating the rise of insulin prices revealed that the Eli Lilly’s 20-year old insulin product, Humalog, increased from a list price of $21 per viral in 1996 to $255 in 2016.
Fast forward to 2019, and despite increased competition, the price of Gilead’s Hepatitis C drugs is still too high for several governments to initiate mass treatment programmes, while the price of Gilead’s HIV drugs has also recently hit the headlines. On a brighter note, Eli Lilly have recently announced plans to sell a half-price version of Humalog. Yet, this was in March 2019 and followed years of intense patient and government scrutiny. Lest we forget the years of heartbreak and turmoil that stoke that scrutiny, or that half-prices are still some way north of the $21 list price paid in 1996.
Looking back to the 2016 panel, it is no surprise that “why don’t people like you?” is as relevant today as it was three years ago. In reference to the criticism that followed the launch of Sofosbuvir, Gilead stipulated that “from our perspective it was very good value”. Towing the “All-Star” line, Eliy Lilly were also quick to suggest that “insulin represents an enormous value for what it is”. Unfortunately for the biopharmaceutical industry, like a deranged man screaming that climate change isn’t real because he can still see snow outside his window, the lens through which you view the world does funny things to something like “value”. It might even lead you to misconstrue the argument completely.
So, when the biopharmaceutical industry responds to a question like “why don’t people like you” by using existing beliefs and evidence to refute the basis of said question, it could either mean one or two things. One, the biopharmaceutical industry just doesn’t care, or two, they need some help to properly reflect on the situation.
Although many would disagree, I like to think of myself as an optimist, and I believe that it would be too easy to suggest the former. Too often we forget just how hard it is to step back and reflect upon a situation through a lens other than our own tailored window. Why would you, when you have invested so much time and effort creating systems, languages and structures in order to make sense of that view? It is exactly why you sometimes need help; you need people to keep challenging those structures and highlight the windows that offer new understandings.
That is why the research at MISFIRES is so important. We want to understand how issues such as overpricing or limited access to medicines are diagnosed and voiced. Be able to explain what ‘value’ means in different contexts, and what practices and discourses make these different contruals of value count. Discover how and what systems and structures are in place that obscure or silence conflicting understandings. So, perhaps we can start to bridge those understandings and create a more inclusive and collaborative healthcare market.
So you have won an EU funded project, now what do you do? Hire a Project Manager!
By Gemma Watts – April 2019
You receive notification that your proposal has won funding and after the ecstatic feeling has eventually worn off, reality hits…what do you do next? The first 3 months to mobilise your project are some of the toughest. It is like a start-up when everybody and everything has to be put in place. And this is where a good Project Manager is needed. A Project Manager will oversee the management of and be responsible for key activities and requirements of the project, which in the first 3 months can look something like this.
Starting Point – Understanding the Project, Relationship Building and Planning
Professor Susi Geiger won her ERC Consolidator Award in late 2017, and both the project and I started on the 1stAugust 2018. The starting point for me was to understand what the project was about, the aim, budget, timeframe, and to build a relationship with the lead researcher.
So read, read and read some more – read the proposal, the funder’s guidelines, the grant agreement, any EU or organisational relevant material. Talk to the lead researcher to start a dialogue, to feel their passion and excitement, and to completely immerse yourself in understanding the project as much as you can. Remember you are talking to an expert in their field, your knowledge therefore will never be as in-depth, but you must have some basic understanding to move forward. Then plan the project out, more detail for the immediate weeks and months, with more of a general outline for the middle to long term phase of the project.
What does this mean? It means understanding the budget, what costs are eligible and what are ineligible, and knowing the financial requirements of the EU and host organisation. It means recording, monitoring and approving all expenses, whilst running monthly financial reports. It means starting off on the right foot and maintaining this throughout the lifetime of the project.
So the project is known to the researcher and you… but now you need to build a brand with a logo, theme, colour scheme for the project. You need to develop a concept for the logo, so for MISFIRES it needed to look professional (industry stakeholders will be targeted), easy to read (as the project looks at healthcare markets and therefore could potentially involve people with visual disabilities), and similar to the organisational branding (as the project is based at UCD). We also played around with keywords about the project until we finally agreed upon a strapline of “Innovating together for better markets”.
I have worked with website designers to build project websites in the past, supplying the content and design brief. But this time I decided to tackle this challenge head on, by being the one to design and build the MISFIRES’ project website. I am now a self-taught web designer thanks to YouTube, who would believe it. The website will evolve over time, as it is very much driven by content, so the initial website is just a simple overview, but will expand.
So now you have a brand and a website, you need to communicate this to the EU and beyond. So even before building the website, you need to have an idea of who your audience are, what messages you want to get out, and how. What social media accounts you want to use that suit the project best? We chose our starting point to be twitter. The first tweet can be a big step. Then it can be challenging to keep a dialogue going with your followers in the initial phase, until you really have something to tweet about, such as research findings, papers, conferences and workshops.
Recruitment and Office Manager
Whilst you are working on an online and social media presence, you are knee deep in the recruitment phase with the lead researcher. This means job descriptions, advertising roles, adding jobs to the project website, tweeting about the roles, piles of documentation and liaising with HR on contracts. Once those huddles have been jumped successfully, you move onto the next stage, to the arrival of the team who breathe life into the project. There follows individual inductions, office requirements (such as desk space, lockers, keys), promoting the team (through the website and tweets), purchasing (computers, monitors stationary, even down to the paperclips).
Those first months fly by and it is an uphill challenge, but now the real fun of the project begins, and you are only 3 months in… What comes next? Well, this will be for another blog!
Notes on Author:
Gemma Watts has worked in UCD for over 10 years. Firstly in the many divisions within the central research support office, UCD Research. And since 2015 working directly for leading researchers to assist in running their EU projects, from H2020 Marie Curie Actions – ITNs, to European Research Council (ERC) Consolidator Award. She has also been involved in the proposal writing for large EU grants.
She holds the project management qualification – PRINCE II practitioner, a Chartered Institute of Marketing Diploma and a Business Administration Degree.
How did I get here?
One academic’s journey to leading an ERC project
By Prof Susi Geiger – March 2019
Full disclosure upfront: I have always been a classic academic, happiest in my ivory tower reading esoteric books and articles and writing those same, to be read and hopefully appreciated (but most likely mercilessly criticized) by about fifteen other people in the world. And the great thing is that in my job, by and large, I am incentivised to do just that: write stuff that I and a handful of other people find interesting – as long as it gets published in the places and journals that count. That’s the academic game, right?
At some point, about five years ago, this game felt like it wasn’t enough anymore. Call it an academic’s midlife crisis, but the ‘so what’ question loomed large. At that point I was asked to join a funding bid for an interdisciplinary research center in digital health, bringing together investigators from IT, healthcare and business to help enterprises and not-for-profit organisations active in digital health. This was a completely new departure for me: truly interdisciplinary research, and research that would – potentially – truly matter to someone. We won the bid, and we started to research with the world outside academia rather than on it, collaborating with companies big and small, government agencies, and other market actors. And in doing so we created what’s now known and measured across academia as impact.
This experience whetted my appetite – could I take this further? Could my research actually be made to really matter, at a grander – read: societal – scale, even though in social sciences we’ll never be the ones who find breakthrough cures for cancer or means to halt climate change? If it did, the healthcare and pharmaceutical space would be the place for it. It’s an arena I had not only gained some familiarity with over the course of years of researching it, but also found utterly fascinating. From an economic perspective, healthcare is pretty much broken all over the world. When I say broken, what I mean is that it has become far too expensive given recent demographic shifts, specifically people living increasing lifespans and suffering more and more from chronic diseases. So governments have a problem in that they have to stretch their dollars or Euros across a greater number of people, and patients often have a problem in not being able to access adequate healthcare, or having to pay the very high costs for it. Yet, many healthcare industries – particularly the pharmaceutical industry, but medical devices too – are still highly profitable and growing. And curiously, those companies with essential medications for afflictions such as HIV/AIDS and cancer often turn out to be the most profitable.
The HIV/AIDS case is a particularly interesting one. As popular movies such as Dallas Buyers Club or BPM (120 BATTEMENTS PAR MINUTE) illustrate, this was a space where activists and patients frontally challenged the pharmaceutical industry and demanded access – to drugs, to research, to distribution channels, to affordable medication. This case got me thinking, and I started to look around for other instances where the arrangements in a powerful and lucrative industry-dominated market were challenged by patients or patient organisations. Turns out this isn’t an isolated case. Healthcare markets are what my co-editors and I called ‘concerned markets’ in a 2014 edited volume of the same title, that is markets characterised by diverse interests of multiple actors and significant social and political stakes. These markets are not only concerning to many, they’re often also hotly contested. But at the same time, those contesting the dominant market players often try to work with them to make these markets better – they don’t have a choice really, as these industry players hold the key to many essential medical innovations. How these kinds of collaborative market innovations spanning patient activists and industry work hadn’t been systematically studied up to now, though of course isolated case studies existed. And so I sat down – and stayed sitting for about three months – to write an ERC Consolidator proposal to research this space. Almost two years and a good dose of luck later, I hired the first researchers to help me with this project, a project that we called MISFIRES, a name that reminds us continuously that what we sometimes think of as market failures can be addressed collectively, and can be overcome. My ultimate ambition with MISFIRES is to do at a small scale what Nobel Prize winner Elinor Ostrom did so beautifully for the theorization of the common good: to accumulate many different cases of collaborative market innovation in healthcare and beyond, to see what patients and other activists do on the ground, online and offline, to challenge dominant market players to become better at what they do. Better, importantly, not in the classical shareholder sense of more efficient or more profitable, but better from a social justice perspective: better at serving the healthcare needs of the largest possible range of patients in need of healthcare products and services. If, at the end of the day, this research helps to improve the markets in question, or to give industry and activists a platform and vocabulary to better interact – I’ll be a very happy (and perhaps slightly less classic) academic!