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!