Sara Riggare

Not patient but im-patient

Category: My writing In English

  • Patient self-experimentation makes the headlines!

    Patient self-experimentation makes the headlines!

    What is self-experimentation?

    Sanctorio sitting in the balance that he made to calculate his net weight change over time after the intake and excretion of foodstuffs and fluids.

    Self-experimentation is a type of single-subject research where the researcher and the research subject are one and the same. This is a practice with ancient traditions and prominent examples exist throughout history. Some of the more well-known include: The Italian physician Sanctorius of Padua (1561-1636) who is considered the father of experimental physiology, largely as a result of him for thirty years using a ”weighing chair” to weigh himself, everything he ate and drank, as well as the urine and faeces he excreted. This led to him formulating new theories about our metabolism, some of which are still valid today. Another example is the German physician and researcher Werner Forssmann (1904-1979) who in 1929 performed the world’s first heart catheterisation, on himself. A more recent example is the Australian physician Barry Marshall who in 1984 infected himself with Helicobacter pylori, thereby proving that stomach ulcers are the result of a bacterial infection. Both Forssmann and Marshall were rewarded with Nobel prizes for their discoveries. 

    What happened the other day?

    And just the other day, self-experimentation made the headlines of Nature, one of the most prestigious scientific journals in the world. The article is titled “This scientist treated her own cancer with viruses she grew in the lab” and is definitely worth reading. It is about the Croatian virologist Beata Halassy who, after getting her second recurrence of breast cancer, combined her virology training with self-experimentation and administered oncolytic virotherapy to herself. Her oncologists agreed to monitor her and they are also coauthors to the scientific article in the journal Vaccines describing the study. The study was rejected by more than a dozen journals before being published by Vaccines and Halassy says that the reason for the rejections was ethical concerns. There are certainly plenty of interesting ethical challenges here and I would like to focus on a specific section in the Nature article, where law and medicine researcher Jacob Sherkow comments:

    “The problem is not that Halassy used self-experimentation as such, but that publishing her results could encourage others to reject conventional treatment and try something similar, says Sherkow. People with cancer can be particularly susceptible to trying unproven treatments. Yet, he notes, it’s also important to ensure that the knowledge that comes from self-experimentation isn’t lost. The paper emphasizes that self-medicating with cancer-fighting viruses “should not be the first approach” in the case of a cancer diagnosis.

    “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case,” says Sherkow, adding that he would have liked to see a commentary fleshing out the ethics perspective, published alongside the case report.”

    These are relevant and important points and I would like to share my thoughts on this. 

    What are my experiences of ethical issues relating to self-experimentation?

    I have some personal experience from self-experimentation myself, although of a much less invasive nature. In one study I used an observational design to better understand how the effects from my medications vary over the day. I take a lot of pills to reduce my Parkinson’s symptoms. The pills have to be taken several times every day and the medication effect waxes and wanes as the substances in the pills are being taken up and metabolised in my body. This study is published in a scientific journal: “Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking”.

    I have also used self-experimentation in an interventional study to investigate the effects of nicotine administered via an e-cigarette on levodopa-induced dyskinesia (a troublesome side effect of Parkinson’s medication). This study is also published in a scientific journal: “Patient-driven N-of-1 in Parkinson’s disease: Lessons learned from a placebo-controlled study of the effect of nicotine on dyskinesia”. 

    In 2018, my application to defend my PhD thesis at Karolinska Institutet was rejected, see a small excerpt from the decision of the Dissertation Committee here:

    ”[…] The primary focus of this process has been the issue of ethical approval and the conclusion is that The Ethical Review Act does not make exceptions for research on persons who themselves are scientifically involved in the study. […]”

    The full post is available here. 

    Subsequently, I went on to successfully defend my PhD thesis at Radboud University in the Netherlands, which you can read about here:

    As part of the process of transferring my PhD work from Karolinska Institutet to Radboud University, together with my main supervisor, professor Bas Bloem, my co-supervisors assistant professor Maria Hägglund and Martijn de Groot, and professor of biomedical ethics Annelien Bredenoord, I wrote a commentary on ethical issues in relation to my thesis work: “Ethical Aspects of Personal Science for Persons with Parkinson’s Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?”.  

    What are my thoughts on what Halassy did?

    From a patient perspective, I completely understand why Halassy did what she did. She found herself faced with a personal health challenge with huge implications. For her it was literally a matter of life or death. At the same time, she had access to knowledge and resources that she could use to potentially address her problem, and hopefully survive. Of course she felt she had to do what she could with what she had at her disposal! In this case, my guess would be that there are few people in the world more suited than Halassy to make a genuinely informed decision about this specific treatment and the risks involved. And, in fairness, that was also what Sherkow said in the Nature article: the problem was not that Halassy had used self-experimentation. 

    Sherkow went on to say that the actual problem was that she had published her results, because “her results could encourage others to reject conventional treatment and try something similar”. Let me unpack that statement a bit: Is it reasonable to think that others with breast cancer would reject conventional treatment based on the publication of this study? I genuinely don’t think that is a likely scenario, for several reasons. First and foremost, very few patients have the knowledge needed and access to a virology lab. So why and how could the publication result in others rejecting conventional treatment? And if they did reject conventional treatment, for whatever reason, surely that is their prerogative? 

    To me, Sherkow’s statement seems to be an example of epistemic injustice in action, and in this case testimonial injustice, which according to the Wikipedia entry means “unfairness related to trusting someone’s word. An injustice of this kind can occur when someone is ignored, or not believed, because of their sex, sexuality, gender presentation, race, disability, or, broadly, because of their identity.” Before we ”become patients”, we have been able to live an independent life with responsibilities, obligations, and human rights. Why would we suddenly become unable to make our own decisions, just because we have been diagnosed with a life-altering medical condition, for example cancer?

    In contrast, I would like to ask: Would it have been ethical by Halassy and her coauthors NOT to have published what they learned from this?

  • This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

    This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

    (This blog post is also available in Swedish =>> here)

    Most people living with Parkinson’s disease take a lot of pills, multiple times a day. After having Parkinson’s for a while, it’s not uncommon to be prescribed 3-4 different types of medications to be taken in various combinations 4-6 times each day. One of my medications is an extended-release type, which means that the pill slowly dissolves in the body, and therefore, at least in theory, it’s sufficient to take it only once a day. When I started taking that medication, I did exactly that, took it once every day, in the morning. After the usual “adjustment problems” such as a bit of nausea and similar issues for a few weeks, I felt confident that the addition of this medication did indeed make it a bit easier for me to move around.

    After some time however, I noticed that the positive effect was noticeable in the morning but the pill didn’t give me as much of an effect later in the afternoon. During my next neurologist visit, I mentioned this to him. I knew that the same medication was available also in other dosage strengths so I asked him if maybe he could prescribe it to me in a lower strength so that I could spread out my intakes of the extended-release formulation over the day. In this way, I could take lower doses at several different times instead of taking only one higher dose tablet in the morning. He considered this for a few seconds and said: “According to the information from the pharmaceutical company, it really should be enough to take this medication only once a day, and it does seems inconvenient to take it at multiple times. But if you really want to, you can try.” I left the clinic with a new prescription and was curious to see how this new dosing would work out.

    Classification of patient knowledge by source of learning. (From: Dumez, V., & L’Espérance, A. (2024). Beyond experiential knowledge: A classification of patient knowledge. Social Theory & Health.)

    It should come as no surprise that I strongly believe that the improvement of healthcare should be done together with patients, and I recently came across a scientific article that made me see patient involvement in a completely new light: “Beyond experiential knowledge: a classification of patient knowledge” written by Vincent Dumez and Audrey L’Espérance. They identify six types of patient knowledge from three main sources of patient learning, see the Figure. You can read a separate post about that article here, and most important is that Dumez and L’Espérance made me aware of the concept of patients’ experiential knowledge. I also went through that article’s reference list (a good way to find other relevant scientific articles in a particular field) and found a very interesting article published back in 1976: “Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups” written by Thomasina Borkman. There, experiential knowledge is described as “first-hand knowledge,” meaning knowledge obtained from personal experience with a phenomenon, as opposed to knowledge that comes from reasoning, observation, or reflection based on information provided by someone else. I have written a separate post also for this article (link here).

    So what? Why is this important?

    What does this mean then? In what way do these two scientific articles relate to patient involvement? This is my take: Through their education and professional work, healthcare professionals have acquired theoretical knowledge. They have also gained experiential knowledge through their professional practice. Of course, both of these aspects are very important when you want to improve and further develop healthcare. And if you live 24/7 with illness, disabilities, and the need for help and support from healthcare and society, AKA patients, you gain experiential knowledge. That kind of knowledge cannot be gained theoretically. You cannot get experiential knowledge from reading a textbook or a scientific article, it can only be acquired through living it.

    This means that without also having direct access to patients’ experiential knowledge, healthcare professionals do not have the full picture and therefore cannot solve the problem at hand: to optimize individual health, in the best way.

    Finally

    You might wonder what happened when I started taking the extended-release medication several times a day instead of just once every day. Well, as usual when making medication changes, there were some initial adjustment issues when I went from a higher dose once a day to several lower doses. After that, it became very clear to me that this way of using the medication gave me a noticeably more consistent effect. I shared this with my neurologist, and later I heard from other people with Parkinson’s who also go to him that he started prescribing this extended-release tablet in the same way to other patients as well.

    In conclusion: involving patients in improving and further developing healthcare is important because it ensures that healthcare is based on the actual priorities that patients have, rather than the priorities that healthcare professionals think that patients have.

  • Classification of patient knowledge

    Classification of patient knowledge

    I vividly remember the first time I realized that my neurologist and I are in possession of vastly different although complementary types of knowledge. At the time, I had been a patient of his for a couple of years and in between appointments, I would write my questions about Parkinson’s disease (PD), my treatment, and other things that I thought were related to my condition on a list that I brought to my next visit. He would patiently answer my questions as best he could and on the subway going home from the clinic, I would start my next list.

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  • Patients’ experiential knowledge and expertise

    Patients’ experiential knowledge and expertise

    I recently came across a very interesting scientific article, published almost 50 years ago, with concepts that are definitely still relevant and important today:

    Borkman, T. (1976). Experiential Knowledge:
    A New Concept for the Analysis of Self-Help Groups. 
    Social Service Review, 50(3), 445–456. https://www.journals.uchicago.edu/doi/10.1086/643401

    (more…)
  • “Do you want to drink cappuccinos or do you want to get well?”

    “Do you want to drink cappuccinos or do you want to get well?”

    Even though the notion of shared decision-making in healthcare was first mentioned in scientific literature already during the 1970s, the main development in the field has taken place since 1997, when the well-cited article “Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)” by Charles et al. was published. In it, the authors state that “To date, the concept has been rather poorly and loosely defined”. They go on to suggest the following four “key characteristics of shared decision-making (1) that at least two participants–physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement.”

    (more…)
  • WPC2023: “To track or not to track”

    WPC2023: “To track or not to track”

    In July I was in Barcelona to attend the 6th World Parkinson Congress or WPC. As expected, it was a few very intense days with many impressions and interactions. One of my commitments was to speak in a morning plenary session. It was the start of day 2 of the conference and there were people sitting on most of the 1 750 chairs in the room. I was proud and honoured to be part of the impressive lineup.

    Linda and I preparing for our session.

    The main title of the session was “Tracking Disease Progression in Parkinson’s: Why and How?” and it was chaired by neurologist and movement disorder specialist Cecilia Peralta from Argentina together with Linda K Olson who is a physician and person with Parkinson’s, as well as a triple amputee. You can read more about Linda on her website here, and in her captivating memoire “Gone: A Memoir of Love, Body, and Taking Back My Life”. Trust me, you do want to read more about her!

    The full lineup and program of the WPC morning plenary “Tracking Disease Progression in Parkinson’s: Why and How?”

    The first speaker was professor Bas Bloem from Radboud University in the Netherlands who did an excellent job outlining why we should track PD. Equally excellent were the presentations by professor David Standaert and professor Thilo van Eimeren covering blood and tissue-based tests and imaging to track PD.

    A recording of my talk, with the title “To track or not to track” can be found below. It is filmed with a mobile phone so the audio is not perfect. I recommend turning on the captions (in English).

  • Jag har fått ett pris! / I have received an award!

    Jag har fått ett pris! / I have received an award!

    (For English, scroll down)

    Idag fick jag ett brev från Parkinsonfonden: Jag har tilldelats Elsa och Inge Anderssons pris 2023 för bästa doktorsavhandling inom parkinsonområdet. Priset är på 100 000 kr, varav 25 000 är ett personligt stipendium och resterande del ska gå till min fortsatta forskning inom området.

    Jag är glad och väldigt stolt över denna ära! Jag ser utmärkelsen som en signal om att jag är på rätt väg och att jag har ett ansvar att se till att min forskning ska komma till verklig nytta. Detta ansvar tar jag på allra största allvar! Tack Parkinsonfonden!

    In English:

    Today I received a letter from the Swedish Parkinson Foundation: I have been awarded the Elsa and Inge Andersson Prize 2023 for the best doctoral thesis in the field of Parkinson. The prize is 100,000 SEK, of which 25,000 is a personal scholarship and the remaining part will go to my continued research in the field.

    I am happy and very proud of this honor! I see the award as a signal that I am on the right track and I have a responsibility to ensure that my research results in real benefit. I take this responsibility very seriously!

    A big thank you to the Swedish Parkinson Foundation!

  • Patients’ shift of perspective (animation)

  • How I became a researcher in personal science

    How I became a researcher in personal science

    I was recently asked a question that I hadn’t been asked before:

    How to become a researcher in personal science?
    Can you describe your process
    from idea to completed doctor’s degree
    in personal science?

    I replied by making a list of some of the blog posts that I have written during my journey. I started in early 2010 and I got my PhD degree in March 2022. In those 12 years I have learnt a lot, and many of my learnings were things I didn’t know that I didn’t know. Below are the 20 blog posts I have chosen to represent that journey.

    Enjoy and let me know your thoughts in the comments!

    Link number 1, from February of 2010:

    On a tightrope – Life is a balance!

    Link number 2, from December 2010:

    Me and PD revisited

    Link number 3, from April 2011:

    The first meeting

    Link number 4, from April 2011:

    The first diagnosis

    Link number 5, from September 2012:

    My mission is NOT to improve healthcare…

    Link number 6, from October 2012:

    First time I wrote about my image with 8 765 blue dots and 1 red:

    Healthcare vs Selfcare

    Link number 7, from October 2013:

    Bruised knees and bruised ego…

    Link number 8, from May 2014:

    We need a “Copernican Revolution” in healthcare!

    Link number 9, from October 2014:

    Healthcare or health?

    Link number 10, from October 2015:

    The Burden of Tracking

    Link number 11, from January 2016:

    For whose sake is research done – really?

    Link number 12, from March 2016:

    Neuroscience – theory and practice

    Link number 13, from August 2016:

    What is in a fall?

    Link number 14, from August 2017:

    A small round white pill

    Link number 15, from September 2018:

    Ethics and PhD

    Link number 16, from January 2019:

    Walking revolutionised

    Link number 17, from July 2019:

    “But Sara…”

    Link number 18, from July 2020:

    PhD trajectory update

    Link number 19, from November 2020:

    Tracking of COVID-19

    Link number 20, from March 2022:

    On this day 10 years ago…

  • I can’t take yet another solution looking for a problem…

    I have long since stopped counting the number of tech companies that have contacted me over the years to get me to help with what they are convinced is the app/device/platform/system that millions of persons with Parkinson all around the world are just waiting for. The absolute majority of the tech people were proudly demonstrating a solution looking for a problem. Of course, most of the time the tech people expect me to help them without any sort of compensation for my time. I guess you can’t blame them for trying but frankly, I am pretty fed up with that kind of attitude. I probably have less patience with these kind of requests these days and of course people contacting me today cannot know that I have been getting literally close to a hundred more or less identical requests for the last 10 years or so…

    I sincerely hope that I am wrong but often when some tech entrepreneurs contact me wanting to pitch their idea, I get the feeling that the process has been as follows:

    1. They have come up with a novel idea to somehow quantify/measure movement
    2. They have a brainstorm around potential diseases to use their solution for.
    3. Someone remembers that Parkinson has to do with movement somehow
    4. Next step: convince some funders to back their idea and deliver the solution to patients in need

    …….. unfortunately it’s not that simple

    Tech companies – do your homework first

    My recommendation to all tech startups would be to do a quick search in Google Scholar before starting to reach out to patients with that disease for assistance with their idea/solution. I did a very crude search for Parkinson that yielded A LOT of hits (see image below). I would expect all tech startups with a genuine ambition to help persons living with Parkinson to at least check out the articles on the first few pages.

    That way they can learn something about the disease they have chosen to work on and also get a sense for what kind of technology is already available in that field.

    A long way to go

    Don’t get me wrong, I am not a technology-hater. I genuinely believe that there is a lot of potential in using technology for Parkinson. But technology is just a tool, not a goal in itself and for the full potential to be realised, we need to change the way we develop technology. The following quote from a scientific article that I am one of the authors to illustrates that point:

    […] Our analysis shows that people with PD (PwP) want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm. […]

    Riggare S, Stamford J, Hägglund M (2021)
    A Long Way to Go: Patient Perspectives
    on Digital Health for Parkinson’s Disease. 
    J Parkinsons Dis.

    But is it really a technological problem…?

    My final point is that the use of technology for helping people living with complex chronic conditions is actually not a technological problem at all. It is in fact ultimately a problem of business models. Let me offer an example from the field of Parkinson:

    Remember the Emma Watch? It came from an innovation program in 2017 where the British young graphic designer Emma is given back her ability to draw through a vibrating bracelet developed by a designer working at Microsoft. The YouTube video (below) has several hundred thousand views and I was sent the link by many of my friends. That was 5 years ago so you might think that this fantastic bracelet should be available to buy now. You would be wrong. “Well, it’s probably in the last stages of pre-market developments then” you may suggest. You would be wrong again. On Microsoft’s webpage for this project, there is information about the prototype featured in the video. But no updates has been made since 2017…

    There is no way of knowing how many out of the around 10 million people living with Parkinson around the world could be helped by technology such as the Emma Watch. Because there are currently no sustainable business models for supporting the development of genuinely patient-centered technology.